My Blog

 

December 9, 2017

I see so many struggles that people living with dementia are having. Some are in denial not believing their diagnosis, some are angry at their diagnosis and are looking for someone to blame.

So many are afraid of the unknown and what their future may bring. They know all the myths and stigmas associated with dementia and think the worst. Then I meet those that just want it to be over. They don’t want to see their family destroyed and somehow think if they were not around, everyone’s problems would magically go away.

Many times, words will not help, someone needs to listen to them and help them make the right decisions for themselves. Not try to influence their decisions but make the resources available to them and explain these resources to them.

Walk with them and not try to lead them. Let them have the respect they deserve and the dignity we all want. Shine the light on the path, and help them walk straight.

December 7, 2017

Christmastime is sad for some because of the loss of a loved one. I have no words to make you feel better, but I can share your grief with you and share the spirit of Christmas I have. Christmas is more than the commercialism we see. It is a time of healing and forgiveness.

We all celebrate in different ways and for different reasons, but we are unified in a spiritual way regardless of our beliefs. It is a time when we forget our differences and help each other.

This Christmas, help someone overcome their sadness, give the gift of love.

December 7, 2017

This is the time of year I stop and reflect over the past 12 months to see if I accomplished anything or was I just walking. I feel good because I was able to smell the roses along the way and get a better look what lies ahead.

I don’t fear the future nor have regrets what I’m leaving behind. I am passionate in what I believe and beyond belief the amount of people that joined me in raising dementia awareness. I take no credit in leading the way but do feel like I am part of the movement.

I look forward to the new year approaching and the world working together for a better life.

December 6, 2017

Several years ago, I wrote that I felt like Johnny Appleseed wandering around the countryside, planting the seeds of dementia awareness. Several of those seeds got airborne and travel to other countries and started to take root.

I now have thousands around the world that share my dream. It is no longer my dream but rather our dream. We are working together to not only change the way people think about dementia but spreading the belief that there is life after your diagnosis.

We share the things we learn and see our dementia community as one. We are getting back to the faith that we were put on this earth to help each other. We still have so far to go but I’m proud of what we accomplished so far. A World Without Dementia is within our grasps.

December 5, 2017

‘Crossing the limits’ while living with dementia. My Italians friends sent me a video showing how they do it, why they do it and most importantly, how it benefits the person living with any form of dementia.

Most people read the “book” and see us like the people they read about. They go into their care mood and seem to forget we are still people. We like to laugh and have fun, like anyone else.

I encourage people living with dementia to try new things, if it is safe for them. Throw a silk scarf into the air and watch it float down. Gather as a group with the sole intention of laughing and forgetting for the moment, you were diagnosed with dementia.

Cross the limits of living with dementia, and enjoy your life.

December 5, 2017

I walk down this golden imaginary path I’m walking, and don’t see the hatred or dysfunctional people that seem to be everywhere. I am only focused on what lies ahead and a better life.

I realize I may have to wait on my loved ones to follow, but we will be joined once again and fulfill the dream I’ve been having for, so long. Hope fills my heart and no matter how bad things appear, once we cross that line, we will see the world that we worked so hard to see.

We can’t let our fears and hatred overcome us, there is a better life ahead if we work to get there. Learn to be kind and overlook the difference we may have.

December 4, 2017

Do you see what I see? Unless you walk in the pits of dementia, you probably don’t, and I pray you never do. We usually think of forgetfulness when you think of dementia, but you are only scratching the surface.

We are only now beginning to understand the emotional toll that any form of dementia takes on us. I see many care partners that fall by the wayside way before their loved one does. Dementia affects us by the emotional strain it takes on us.

I feel what I see and that makes raising awareness more important to me. I can close my eyes to block the ugliness, but the feelings are what brings the tears and makes the hairs on my arm stand up.

I believe I was diagnosed with dementia, so I could learn the emotional views of this disease and share them with you. I had to live through these emotions so many times before I was able to understand that there is Hope.

Hope is the hardest lesson to teach because it is the first thing taken away from you and the hardest to recover. There is Light and Hope, but we need to work together to find it.

December 4, 2017

Our Dementia Friendly Cruise was a tremendous success. Friendships were made, and knowledge was shared. Most of all, we came together and laughed regardless of what problems we were having.

It was so hard to climb down from the high I was feeling, and can’t wait for the next adventure.

December 3, 2017

I was busy today in my shop. Christmas is coming.

December 3, 2017

When I was touring St Thomas, I saw first hand the damage the storm did. Peoples lives were torn apart and homes destroyed. I also saw groups of people laughing and eager to tell you about the storm.

How is this possible to have your life destroyed and find ways to recover? Why didn’t these people just give up and let nature takes its course? Throughout all the darkness they saw a speck of Light, called Hope, and reached out for it.

This is exactly the message I want to give to every person after they get the dreadful diagnosis of dementia. Life seems so dark, but there is that speck of Light that once you seek it, will give you Hope.

It makes no difference if you have a life threatening disease or the depressions and frustrations of life is getting you down. You can receive Hope, maybe not in the form of a cure, but for a better life ahead of you.

November 29, 2017

It was cold and crisp, but I had a need to sit outside on my bench and give thanks to whomever was listening. It is such a sunny beautiful day, that soaking up the energy, it was offering, was easy to do.

I call this my “me” time, no pretending everything is ok, just me opening my soul and asking for guidance. Someday I would like to share this emotional connection I get from nature, but I am so afraid someone would call in a wellness check be done on me and spoil the relationship I have to nature.

There is no lying when I sit on my bench, my fears come pouring out of me and ways to adapt and face them come flooding into my mind. I always believed in a higher power, but several incidences in my life lead me to giving my life to this higher power and let it control my thoughts.

Winter is coming, but that will not disconnect me from this magical emotion I get from nature. I will reach out, and it will touch my hand. It will be there to sooth my fears and help to guide my life.

November 28, 2017

I’m slowly coming down off of the cloud I was on, and getting my feet planted back on solid ground again. Seven days cruising the Caribbean and living a dream I never thought I would have, and meeting so many wonderful people, proves what a blessed life I live.

The trip was planned so well that I never had any problems while living with dementia. I had ample amount of quiet time and time to discuss my thoughts on living with dementia.

I saw the storm destruction and how the people were getting their lives back together. The emotional similarities impressed me because it made me think of the times I wanted to give up but for some reason, I kept rebuilding my broken life.

I enjoyed the most, sitting out on the deck and feeling the strength and the force of the ocean. Nature has a way of rejuvenating us if we allow it to. I can’t thank Lori Lebey and her team of planners enough for organizing this cruise and giving me memories I never thought possible.

November 26, 2017

It’s beginning to look a lot like Christmas, everywhere you go. I remember back in August when the Christmas spirit got hold of me and everyone laughed. They said, not until after Thanksgiving.

I waited, knowing the Christmas spirit was bound to get hold of them and make them as excited as I was. Well here it is, and signs of Christmas is everywhere. I’m not talking about the commercial version that I disagree with, but the spirit of kindness and understanding I see.

You need to understand the true meaning of Christmas then you will know why I get so excited.

November 25, 2017

Another lesson I learn from my Sente-Mente family was, In the morning, as soon as you get up, look in the mirror, greeted by saying your name aloud and wishing yourself a good day.

Be glad to see the person you are. Like the person looking back, knowing you are still the loving person you always were. Be kind to everyone around you, but mostly, be kind to yourself.

November 23, 2017

Today is a day designated to give thanks but if you are living with dementia, is there any thanks to give. I can only speak for myself, but I can give thanks every day to having my eyes open to a entirely new world living with dementia.

I found the true meaning of life and what my life is about. I was given a purpose in life which keeps me alive. I caught a small glimpse of my afterlife and why I believe I am walking toward a better life.

I found happiness and ways to live with my Alzheimer’s. I love Thanksgiving because it reminds me to give thanks for the wonderful life I live.

November 22, 2017

There will be no more sorrow. This is part of the dream I have every night. I can see it but can’t touch it. I haven’t been able to understand this dream, but I believe a wonderful message is being sent to me.

I see a World without Dementia and just can’t seem to get it out of my mine. Maybe I’m being over optimistic, but I can dream. My dream gets me through many hard times knowing there is a better life ahead of me.

I want you to see this better life and reach for it. It is there for the taking but you may have to climb a mountain to reach it.

November 20, 2017

Our cabin was on deck seven and all cabin's looked the same to me except the one i was staying in. The organizers of our trip put this on the outside of my door so we could easily find it.

November 20, 2017

When the idea came up about taking a seven-day Dementia Friendly Cruise to the Caribbean, I was very apprehensive about it. I have been living with Alzheimer’s for 13 years and wasn’t sure I would be able to handle the stress of traveling and being away from my safe home for long.

I worried about dealing with the luggage, since I walk with a cane, and how I was going to get the luggage from our plane trip to the motel and then onto the ship. How I would ever deal with the rocking of the ship and being around so many people for 7 days.

When we got to the airport, would I have to deal with the stress of waiting for hours to get through security. I worried about wandering off and getting lost on the ship and would I ever find our cabin on the ship. Would I feel trapped on the ship and want to get off. Could I even have a good time with the anxiety I was feeling.

All my fears were illuminated by the planners and organizers of the trip. Arrangements were made to have my luggage taken care of and easy access through TSA at the airport. When we got to our destination, a shuttle was waiting to take us to the motel and the following day to the ship. Once again, our luggage was taken of and waiting for us inside our ship’s cabin.

Boarding the ship and going through their security was so simple and we were soon inside our cabin and I was sitting outside on our deck looking out over the water waiting for us to debark.

My biggest fear of getting onboard was now over and my next fear of coping with life on the ship needed to be faced. We went to our first meal and I fell in love with the huge buffet they had. Anything that you want to eat was somewhere in the buffet and they would carry your plate to your table for you.

At dinner time we would eat in the restaurant, at our designated table each day so we never had to find a table to eat together and the service was first class. Our cabin was beautiful with a view that changed daily and the only concern I had left was, would I have a good time.

What a silly thing to even think. When I wasn’t at the symposium, we went to onboard shows, saw a movie along with various port excursions and every night a group of us would meet on the top deck and talk about the fun we were having.

I worried needlessly about the trip and we were well taken care of. After 51 years of marriage, this was the first cruise Hazel and I ever took but I can guarantee you, it won’t be our last.

November 20, 2017

I would suggest taking a cruise with a group of friends and forget about your worries of living with dementia. We had so much fun enjoying the time we have left and found the joys of living with our disease. Someone was always there making sure you were getting the most out of your vacation.

We had ample amount of time to relax and discuss many problems we were having. We laughed so hard at times that tears came to our eyes. We stepped outside of our protected cocoon and got our life back.

I talked to strangers that found their way into my heart and family and found out that we share universal struggles living with dementia. I heard “I don’t know what to do”, so many times, so we gave them the resources to get the information they need.

I heard so often, let’s do this again.

November 19, 2017

Who would think they would allow me in a place like this. They did follow me around and told me not to touch. Beautiful ship.

November 19, 2017

Guess who was at the beach with me?

November 19, 2017

It wasn't Dominick the Italian Christmas donkey, but i think she likes me.

November 19, 2017

I locked the door, said grab a cup of coffee and have a seat then got my soap box out. I almost look serious.

November 19, 2017

This was home for seven glorious days.

November 19, 2017

I can’t even begin to put into words what a wonderful cruise we had. I pulled so many new friends into my family that I had to buy an additional two luggage bags to carry all the love we shared.

So many told me that they never knew they could laugh so much living with dementia. Every night we would gather on the top deck to have pizza and have our own personal Memory Café. We were there until 11:00 knowing we had to get up early for the conference.

We saw so much storm damage and the strength that the people have to carry on restoring their beautiful country. They reminded me that no matter how damaged you become, with help, you can once again be beautiful.

November 10, 2017

Hello everyone, I was in my glory getting ready to land in Ft Lauderale. Will keep you updated on our cruise. Love to all.

November 9, 2017

I became a SENTE-MENTE® Ambassador and I’m often asked how I got involved with an Italian movement. Below I posted the seven pillars of the SENTE-MENTE® model and after reading them, you will understand why.

Their way of thinking and mine are exactly alike. I have been teaching these seven pillars and so was Letizia Espanoli, without ever knowing each other, for a very long time. After learning about their seven pillars, through the Grace of God, did our paths cross and a friendship and a bond was created. SENTE-MENTE® means so much to me, because it represents my life and the path to finding your inner peace.

The SENTE-MENTE® experience is a theoretical / experiential day to increase motivation, experience the Seven Pillars of the Sentimental Project and "feel" the strength of this cultural model

SENTE-MENTE® Day will be coming to the United States in April of 2018 and you will be taught the Seven Pillars of SENTE-MENTE®. I hope you can join us. The seven pillars

The SENTE-MENTE® model is based on seven important pillars

LIFE DOES NOT END WITH THE DIAGNOSIS

Too often you hear about dementia and chronic illness in a negative and dramatic way as if a person's life ended at the time of diagnosis and this is exactly what is being transmitted to family members who live in advance their loss of dear ones, as if from that moment on, the person they knew no longer existed. It is true that dementia brings away memories, memories, abilities but the person still exists, especially SENTE, and there is alive in him/her an EMOTIVE intelligence.

With this intelligence you can still relate to him/her, live moments of joy, find new ways of communication (social relationships, dance, music, exercise, laughter).

Various scientific studies demonstrate how the ability to experience emotions and perceive those who are next to it remains intact. Harry Urban says " I feel your emotions and the mirror "

HEARTMATH

Heartmath's neurocardiology studies show that in communication, especially when we interact with someone, we must not forget that our body, mind, and heart generate an electromagnetic field that will have a positive or negative influence on who is next to it.

It is possible through specific exercises to bring our heart to a state of coherence.

POSITIVE COMMUNICATION

One of the key aspects of this project is the importance of understanding "behavioral disorders" as forms of language. When some of the thought functions "turn off" the person searches for other ways to communicate.

The person we "define" aggressive, agitated, angry, or weeping may react to a need, request, emotion, or discomfort:
- an environment that annoys or disturbs;
- a physical illness that cannot communicate;
- an emotional need that you cannot express.

FROM BODY TO MIND AND FROM MIND TO BODY

The relationship between mind and body is bidirectional.

By acting on the body, we can get to the mind by shutting down the biochemical model where it usually works to eliminate the symptom with pharmacological therapies. Each symptom is a message and should be welcomed and understood.

First, the chaplain must undertake this path. Very important studies have been written in these years about it.

POSITIVE PSYCHOLOGY

Seligman's studies show that it is possible to train the mind to have a positive vision able to see in the difficulty of the illness still chances of love and presence . The ability to look at what's still there and not in what's gone and it's okay.

LAUGHTER AND INNER SPIRIT OF LAUGHTER

Laughter is the engine with which the individual enhances his emotional intelligence and helps to pass through the pain. By developing the inner spirit of laughter, we learn to get in touch with others and with the welfare universe. This connection allows you to understand that nothing is perfect but everything is constantly improving, so the important thing is to get a change .

CONTACT

Studies show the importance of not only physical contact, such as embrace, caress, massage, but also the ability to relate with gentleness, gentleness, tenderness, kindness and will to care for the other with authenticity.

Being a powerful therapeutic tool is a right for the person and we must have the courage to change and be unique.

November 8, 2017

Everything is right in the world when you sit back and listen to a Kenny G Christmas album. I am zoned out on the spirit of Christmas and one happy little boy. You can have you turkey, but give me a ho ho ho any day.

This year I am seeing the goodness in people and trying not to look at the bad. We are making strides in dementia awareness, not as fast as what we want, but it is so much better than it was thirteen years ago when I was diagnosed.

We are beginning to learn how to live with dementia and just not accept the way it is. So many people tell me they are happier now than they were for years. Everyone isn’t happy, but so many of us found out that there is life after your diagnosis.

We may not be any closer to a cure, but we have learned so much about dementia and how to treat the symptoms with non-medical means. We are talking about dementia and not keeping it closed behind closed doors.

Maybe it is Kenny G, but I am feeling wonderful today.

November 8, 2017

If you don’t believe there is Life after your diagnosis, you will be after returning from our 7-day Dementia Friendly Cruise to the Caribbean. I waited for so long, and dreamt about taking a cruise, that I thought it would never happen. I only wish all my dementia related friends could join us and my Sente-Mente® family.

My Italian friends will be in the States from April 12th to 20th 2018: and intend to organize an American Sente-Mente® Day with American organizations against dementia and a laughter yoga basic course...

As a Sente- Mente® Ambassador, I will be spreading the word and helping to get as many groups and organizations to join us in our fight against Dementia Awareness. The World is trying to come together and fight the stigmas and myths concerning all forms of dementia. Our American Sente-Mente® Day will prove that two countries are willing to work together and begin to build the World without Dementia.

I am asking you to join our Revolution and fight for Dementia Awareness. My arms are going out to all countries in the Hope you will join us. I would like to see widespread news coverage about our Revolution and less about the Hate that is being covered.

November 8, 2017

Yesterday I spent the day working at the voting center. My “job” was to help and explain how to place your ballot into the scanner to be recorded. It was a long day for me but one I absolutely loved. I got to meet and great so many wonderful people.

The one thing I observed was, that there was no sign of hate or distrust. They were doing their civic duty and not one person left without a smile on their face.

November 6, 2017

When you look into your soul and can see and feel the beauty that surrounds you, you are part of the Revolution. When you leave your hate and prejudices at the station and board the train heading to a better life, you became part of the family.

Our Hopes are not based on finding a cure but rather on destroying the myths and stigmas associated with any form of Dementia. We want to be treated as a person and not someone with no respect or dignity.

Be part of the group that talks with us not at us. Listen to us and try to understand the fears we have knowing you can’t fix them. Let us dream without telling us we can’t do that. Become our friend and not our babysitter.

November 5, 2017

This post is for those living with dementia and struggling with their life. You are not alone, we are walking with you. I walk in the caverns of dementia and feel the loneliness you are feeling.

I don’t fall into these pits, I jump in looking for someone to help. We need each other if we want to make it to the finish line. I will allow you to read my mind and realize there is life after your diagnosis.

I will teach, you to smile and we will be laughing when we crawl out of that hole. You will see the light once again and the struggle won’t be as great. It may be happen overnight but I will never give up on you, your life is worth it.

November 4, 2017

I shouldn't be this happy, I have Alzheimer’s, but I am. I have found the secret to living with Alzheimer’s and not just having the diagnosis of it. When you get to understand dementia, it is no longer scary.

Sure, there are problems, but that is life. You can fight the changes, or live with them. Understanding the changes will help you avoid the bad ones and find ways to get around them.

Smile at all the pitfalls and make being happy your highest priority. Laugh a lot even when something isn’t funny. You can never be sad if you are laughing. Find your inner peace and live with it.

Each of us has that something that gives us comfort and don’t be afraid to share it. Once you found your inner peace and learn to once again love yourself, you will be able to say, I shouldn't be this happy, I have some form of dementia, but I am.

November 2, 2017

We can bring happiness to whatever color the day may be. On the darkest of days, when you are at you lowest, we can help you see the light and offer our hand to help you back up again.

We don’t have names or get recognized for the good deeds we do because simply, we don’t need the recognition. You may not even know us, but you hear our voices.

You may hear, never give up or maybe just let it go and you may even get angry when you hear our voice, but that voice will make an impact on you and if we said it right, put a smile on your face.

November 2, 2017

Do you make the same mistakes in life, or do you learn by them? If you are living with dementia and have a bad day, do you try to figure out why? How about a good day, ever wonder why it is so good?

I believe there is always a reason why things happen, and we just need to figure out why. Avoiding the things that contribute to a bad day and encouraging the things that create a good day, will lead to a better life, living with dementia.

October 31, 2017

I reach for the stars, and sometimes, I believe I touch them. That is when one of my dreams come true. My dreams are simple, but powerful to me. I dream of beautiful things and sometimes I see them, that is when I know I touched a star.

I dream of a World Without Dementia, not a cure, but a world where we can live without the stigmas or myths associated with dementia. We no longer have the need for medications because we found other ways to deal with the symptoms of our disease.

We no longer need to hide from dementia because we are strong enough to fight it. People understand us and love us regardless the flaws and insecurities we have. Most of all, we are no longer different.

October 30, 2017

How far have you ever looked into yourself? You live this life for a relatively short period of time, then you die. What happens next depends on your beliefs. Do you move onto another life or does the lights simply go out?

More importantly, will you be judged by the life you lived, or will the screen be wiped clean and you just start all over. Is it important how you live your life, and will you be accountable for all the misdeeds you done.

Personally, I believe I am walking toward a better life and it is up to me how much better it will be. I want to be judged by the accomplishment I contributed to a better life and not by the petty things in life.

October 28, 2017

Hazel gave me the go ahead for my office.

October 28, 2017

There are times when the world is closing in and you are walking on troubled waters and you hear the whispered words of wisdom, “Let it be’. Whether you follow that advice or not, is entirely up to you.

Sometimes it is so hard to “let it be”. You know you should, but another little voice is telling you that if you “Let it Be”, you are forgiving and maybe forgetting whatever is troubling you.

Before you decide which to do, think in your mind, what will give me peace of mind? Think of yourself and not the problem. You will feel a warmness and the most peaceful feeling come over you. The problem may have not gone away, but you were given the strength to handle it.

October 27, 2017

This year the Christmas gifts I am making are dementia friendly to make. The supplies to make them only costs a couple dollars and are all simple to make. I am doing this, so you can see the things someone living with dementia can make.

Maybe I will do a short video explaining how to make each one and maybe motivate somebody to try it.

October 27, 2017

Hazel drug me out to go up and down aisles looking at Christmas ornaments, so I was only able to make two things today. I think I need to make 8 more of the glass candle holders and those will be done, but I really like making the snow globes. I bought so many figurines to put inside them.

I’m getting a good jump on making Christmas gifts this year, because our Dementia Cruise is only a couple weeks away I will lose some time. I’m hopeless when it comes to the Christmas spirit.

October 27, 2017

It’s Friday and the one-day Hazel is brave enough to take me out shopping for craft supplies. Most stores are putting out their Christmas displays, and I get so many ideas from them.

I walk around humming my Christmas songs and ignoring the people that are staring at me. I often need to help customers decide what to buy show them how to make something. Hazel puts her foot down and won’t allow me to wear my Santa hat. Bad enough I’m singing, let it snow, let it snow.

October 26, 2017

I started today to decorate the top of the hutch on my desk for the Holidays that are coming. I better get a move on to turn decorations for all those empty spots. I also have what I call a pie cabinet sitting beside my desk, where I store all my valuables that I don’t want Hazel to throw out. She calls it my junk cabinet, but the top also will be where I can place some of the Holiday gifts that she doesn’t fall in love with.

So far, I placed some fake snow, but not much else, on the top. I may need to sneak out at night and cut down some of my neighbor’s tree branches, so I don’t run out of wood. I get so excited this time of year because I forget I have Alzheimer’s and concentrate on making Christmas gifts.

 

October 26, 2017

Today Hazel had to go to work for a couple hours, which left me alone at home, unsupervised. The last thing she said was, “I won’t be gone long, try to stay out of trouble”. That took all of the fun being left alone, so I decided I better get back to Christmas gifts.

Here is what I got done, unsupervised.

October 26, 2017

You can do it if you really want to. I don’t care if you have dementia or any other illness, you can be happy. Some days the weight of the world is pulling you down and life looks so grey, but you do have blessings.

You have value but may not be able to find it due to the chip you have on your shoulder and your attitude. Are you willing to change and smile again? The world is not as ugly as it appears and is patiently waiting for you to make that step and once again be happy.

The change may not make your situation any better, but it will make you stronger to handle it. It takes less muscles to smile then it does to frown, so relax, laugh and enjoy your life.

October 26, 2017

I am living the feel-mind ® experience, and finding out that the sky is not my limit, only my mind is. I am learning how to control my mind and live beyond my diagnosis.

After living with dementia for 13 years, textbooks state I should not be able to do the things I do and dream of a brighter future although I am living with a terminal disease with no cure in sight. I am not afraid of the changes that are occurring to me nor the things I have lost in my life.

I have grown so much since I heard those words, “you have dementia, of the Alzheimer’s type”. I was forced to look within myself and find my limits and then find ways to adapt, so I could go beyond those limits.

I found faith in myself and don’t fear making a mistake as long as I learn from it. I found it is easier for me to laugh at the cards that life dealt me, and stop crying about them. I may not have control over my life, but my feel-mind ® experience taught me how to steer.

October 26, 2017

I finished several more alcohol ink candle holders, and so many more to go.

October 25, 2017

When you fall into a black hole, how do you ever get out? One way is for someone to jump in with you and help you out. Another is for someone to lead over the edge and extend their hand. The third is for you to find your own way out.

It takes a special person to jump in, look for you and then help you out. Most times the people that do that spent time in that black hole and knows what it is like. The person leading over the hole has a good heart and only wants the best for you.

When you find your own way out of a black hole, you turn around and go back in looking for someone that needs your help. You get so hooked on helping others that you set aside the demons in your life so you can help.

October 24, 2017

I now have enough jars and craft supplies to be snow in for a month. I have so many jars in different shapes and sizes that I am dreaming about making something out of them that I started out stacking them in a cabinet in my office, but they are now overflowing around the floor.

I plan on making snow globes, glass ornaments with battery candles in them and using alcohol ink to decorate some of them. I will be in my shop with wood chips flying around, turning bases and tops for these jars along with my Christmas music playing.

Don’t tell me you can’t enjoy your life regardless what ailment you have. Some of the crafts I make requires you to put a drop of alcohol ink into a jar and spread it around with canned air. There is no pattern to it, it is what it is.

Stay active and learn to laugh again. You were given life to live to the fullest.

October 23, 2017

We go beyond our limits and over our walls once we connect with the feel-mind ® experience and believe there is life after your diagnosis. We begin to dream again and start to use our imaginations once again. We walk away from the academics of dementia and begin to do the things that always brought joy to use.

We can never forget we have some form of dementia, but we can push it to the back of our minds and start living once again. When you get diagnosed, your life stops, and you only think about how your life is changing.

Someone needs to shake you into the feel-mind ® experience and convince you that you can live many years beyond your diagnosis if you learn to not allow your life to stop. I am a firm believer that you don’t go from diagnosis to late stages overnight unless you give up and allow it to happen.

Age and other medical conditions plays a factor in this, but I am talking to the millions of people that are not in their late stages or may not even be diagnosed with some form of dementia. We allow our minds to believe in statistics and not the will to live.

October 23, 2017

Hazel put in an order for ten of these. I better get turning.

October 22, 2017

Let it be, words of wisdom, but how many times do we follow these words of wisdom? We feel we were wronged but we don’t seek justice, we want revenge. We let these bumps in the road get control of our lives and we become miserable seeking revenge.

Does let it be mean we forget, or does it mean we are taking a stand and not letting it bother us anymore. It doesn’t mean we are the better person, just the strongest. We should never give up on seeking justice but remember there is a fine line between justice and revenge.

Let’s get back to togetherness and try to get over our differences and become a world of Hope. We can do this if we learn to let it be.

October 21, 2017

The Christmas spirit is in full swing now, and I’m actively making Christmas gifts.

October 21, 2017

You can’t image how wonderful it is to get a video call from another country to laugh and just say hello. I get several each week from Letizia Espanoli and members of our Sente-Mente family from Italy just to renew our friendship and wish each other well. The bond that was created when her and Deborah De Angelis visited me will never be broken.

Deborah often send a video when she reads one of my posts and senses I may need a hand. I often said that our dementia community is closer then blood relatives and getting a video call from Italy proves there is love all around the world. We just need to put our political beliefs aside and think with our hearts.

October 21, 2017

There are days when you are alone and a captive audience of your thoughts. You don't want to think about what is happening to you but you do. The worst possible things pop into your mind and you start to lose control of your emotions. You should be scared but your not because so many times you have walked alone on the path of dementia.

There are ways to control your fear through breathing or perhaps listening to music and let your mind take you some place pleasant. Early on it is important to find ways to control your fears. Once you found what works for you, you are back on the right path and living a better quality of life.

Take the time to learn ways to control your life. Don't accept things just because you have some form of dementia.

October 19, 2017

I have Dementia so I keep notes. Everywhere you look, I have a note posted to remind me of something. Every now and then Hazel tells me I have to clean up my clutter and I do. That is when I get my, what was I thinking moments. One of my important notes I wrote, so I won’t forget, simply said…Sometimes I get lucky and forget. Now what in the world was I thinking?

I wish I could remember why I wrote this. I often thought of taking all my notes and put them in a shoe box for my family to read after I was gone. They could all sit around and laugh and remember that crazy old man.

October 18, 2017

Today we were without power for several hours while the power company ran a new service to our house. It started with a storm coming through a week or so ago and a wire was hanging close to the ground. We called the power company and reported it and they came out to check on it. They found out it was my Comcast wire that was pulled loose from the house which Comcast came out to repair.

While the power company was here, they noticed that my electrical meter box was also loose from the house and since they replaced the meter several weeks earlier they would replace as a customer service, free of charge.

To make a long story short, they found the wire leading into the house also was bad and decided to replace everything at no expense to me. If I would have had an electrician do the work, I would have received a $6500 bill to pay.

My faith in humanity was restored and my belief in kindness was overwhelming. The world looks cynical at times and it only takes an act of generosity and kindness to fill your heart with love. Thank you Pennsylvania Power and Light, PPL for the work you did and pulling me out of my darkness.

October 18, 2017

How many times have you heard about the ten absolutes of dementia and still forget to follow them. Your life and the life of your loved one would be so much easier if you would practice these.

1. Never Argue, Instead Agree
2. Never Reason, Instead Divert!
3. Never Shame, Instead Distract!
4. Never Lecture, Instead Reassure!
5. Never Say "Remember?" Instead Reminisce!
6. Never Say, "I told you..." Instead Repeat and Regroup!
7. Never say, "You can't!" Instead Find Out What They Can Do!
8. Never Command or Demand, Instead Ask and Model!
9. Never Condescend, Instead Encourage and Praise!
10. Never Force, Instead Reinforce!

October 16, 2017

It’s beginning to get dark around 6:00 and it won’t be long before we need to set our clocks back. The seasons are changing and my biological clock will be getting all messed up.

I talk to many people living with dementia and they tell me that the changing of the time doesn't affect them, but it takes me several days to adjust to it. The weatherman said we had a possible frost warning tonight and I laughed.

The way the grass is still growing, this old groundhog predicts six more weeks of fall weather.

October 14, 2017

The excitement is building up for our Dementia Friendly Cruise in the Caribbean in several weeks. This is a once in a lifetime experience for me and I plan on enjoying every minute of it.

Mingling and talking with some of the most respected advocates for dementia aware is priceless to me but I am really excited about sitting on the deck of the ship and soaking in the power of the ocean and the raw energy it has.

I want to make that emotional connection with nature that gives me the strength to carry on. I also heard the food is good.

October 13, 2017

Several more ideas I made for Christmas gifts. I'm thinking about putting a candle in the vase and maybe a Christmasy ring it.

October 13, 2017

Living with dementia, you go through some very hard times. The feelings of loneliness overcome you and you can’t explain why. You are surrounded by people that love and support you but something is missing.

You may feel smothered or isolated and lost control of your life. You may begin to mourn the things in your life that you lost and wonder what you may have done wrong to deserve this.

The emotions of living with dementia is the hardest part of this disease. You feel things that are not there and tears begin to fall for no reason at all. I also forget things, but who cares, I can’t remember them anyway.

October 12, 2017

Do you have a dream, and are you following it or is it slipping away from you? I have many dreams, I dream of making Christmas gifts and watching the smiles I get when I give them away. Woodworking is good for me and helps me live with Alzheimer’s.

I dream about our Forget Me Not Cookbook and how I can make it interesting with different recipes. The work it takes for someone living with dementia to design and input all those recipes is beyond imagination. I exercise my brain by doing this work of love and push myself into self-motivation to complete it.

I dream of creating more Memory Cafes so we can help more living with dementia. I have a dream of Memory’s Cafes located in every care facility for the residents that live there.

Dreams are like mountains to me, I have one and want to climb it so I can find another one. My biggest dream that I am working the hardest on is, a world without Dementia. I doubt I will be able to complete that dream but I do think I will see a world where we can live with dementia.

Don’t be afraid to have dreams and don’t let the fact that you have some form of dementia from dreaming them and following them. Only you can make your dreams come true.

October 11, 2017

Who wants to walk with me?

October 11, 2017

Your world is so academic, everything must have a reason. My world on the other hand is magical and unstructured. I and free to be myself and no one questions my antics. When you speak of dementia awareness, you speak through the academic point of view and not of the person walking down the path of dementia.

You talk about statistics and how close we are to a cure. You give Hope with a promise of a cure on the horizon and I give Hope on living another day with our dementia.

I try to have you reach the magical feeling we have within ourselves and use that to overcome any obstacle that comes our way. I don’t tell you everything will be ok, because we know it won’t. I tell you to never give up and look for a way around what you are facing. Nothing academic about that, just pure common sense.

October 10, 2017

Be ready Letizia Espanoli and Deborah De Angelis, I will be around to pick you up, I want to see the hills of Italy.

October 9, 2017

It always seems whenever you think you are reaching your breaking point, life dumps something else on you. You may think you know and understand the person you are caring for, then they will do something different which upsets the apple cart.

Do you break down or find the strength to handle it? I will tell you what most people likely will do. You will put on your big girl panties or pull up your britches, and deal with it.

Now what happens if you are the person living with dementia and you think you reached your breaking point and you feel like you lost another part of your life. I reached that point many times and stopped worrying about the things I previous lost and begin to worry about what I think I just lost.

I think I do this so I don’t give up and try to figure out how I will handle this new change. So many mysteries of dementia need to be uncovered.

October 8, 2017

Twice today a memory of long ago came rushing back to me. It was when I was given a candy bar in August and told not to open it until Halloween. That was when I walked by that tape up box with my brand new Christmas tree laying inside.

October 8, 2017

What’s the scariest part with living with Alzheimer’s and I’m yet to decide. I have found ways to adapt to the changes, that they no longer scare me. The speed bumps are getting higher and I’m slowing down but I still feel like I have control over my life.

I don’t fight my disease but roll with the punches and try to find ways not to get punched. Many are finding the secrets to living a happy life with dementia and living well beyond their disgnosis.

October 7, 2017

I don’t care if it is in the high 80’s and feels like Summer, I’m getting ready for Christmas. Most people are getting ready for their flu shots but not me, I got a giant shot of the Christmas spirit today. Hazel took me shopping today in the hopes it would quench my thirst and stop my whining but the only thing she saw, was me walking out of the store covered in glitter and singing my heart out.

I had to look at everything and get everyone I past into the Christmas spirit. Sometimes she would sneak away and pretend she didn’t know me until I yelled, Hazel look at this.

October 6, 2017

Norm Mac came up with a brilliant idea. Music is wonderful therapy for those living with any form of dementia and having a dance would certainly bring back some memories.

Years ago, Norm gave us the idea of Memory Café’s and I can tell you they are a huge success. Now he is planting the seeds of Purple Angels Dances and I love this idea. You would not be required to dance but could attend just to socialize.

I am in the process of starting Memory Café’s in several local care facilities for the residents that live there and I believe a dance theme would work out wonderful also. I am interested in hearing your thoughts on Purple Angels Dances and if you would like to organize one in your area.

October 5, 2017

With all the sadness in the world, Hope is trying to pull us together and make us realize the importance of each other. It takes a tragedy to make us realize that we need to put aside our pity differences and pull together.

During a tragedy, we don’t think, we just react to the circumstances and sometimes put our own lives in jeopardy to help someone else. Maybe we think too much and should just let our hearts guide us.

Our hearts know better than our brains, what we are made of. Look into yourself and find the soul you were given and follow what it is telling you. No government will give us a better world, only us will find the gift we were given and start to use it.

October 1, 2017

What is Hope? I believe it is that spark that wants you to be alive and not just living another day. Hope makes you want to make things better not only for you but everyone around you.

What happens when you lose Hope? The world goes cold and dark and you just want things to end. We can’t allow this to happen so we spread hands and try to bring Hope back into your life.

There is enough love in the world that this happens without government intervention and support. You can’t buy Hope or have a fund raiser to get it, you need to reach in your heart and share it.

Hope comes in all colors and nationalities but no matter what language you speak, Hope is always the same. Share a little Hope that you have in your heart and let’s make this a better world to live in.

September 30, 2017

Today Hazel and I visited Signature Senior Living which is an Assisted Living and Memory Care Community located in Lititz, PA. We toured the single and double bedroom units and found the resident services and amenities beyond my expectations. They have a movie theater which shows movies twice a day, a spa and a wonderful activities room. On a wall they have a board that has all the times and activities offered that week. I was thrilled when I saw all those activities.

They have a special room for any religious service that the residents may desire. They offer any amenity that anyone could ever want and the facility was beautiful but more importantly, it felt like home. Every staff member I saw, was wearing a smile and made us feel welcome.

Now I wanted to visit the residents living beyond the locked doors in the Memory Care Unit. Each unit was like the Assisted Living section with their name on the door and a shadow box hung beside each door and encouraged the resident to put something in the box to help them identify their room. I saw people sitting outside on benches in their flower gardens, enjoying the beautiful day.

I watched a woman in their dining room straighten up the chairs and was told she does that after every meal because she enjoys doing it. They encourage the residents to do the things they enjoy. Care facilities have come a long way in caring for the emotional wellbeing of the residents and would suggest everyone to check out Signature Senior Living.

September 30, 2017

We all have days when it seems like a dark cloud is following us everywhere we go. We complain but never look for that silver lining so many talk about. That dark cloud may be following us because of our attitude or the way we treat people around us, but it is trying to tell us something.

You may have to walk around that dark cloud until you find that beam of light that lets you out, but while you are looking, you may find that silver lining so many of us have found.

That is your reward for removing that dark cloud from your life.

September 29, 2017

What are you looking at, a day doesn’t go by that I’m not asked that? I just smile and keep on looking. I’m looking for something to brighten up my day. I started my day by looking real hard today.

I was working on our cookbook last night and like magic it disappeared, all 605 pages of it. I have no idea what I did but I looked in every folder on my computer and could not find it.

I tried every trick I knew to recover it but went to bed thinking it was gone and wondering if I wanted to start all over again. Giving up is not in my life so after a restless night, I was given Hope.

The Word document was gone but I saved it in pdf format and put it up in the cloud so Patty could proofread it. Sure enough, when I checked, there is was all 605 pages. Now I just needed to download it, convert it back into word format and pray everything looks ok.

My little voice in my head asked me, hey dummy did you learn anything from this experience. I can’t say I did, but I’m now backing up that file in three different places. The sun came out and I’m happy again.

September 29, 2017

Walking down the path of dementia I stop and pick up what appears like Hope to me. After closer examination, I discover it is only false Hope and toss it aside. What exactly is false Hope?

These are the promising cure’s we hear about almost on a daily basis. They stop short of being a cure, only to confirm that very little can be done for us. They lift our spirits then breaks our heart.

Many cannot believe I don’t get excited every time a new promising breakthrough develops. Over the last 13 years, my heart has been broken so many times that I now believe a cure will never be in my reach.

Stop showing me false Hope and show me ways to live with my disease. I will gladly support research that helps us live a better life.

September 28, 2017

Do you encourage your loved ones living with dementia, to express their imagination? I do that with my woodworking and any crafts I might do. I never follow a pattern because I no longer can follow directions and let my imagination dictate the end results.

I love looking at the clouds and seeing different shapes and talking about them. I talk about my days growing up and may embellish them at times, but I’m not lying, it’s how I imagined they were.

September 28, 2017

Living with dementia, we have a need to feel safe and be protected from judgment. We need a place where we can go and open our hearts and not have anything we say, repeated outside our group.

When Forget Me Not was launched on February 9, 2013, I was determined to create a group where we felt like we were family and we would have a safe haven to talk about our problems.

We grew and our wonderful administrators ensure that gossip is kept at a minimum and anything we say is kept inside our group and never repeated on the outside.

If anyone shares information they heard within the group and spreads it outside our group, without the owner’s permission, they will be removed from the group. I have a standard policy that anything I write may be shared, but that is only for what I write.

September 27, 2017

I think I may need to turn a lid for the vase, but I think they will make a good match.

September 27, 2017

Today I was in Bologna, Italy with Letizia Espanoli and got to meet some more of my extended Italian family. How in the world did I do that and the answer is simple, we had a video call.

My world is coming together because I allow it to and I am getting to meet some of the most loving and friendly people in the world. Our lives are so different but we are the same.

September 27, 2017

I’ve been lonely, I’ve been angry and so afraid. I’ve lived in denial and came close to losing my faith and spent many days walking on the dark side of Alzheimer’s. I’ve learned about myself and what is important to me.

This changed when I gave my life to a higher power and was introduced to the light in the world. There isn’t a medication powerful enough to give me the life I am living and give me the time to help others, that I seem to have. I have learned to put myself in the background, and others before me.

I still live with Alzheimer’s but it no longer controls me. I smile, I laugh even as Alzheimer’s robs me of my life. I’m not afraid because I am on the right path.

September 27, 2017

Do you have a reason to go on, or do you live one day at a time? What I’m trying to ask is, do you have a purpose in life or do you just allow things to happen. My purpose in life has allowed me to live well beyond the average life span of someone living with Alzheimer’s.

I truly believe in the wonders of life and explored territories most don’t even know exists. I looked deep within my soul and tried to make changes to make me a better person.

I found the necessity to help each other and put aside any prejudices that I grew up with. I saw the dark side and also saw the light. I chose the path I wanted to follow and I’m being rewarded with a blessed life.

September 26, 2017

Today I grabbed a hunk of the white birch that was given to me, and thought I would make something. I think if I put some pine cones in it, might make a center piece.

September 26, 2017

I live an Inka Dinka Doo life. How do I know that and the answer is simple? For some reason only God knows, I started to sing this song by Jimmy Durante and for some reason I felt like it.

Now don’t get excited, I remembered to take my medications and didn’t sit out in the sun to long but when you are living with dementia, you say and do the dumbest of things.

Lately memories of very long ago started to be refreshed in my mind and to be honest, they put a smile on my face. I read a book one time that told me how miserable my life is living with Alzheimer’s, and thought to myself, I won’t trade my life for anything, not even that magical cure we are hunting.

I found pre-heaven, and I like it.

September 26, 2017

Ho ho ha ha ha, let’s start this day with our hands waving above us and laughing until all the frustrations leaves our body. Have you noticed it is almost the end of September and one-month closer to Christmas? If that irritates you, obviously you did not take my advice of ho ho ha ha ha.

I have been having so many good days that I’m beginning to get a false impression of dementia remission. You ride a high when you see your dreams becoming a reality and you believe all the hard work is paying off.

I’m not kidding myself, we have a very long way to go BUT, we are moving forward. At our Alzheimer’s walk, people were laughing, hugging each other and displaying the fact they we are together in our fight against all forms of dementia.

We are dropping our pity views on dealing with dementia and focusing on the person living their disease. The train is picking up momentum to take us to a better day.

September 25, 2017

Today I had the privilege to speak at a Forum at Luther Acres in Lititz, PA raising dementia awareness. The room was packed with people eager to hear my story and learn about living with dementia. I had some of my wood turning projects with me and preached my message of Living Beyond Your Diagnosis.

We had a question and answer session with many valuable questions being asked. I was so thrilled with the interactions of the audience and the discussions we had at the end of the meeting.

Pudding on the cake is when they asked me to be involved in a Memory Café that we will start the beginning of November, at Luther Acres, for the residents that live there. My dreams are falling into place where we can live and enjoy our life while living with dementia. God is great and I am so thankful.

September 25, 2017

I was talking to an older gentleman with dementia, and he mentioned he was so afraid. I asked him what he was afraid of and he didn't know. We go through a period that we are so scared and no one reaches out to see why we are scared.

A simple thing like listening to us and reaffirming we are safe, and not alone, helps us got over the things we don’t understand. Telling me everything will be ok does not work. In my mind, my life is bleak and the only thing I see is death.

Listening to us without trying to fix it, usually leads towards a solution. Walk into my world and understand what scares me, then take my hand and lead me out.

September 24, 2017

When is the last time you told someone, see you later alligator instead of goodbye? We now say, catchya later and to this day I don’t know why. We no longer talk hip but talk in slang.

When I’m talking to a young person, I often have the need to tell them to talk like an old person. Times are rapidly changing but I am still lost in the past. I don’t mine though because most of my friends are lost with me. Have a beautiful day.

September 21, 2017

I know it’s Worlds Alzheimer’s Day and I’ve been living with Alzheimer’s for over 13 years, but I still need to laugh and act silly at times. My life is hard and beyond frustrating and I look for ways to release some of the tension I am living by posting a joke or a picture that may make you smile.

I still need to be me and set aside my dementia awareness hat and make a fool out of myself. This is why my daughter Patty means so much to me, she will go along with me and do some of the silliest things.

We need to laugh and have others laugh with us to break up the seriousness of living with dementia.

September 21, 2017

Today Hazel was working and for some unknown reason I found myself listening to Christmas Songs. I was happily singing along when Dominick the Donkey came on and when I sang that Dominick lives in the hills of Italy, an idea popped into my head along with a question I now have for Letizia Espanoli and Deborah De Angelis.

If we visit Italy next year, would you please take me to the hills of Italy to see Dominick?

September 21, 2017

I have Alzheimer’s but I also found inner peace. I had to walk through the Hells of dementia to find my inner peace. Years of denial, blaming others for all my misfortunes and then facing the reality I have a terminal disease. I started to grow in this new life and after learning many of life’s lessons, my emotional life became strong and I knew whatever Alzheimer’s threw at me, I was strong enough to endure it.

I now love this new life and my new found inner peace. I am not walking alone and if I stumble, a hand will be there to help me up. Sometimes that hand is mine.

September 21, 2017

Can you feel the love tonight? If you can, you found your inner peace. We live in an aggressive society that has little time to enjoy the world around them. After you are diagnosed with some form of dementia, your life slows down and you begin to see the things you always overlooked.

We are looked at with pity, because of our diagnosis, but few realize, we are walking toward a better life. This is when we realize the things we are losing and start to be thankful for what we have left. We see life through a different set of eyes and start to understand the beauty of nature.

We look at ourselves and see our shortcomings and begin to rectify our shortcomings. We begin to learn how to forgive the wrongs done to us and finally begin to love ourselves. We are beginning to live in peace and harmony.

September 20, 2017

Laughter Yoga to Improve Health? It's No Joke. At the beginning, I felt silly, but then I forgot about my pain. Stretching my hands skyward, taking deep breaths, clapping my hands and chanting “ho ho, ha ha ha” while staring directly at other group members until everyone is laughing uncontrollably, took getting used to. But then you look around and see everybody laughing and smiling. It’s a lot of fun.

Developed in 1995 by Madan Kataria, M.D., a family practitioner from India, laughter yoga “is based on the scientific concept that your body can’t tell the difference between simulated and spontaneous laughter,” Kataria says. “You get the same health benefits. The yoga breathing, in combination with laughter exercises, brings more oxygen to the body and makes you feel energetic and stay healthy.”

When traditional medicine fails to relieve your pain, try laugh yoga. I am going to try to introduce Laughter Yoga at our Memory Cafes as a tool to reduce the anxiety of living with dementia. Studies prove that your sense of humor help you deal with how you live with dementia.

September 19, 2017

Walk with me, not only on the good days but those days I slip into the shadows. You will see the meltdowns I have and not just the smiles I want you to see. You will see what it is really like walking down this lonely path of dementia and not what you heard.

Some days we need to walk alone and find our safe place where you are not allowed. We are not really alone because a light is following us making sure we don’t trend to deeply into the darkness that we can’t find our way out.

Sometimes we bump into someone and without saying a word, they will lead us back into the light. We may not know this person but they make an emotional impression on us and gives us Hope.

The day may come when we finally meet this person and no thanks are needed. Some people living with dementia, walk in the shadows to give a lost soul the light of Hope. It is their passion and their meaning of life.

September 19, 2017

Today Hazel needed to go to work for a couple of hours so I thought I would grab a hunk of white birch that was given to me and turn something. I need to put a finish on it but I think I started my Christmas shopping.

September 19, 2017

I love the spirit of Christmas, 365 days out of the year. I get criticized for jumping the season and misrepresenting the true meaning of Christmas. This is the farthest from the truth you can get.

The spirit of Christmas represents love, kindness and a willingness to help others. Not the commercial version that gets rammed down our throat before and after Thanksgiving.

Neighbors actually say good morning to each other and we gather to sing and talk to each other. For a very short period of time we forget our problems and get caught up into a wonderful fantasy world.

September 18, 2017

Tears and anger often go hand in hand. Tears flow when I see or hear about the mistreatment of someone living with dementia, but then the anger flows because we allow this to happen. My emotions are mixed with showing love for the person being inflicted and uncontrollable rage at the person that would dare do this to them.

I wish I could wrap my arms around everyone living with dementia and let them know they are loved. You are not alone my friend, we care.

September 17, 2017

How many people enjoy the love they receive from another country like Italy. Since I met Letizia Espanoli. Deborah De Angelis and was introduced to the loving people that live there, my life has changed and a gift of light now encircles me.

I found the true meaning of friendship and understanding. We often make video calls just to laugh and extend our hands in support and friendship. There is no language barrier because we don’t use words to communicate, we use the emotions of love and friendship.

A night doesn’t pass that I don’t dream about sitting on an Italian hillside with my Italian family and feel the emotion that is in the air. When we end our video call, I feel a tremendous loss but I’m reminded that the bond we created will carry us onto our afterlife.

Dementia opened up another world to me, filled with love and friendships that we never be broken. We will never walk alone as long as we have Family.

September 17, 2017

Halloween is coming and we all like to get scared. Living with dementia we have a different type of being scared. We would never pay to get scared nor do we ever enjoy it.

Would you pay to hang your toes over a cliff, deciding whether to step off or not? We often reach the point we just want it to end and that cliff looks so inviting. When you see something scaring afterwards you know it is fake, but with us, it is real.

The shadows we see follow us everywhere, we can’t pick a time when we want to see them, our dementia picks the time and place. The more you understand the emotions of dementia, the better care you can provide us.

September 16, 2017

My first alcohol-ink project turned out pretty good I believe. A buck may make a nice gift.

September 16, 2017

So many of my friends are entering the next stage and my needle seems to be stuck on the stage I’m presently in, that it seems so unfair. I can’t explain it nor can my doctor but it seems I was one of the chosen ones assigned to raising their voice for everyone living with dementia.

I acquired this passion for life that it has driven me to the point that it is the first thing I think about when I wake up, and the last thing when I go to sleep. Hazel tells me she often hears me raising dementia awareness in my sleep.

I know my window of opportunity is closing but that little voice tells me to ignore the pain, you have work to do. I don’t consider it work because I spend so much time living in the dark side of dementia, it no longer frightens me. I believe my passion for the dementia community goes well beyond calling myself an advocate. I’m not looking for a cure, I just want everyone living with dementia to like themselves and get the most out of their life.

September 16, 2017

It’s like starting over. You get you diagnosis of some form of dementia and you think, OMG what am I going to do.? You are naturally scared, thinking, what will become of me. You hear voices around you that are telling you that everything will be ok and find out that they are your future supporters.

From the moment you hear your diagnosis, these voices are there, you just might not be willing to hear them. It takes time to adjust to this new life, that you will be entering, but it is one that you can make as pleasant as you want.

It is one that will take a lot of hard work on your part but with the knowledge you acquired from your old life, and the help of your supporters, you can feel however you want. It’s like starting over.

September 15, 2017

I live with Alzheimer’s but believe my life will go on forever. I have so much work to do bringing the World of Dementia together and speaking as one that I don’t have time worrying about living with dementia for over 13 years.

I see us putting aside out selfish ways and extending the hand of friendship all over the world. It won’t happen overnight but the light of day will always outshine the darkness of dementia.

Will we live longer, probably not, but we will learn to live with our disease and not be afraid of this new world we are entering. We will have each other and never be alone again.

September 14, 2017

We are trapped in the World of Dementia without any escape and have a choice to make. We can be afraid and miserable the remaining part of our lives, or we can explore this new world and see what it offers. It has its dark side and many of us travel there, but it also offers you the chance to see the true meaning of life.

Here you get to realize what is really important to you and once and for all, you find everlasting inner peace. You reach a calm in your life that many will never find.

There is no pretense here, “it is, what it is”.

September 13, 2017

I started my day with a video call from my Sente-Mente family in Italy. A wave of people sitting on a hillside, on a beautiful day, singing, laughing and allowing me to join in on their emotional meeting with me.

How I wish I could get a group of people, here in the States, to join me on a hillside and enjoy the life we were given. Wouldn’t it be great to raise our voices as one, on a beautiful sunny day and offer our thanks for the life we are living?

I will dream on this and find a way for it to happen. Letizia Espanoli and Sente-Mente has built a world of love within me with their beliefs. Some day we will be reunited in the afterlife and together we will build this wonderful and beautiful would we dream about.

September 12, 2017

If you had the choice of taking a pill, knowing that the side effects may be worse than the benefits, or finding another way to help alleviate the symptoms of your dementia, which would you chose?

I’m not talking about a pill that would cure you, because presently there is none. I’m talking about caring for the frustrations, aggressiveness or maybe the depressions that go with living with dementia.

Unfortunately, we are never given that choice, we are given a prescription and a reminder to return in 6 months. Ways are being found to treat the mind without medication. Remember I said treat the mind, not fix it.

Caring for the mind, to me, is finding ways to live with your disease verses taking a pill to mask the problem. So many things like laughter or simply changing your attitude to your disease will help get you through the day.

There has to be a better way to treat dementia, and I believe ways are being found.

September 11, 2017

It is so hard to fight the frustrations, living with dementia, and not being able to do the simplest of things we used to do. The feeling of having no self-worth goes through your mind and you feel so helpless. Our caregiver may give us directions on how to do something, but we have trouble comprehending what to do.

We feel so stupid and may even express those thoughts to you. You may realize what is happening and try to make us feel better, but most people that care for us will tell you that no matter what you say, will not make us feel better.

I believe most of us start to realize the we cannot follow directions without screwing up, at least that is the way I feel. I found that to be true with my woodworking. I can’t follow plans when I’m turning something, usually I just put a hunk of wood on my lathe and see what I end up with. Just don’t ask me to make two that look alike.

September 11, 2017

Yesterday I got a wonderful gift of a wheelbarrow load of white birch wood from a neighbor. He knows I enjoy woodturning and thought I could make good use of it. I looked at this pile of wood and saw so many Christmas gifts.

September 11, 2017

Today I went outside and turned around to go back inside to get a jacket. The signs are present, summer is beginning to leave us and fall is arriving. This is my all-time favorite time of year, not too hot and the air smells so clean.

Living with dementia I believe you are more sensitive to the weather. My moods seem to mimic the weather and that is why I love to spend as much time outdoors as I can.

I’m sure we will see some more hot days before winter, but for now, I will put my jacket on, grab a hot cup of coffee and go outside to look into the sky on this crisp morning. Life doesn’t get any better.

September 10, 2017

As I walk down this path of dementia, I walk without fear. I am secure with myself and where this path is leading me. It wasn’t always that way, until I found my inner peace.

That was the day I accepted my diagnosis and the changes I knew were coming. I found peace and the ability to laugh again. I fell in love with life and finally started to see the beauty I have been overlooking all my life.

I gave up my life to a higher power and left Him take control over my life. I now can look up into the sky and see Hope within the clouds. My life is still as hard and frustrating as anyone else’s but He gave me the strength to endure whatever Alzheimer’s throws my way.

I still have days that I cry, but my tears are always wiped away and I can always find the means to carry on. I was introduced to the World of Dementia and fell in love with it.

September 10, 2017

Have you noticed that it is not the government pulling us together but rather a natural disaster is? When a disaster strikes, we put aside all difference of race, color or religion and pull together to help each other.

We return to what is important and get the job done. Why does it take a natural disaster to shock us back into common sense and do away with the politics of working together?

A lesson is being taught to us and I wonder if we are wise enough to learn from it. I believe more natural diseases will occur all over the world until we realize that if we want to live on this beautiful planet, we better learn to work as one.

September 9, 2017

I worry so much about people living with dementia when a natural disaster strikes. We live on a routine and when that routine changes, it affects us and our anxiety levels go way up. A simple thing like a power failure will put me into a tailspin.

If the power goes out, and it is dark, Hazel makes sure that plenty of candles are available and gets my iPod and headphones so I can put them on. I have a hearing problem so you would think that the loss of noise would not affect me but it does. The absolute silence makes me feel like the walls are squeezing in on me and raises my anxiety levels up to a danger point.

If we were in a hurricane warning area and people around me showed fear, the person living with dementia would feel it tenfold. If we had to evacuate, I would fight it because you were taking me from my safe place and I would not care if someone told me my life could be in danger.

Caregivers need to plan for the unexpected and be prepared to deal with us in a case of emergency. Don’t wait until it occurs to make a plan, winter is coming with the ever threat of getting snowed in or heavy rains causing local flooding.

Staying safe is the first thing we think about, but if you are living with someone with dementia, staying safe takes on a whole different meaning. Be prepared and know what to do.

September 9, 2017

So much hate in the world that we sometimes forget the love that is being offered. We walk down the path of dementia and only see the doom and gloom that surrounds us. We forget to open our eyes and realize that we can laugh after our diagnosis.

Times get hard and we need someone to blame for our problems so we sometimes lash out at the very people that are extending their hand to help us. This is when we need to put extra effort into what we believe in.

Don’t back away from someone that refuses your help, try a different method, never give up on them.

September 9, 2017

What a beautiful way to start my day when I got a video call from Letizia Espanoli, who is back in Italy. She had her Laughter Yoga group with her and we shared a wonderful time together. So many people sharing a common bond through laughter.

We share a love that goes beyond nationalities and found a way into each other hearts. I pray that Hazel and I will find the means to travel to Italy next year so I can meet the wonderful people of Italy.

September 8, 2017

My friend, my companion Jade. She walks with me in the deepest shadows of dementia, never complains and would give her life to protect me. I must admit that I ruin Jade, Rottweiler’s are supposed to be dangerous and scary, but not Jade.

Anyone that met Jade will tell you that she will love you to death and make you fall in love with her. We bonded from the day we laid eyes on each other and I saw protection in her eyes.

I believe that most love their pets as much as I love Jade and they will return the loyalty tenfold. Knowing that someone will never leave your side, regardless how terrifying it becomes, walking down this lonely path of dementia, gives you a sense of security.

September 6, 2017

I wish I could show you the videos I took when Letizia Espanoli, Deborah De Angelis, Hazel and I were sitting around my dining room table talking about dementia awareness. The files are simply too large to post but I could show you the magic that was in the air.

They spoke Italian and we spoke English but we communicated without any difficulty. We had just met but the love and friendship could be seen in our eyes and body language. I always say that you can communicate with someone living with dementia, without saying a word and these videos prove my point. Evan Jade fell in love with them because of the cameo she made during the video.

Language is not a barrier because you can always get your point across. We did a live broadcast to Italy and the response back was simply magical. We tore down the walls of dementia and showed that together, we can change the world.

September 6, 2017

Talk to me, don’t ignore me simply because I am living with dementia and you can’t find the words. Our world is lonely until we find our way in this new world. Your silence leads me to believe you no longer love me.

We may not be able to communicate with you, but we need to know someone cares. Give us a hug, hold our hands or maybe sing us a song, let us know that we are entering into this new world with you by our sides. Help us walk into this wonderful new life we are starting.

September 5, 2017

The pending threat of nuclear war with North Korea and the thought of throwing hundreds of thousands of dreamers into a cesspool in exchange for a wall came crashing down on me today. The world is going crazy and I want out of it. The hate that our country openly displays and the dysfunctional ability of our leadership to lead brought me to my knees. I prayed for guidance and found my solution.

I have Alzheimer’s and the ability to escape your world and find safety in mine. I put my headphones on and listened to a solid hour of Christmas music. A spirit of love and kindness traveled through me from the music and joy started to fill me and pulled the poison that your world was filling me with, and a sense of relief overcame me.

My world treated me in a way that yours never could. After I removed my headphones, the world around me was still the same, we still face a catastrophic war, innocent people will be punished but I was filled with the notion that I will be ok.

I believe this parallel world I visit is real and only for those that have love in their heart and I willingness to help each other. I will live there when I complete my walk down the path of dementia.

September 5, 2017

I now start every day with a ho ho ha ha ha. This erases any lingering nightmares I may have had and begins my day on a positive beat. I am finding many little things that contribute to living well with dementia.

I may fall into the dark side of dementia, but I find myself walking through the shadows looking for anyone that wants a hand out. I found my inner peace and want to help you find yours. Together, we can do this.

September 4, 2017

When I started No me olvides. our Spanish dementia support group on Facebook, I could not speak a word of Spanish. I have several dedicated dementia groups on Facebook, but something drove me to start No me olvides for the Spanish community. They also need a safe place to go, where they will not be judged to discuss any form of dementia.

Now I’m joining forces with Senta-Menta in changing all aspects of living with dementia in Italy. Just like the Spanish community, I fell in love with the Italian community. They opened their hearts to me with a warm welcome and I shortly became part of their family. In case you are wondering, I cannot speak a word in Italian but had no problems talking with my Italian family about dementia. Interesting my brothers and sisters in Italy did not speak English but we had absolutely no problems communication with each other although I have been living with Alzheimer’s for over thirteen years. They gave me the strength to give them Hope.

We can learn so much from each other and as a Sente-Mente Ambasador, I hope to spread their ideals and dreams here in the States. If we are sincere in creating a World Without Dementia, we need to extend our hands and hearts to other countries and work together.

September 3, 2017

With a heavy heart, I walked Letizia Espanoli and Deborah De Angelis to their car so they can begin their trip back to Italy. We had an emotional morning filled with laughter and promises of a great working relationship between our two counties.

For two days, we discussed care for those living with dementia and our desire to visit the wonderful people in Italy and stand with our Sente-Mente family in the Wow Revolution for the cultural change for us living with dementia. Together we will start this revolution and make the changes leading to a World Without Dementia.

I was honored to be appointed a Sente-Mente Ambassador and learn about the seven pillars that define Sente-Mente. I fell in love with the Italian people and their willingness to work with me in changing how people view people living with dementia.

I got emotional when Letizia presented me with the book she wrote and contained several excerpts of things I wrote. It is in Italian but Deborah read me several pages and translated them into English so I could understand. I can’t describe the honor or sense of accomplishment I felt hearing my voice carry across the ocean to another country.

We have work to do, together we will make the changes we all dream about. Letizia and Deborah may have left my country but will forever be in my heart. I am part of their team and they are with mine. We lit the fire and the Light of Hope will begin to burn brightly in our countries. Hazel and I wish Love, Peace and Hugs to Letizia, Deborah, the many Italians that showered us with love and all people living with dementia across the world. I didn’t say goodbye, just until we meet again and we will.

September 3, 2017

Here I sit awaiting another visit from my Sente-Mente friends, Letizia Espanoli and Deborah De Angelis before they depart to New York and make their return trip back to Italy.

I have grown since meeting these beautiful people and fell in love with the warm Italian people. I pray we can visit Italy next year and meet in person some of the people that found their way into my heart.

September 2, 2017

The best feeling in the world, living with dementia, is knowing you are making a difference. It makes you feel good to stand before an audience and make a speech, but doesn’t compare when you begin to see results from what you do.

You can talk about the dark side of dementia but unless you go there and pull someone out, you will never ride the high we do. I get so much help recovering from the bumps in dementia that I feel compelled to return what I received.

One of the bad things living with any form of dementia is, you have no idea how long you will be able to help. It just takes that one person to mention how much you helped them. We are not looking for thanks, just a smile with Hope on it.

September 2, 2017

I felt today, Hazel and I were part of history when we met with our Italian guests, Letizia Espanoli and Deborah De Angelis to discuss the Sente-Mente Project. We spent the day discussing how our two countries can work together to bring dementia awareness to our countries and struck up a bond between Italy and the USA.

We did a short video together and after a very short period of time, we had over 1500 views. Letizia made a video call to several of her friends in Italy and after some warm conversations, plenty of laughs, they extended an invitation to visit Italy next year and speak at several events.

We exchanged gifts and had a wonderful late lunch before we called it a day. We will meet again tomorrow morning before they need to return to New York and finish with our interview. Incredible friendships were made today and valuable information was exchanged.

September 2, 2017

I’m often asked what it is like living with Alzheimer’s and I always try my best to give a positive response. I don’t want to talk about the horrors we may see or feel, but I also don’t want to paint a rosy picture either.

I usually start with, it is a lonely life even if you are surrounded by the most loving caregivers. Your mind begins to play tricks on you and you may lose track what is real or not.

You begin to lose things, not because you can’t find them, but you may no longer recognize them. So often I couldn’t find my coffee cup only to realize it has been sitting beside me on my desk. It was always there but I never recognized it.

I believe the worst is when I am asked about a memory and I just can’t recall it. I’m encouraged to recall it by given hints to help, but it is gone. I am constantly mourning the loss of those memories.

September 1, 2017

September 1, 2017

As we progress along the path of dementia, I often wonder if we lose our values and allow our carers to take over our lives. They seem to think they know what is best for us and we start to think, maybe they do.

We begin to take over their personality and lose what was once ours. We are becoming different people but is it our dementia or our environment. I am losing things that I care about and wonder if it is me or am I unknowingly being influenced.

Living with Alzheimer’s is more than just forgetting things, we are forced to think about things we don’t want to.

August 31, 2017

I believe laughter and a good sense of humor will get you through so many of the rough spots while living with any form of dementia. I hear so often that dementia is nothing to laugh about, and I can’t agree more BUT getting away from the doom and gloom will pick up your spirits and sometimes helps you forget your problems.

You can’t have a positive attitude if you don’t smile once in a while. Don’t get stuck in the care of someone and forget that it is ok to laugh and enjoy your life. When is the last time someone made you laugh or better yet, when is the last time you made someone laugh?

August 31, 2017

I live in a small town but my voice can be heard throughout the world. Your voice can also be heard, September is World Alzheimer's Awareness Month and we need your voice to bring awareness to all forms of dementia.

Help me to raise the message that there is life after your diagnosis and so much Hope surrounds you. Tell the world what you are accomplishing while living with dementia. Let’s join hands and finally break down the walls of stigma and myths concerning dementia.

August 30, 2017

Here is my prototype of the inside-out Christmas ornaments I’m thinking of making this year. I believe maybe a snowman or tree inside the ornament and a ribbon or something wrapped around the top. Any ideas?

August 30, 2017

I feel like I could conquer the world. Alzheimer’s throws me some of the cruelest storms to ride out and with the help of my friends, I find myself in clear waters. It hasn't always been this way, I tried to hide my illness and pretended everything was OK.

It doesn’t take long to realize you can’t do this alone and you need to accept the help that is being offered. The next step is to become a mentor and begin helping others.

August 29, 2017

My desire to learn new things, even though I am living with Alzheimer’s, is taking me beyond what someone with 13 years of that diagnosis should be capable of doing. I am learning how to turn inside out Christmas ornaments and having a ball.

I first hot glued four 1-inch pieces of wood together and turned a simple design in the center of the block. Next, I pried the pieces apart, turned them around and glued then back together. This left the inside of the block hollow and only need to turn the outside into the shape I want.

In my haste the glue didn’t dry completely and came apart so I had to reglue it back together and will leave it set until tomorrow to finish it.

August 29, 2017

When some of your friends that live in Italy make a special visit to bring love and friendship, you realize how blessed your life is. Letizia Espanoli wrote a book with a small message I wrote and will be bringing me the first copy of her book on September 2-3.

I will treasure her book but more importantly the bond we will be making toward dementia awareness. Dementia has no boundaries and it is up to us to bring the world together.

August 28, 2017

I am so excited I could almost wet myself. I have learned how to do inside out turning of Christmas ornaments. I am gluing up the pieces to turn and told Hazel to get ready to put up the tree.

I am always on the look for new ideas to improve my woodturning. I downloaded some wood clocks off of Pinterest that I just have to make to keep myself occupied when Hazel goes back to work.

I try to find as many safe things for me to do when the weather get to bad to sit on my bench. I figure as long as I can prove I’m capable of staying alone for several hours, there is no need for day care.

August 28, 2017

After 51 years of marriage, Hazel still wants what is left of me. I look around and see my life slipping away but the love that surrounds me is the glue that keeps me together.

We complain so much how terrible our life is, and it may be, but open you heart and feel the love that is being offered. We sometimes don’t want to accept that hug or sign of friendship because we suspect an interior motive.

We think how can someone show me love without wanting more. You reach a point in your life that you understand love is not a physical attraction but a emotional display of support. Stop the hatred in the world and extend your hand.

August 27, 2017

My life could not be more blessed. Letizia Espanoli and Deborah De Angelis, that live in Italy will be visiting the USA September 2-3 and would like to personally give me a copy of the book that Letizia wrote and asked me to write a message for it.

I was so honored that they asked me to do this but I can’t explain the excitement of meeting the authors. I have Alzheimer’s but I’m living my life to the fullest. Thank you God for giving me this life.

August 27, 2017

Today appears to be the start of another beautiful day and guilt washes over me due to the severe weather some are having. My prayers and thoughts are directed to those in Texas and the hardships they are facing.

It makes me determine to live each day as though it possibly could be my last. I am not fixated on my last day but want to ensure none of the precious time I have left is lost.

I want to stay positive and not stray toward the dark side of Alzheimer’s. I want to promote affection to ward off hatred and the idea that we do not have to wait on a crisis to lend a helping hand. We do not have to agree with each other to live in harmony.

August 26, 2017

Knock knock, who’s there, well it’s Laurie Scherrer, her husband Roy and her cousin which I am so embarrassed to admit that I forget his name. They were in the area and we all thought, what a beautiful day to have lunch. Some host I am when I forget a very important person’s name.

Although we spoke many times, we have never met in person but it seemed we knew each other for a long time. Old friends getting together to hug, laugh and enjoy living with dementia. The first thing Laurie said to me was, Harry, you sure are tall. Hazel and I will be on the Dementia Convention Cruise along with Laurie and Roy and are planning on 7 days of pure joy.

August 26, 2017

I was sitting on my bench thinking though my scrapbook of memories and thought of a few of long ago. I only seem to remember the events that make me happy and puts a smile on my face but several jumped into my mind that I haven’t thought about in years.

I used to have a Tennessee Walker horse which I boarded at a neighbor’s farm and rode along the fields on his farm. We also had a Pinto which I believe was the only one that could ride her. Every week a group of us would get together and ride our horse around the country side. Back then there was little traffic so we usually had the road to ourselves.

I was probably 16 and carefree but set the stage for enjoying life. I believe that lifestyle lead me to enjoying my life living with dementia.

August 25, 2017

I had another doctor visit this morning and it was one of the best I had in a while. My doctor me he has no idea how I am doing it, but keep doing it. I believe that a positive attitude and the ability to roll with the punches is the key to living well with dementia.

People that know me know that I have my bad days and I spend my fair amount of time walking in the dark shadows of Alzheimer’s, but they also know that I have a contagious love for life and living to the best of my ability.

I am like Johnny Appleseed when it comes to raising dementia awareness. I plant a seed and admire when it grows. Most of my days are beautiful and I thank my Lord for allowing me to share them with you.

August 24, 2017

Tonight at 6:00 PM, I and three of my friends will be speaking at the Lancaster Health Campus in Lancaster, PA. Each of us are in different stages of our dementia and suffer from different forms of dementia but all have the common goal of giving Hope to nearly diagnosed patients of dementia.

Each of us will tell our stories and answer any questions we are qualified to answer. We have these talks every three months and usually draw 40-50 people. I like to think these talks are mentoring sessions where we try to guide people to the resources they may not know exists.

When you leave our talk, I want to see the fear you wore on your face removed and look into your eyes and see Hope. Our goal is to plant the seed, if they can do it, why can’t I.

August 24, 2017

When does the real story begin, the day you were diagnosed or the day you realize you are strong enough to deal with whatever disease came your way. After your diagnosis of any form of dementia, you go through so many emotions and question why this is happening to you.

Most begin to come to turns with their diagnosis and start their new life after days, months or years of being diagnosed. I believe this is when the real story begins. Your life is going through some drastic changes but you are beginning to adapt to them. If you are lucky, you may meet people just like you and together you learn ways to live with your disease.

You start to see the World of Dementia and the wonders it offers. You may reject it or open your heart to the changes. You may live in the doom and gloom or rejoice for the life you still have.

You will see the world differently and many may not understand, but you are living an enjoyable life with dementia.

August 23, 2017

Always stay humble and kind. Words I wish all mankind would learn and follow. This is especially true when you are caring for someone with dementia. We will mimic your behavior and treat you the same way.

I enjoy life because of the people I hang around with. They also have a joy for life and feed me with their positive thoughts. Living with dementia gets rough at times, but the people around you can help you so much by just being humble and kind.

August 21, 2017

I so badly wanted to view the solar eclipse but was worried because I’m still recovering from eye surgery. I was watching it on TV when it started in the western part of the country and one of the commentators mentioned you could view it safely by sitting under a tree and looking at it shining through the openings of the tree.

I thought, my bench may be the perfect spot and I wasn’t disappointed. We didn’t have a total eclipse but it was still spectacular.

August 21, 2017

When you are experiencing a bad day, living with dementia, you have the emptiest of feelings. It is so hard to put into words but you are isolated from the rest of the world. You feel so alone and lost in the fog that surrounds your mind.

This is the part of the path that you are truly walking alone. There is no denial and no one to blame. No one is around you but you are not walking alone. If you look within yourself, you will see the person you really are.

You may like the person you see or someone that needs to change. You will eventually walk out of the fog with choices to be made. You can ignore the person you saw or see the beauty that is calling you.

August 20, 2017

Just because we can’t say the words for you to understand, don’t leave us in the dark. Learn to communicate with us without saying a word. Remember the days when you were able to sooth your child’s nightmares by just cuddling them and letting them know you loved them.

The principle and technic is the same, communicate with your heart and not your mouth. Don’t leave us in the dark because you can’t find the words.

August 19, 2017

My life is nothing short of a bowl of excitement. When you are a woodworker, the Christmas holidays is just around the corner and I am getting so many wonderful ideas to make as gifts that I better get started.

This is the time of year that my mind forgets it has a terminal disease and I completely put aside all the frustrations of living with dementia and do the things I love to do. I am teaching myself new skills from the ideas my friends give me and adding years to my life.

I push myself harder more than I ever did. I found the secret to living with Alzheimer’s is not feeling sorry for myself and with enough patience I can learn to do almost anything I want. At first, I may fail, but then I will try a different way until I’m satisfied.

August 19, 2017

I would never have believed my life would be the way it is today. I don’t give a hoot that I’ve been living with Alzheimer’s for the last thirteen years because it leads me into the most beautiful world that you would ever want to live.

I get morning greetings from all over the world and personal messages from countries I would love to visit someday. Some messages I must translate but every single one of them sends the message of love and support regardless where they live in this world.

Your world is in a turmoil with hate and mistrust running rampant but not my world. My world is filled with love and joy and everyone is reaching out their hand in friendship. The World of Dementia is filled with understanding and looks beyond my shortcomings and directly into my heart.

I read about the tragedies around the world and it breaks my heart but I also see the love that is beginning to take root and will do away with all the darkness we see. I have Hope and Faith and want to share it with you.

August 18, 2017

I cry in the night, I mourn the friends I have lost and the personal memories that just seemed to fade away. I have every right to be bitter with the cards I was dealt but something is pulling me to the better side of Alzheimer’s

A voice within me is telling me to overcome any obstacle that dementia throws at me because I am strong enough to do it. Ignore the voice that says you are dying and prove to the world that you can live life to its fullest even though you are frustrated and at times, just want to give up.

Be a guiding light to someone you may not even know but gives them the Hope that they may follow in your steps. Most importantly, do this not for the praise but because a higher power asked you to.

August 17, 2017

Here is another idea where I put a candle and candle ring into a jar with a sting of battery powered lights. Add a little snow to start the Christmas juices flowing.

August 16, 2017

I’ve been racking my fragile little mind concerning what I may make as Christmas decorations. I grabbed a little bowl and poured epsom salt into the bottom to look like snow and then spray some snow over a pine cone and some holly. Next I found some battery powered blue LED lights to accent it and was surprised how nice it looked.

August 16, 2017

I don’t write about politics because everyone has their own beliefs and have the rights to believe in them. But I am sickened by the hatred and moral decline in this great country we live in. When I see marchers, carrying Nazi flags walking down our streets slewing their hatred toward Jews, people of color and every gender mentionable, tears flow uncontrollable.

Am I the only one that feels their hate or are we to afraid to stand up to these groups. We have the right to protest but not to the extent that it leads to violence. Can’t you feel the love that is begging us to join it and not let the Nazi flag and what it represents, walk down our streets.

We need a leader to guide us toward peace and extinguish this hatred that is consuming this wonderful nation. To see the light is embracing all races and nationalities and tolerating the difference we have.

August 15, 2017

The world is in such a mess it is hard to believe someone is looking out for us, or is it. I can tell because no matter how dark my day is, something will brighten my day and make me ignore my problems to gaze at it.

I look for those bright spots and not just walk by them. I am constantly watching for a smile so I can pass it along. I am sometimes judged annoying but that starts the cycle of smiles because I know my heart is in the right place and I only want peace and love for everyone living with dementia.

Try my theory that if you look for a smile, you will get it. Have a great day.

August 14, 2017

Remember several days ago, I glued up several pieces of scrap wood that I had laying around my shop? Well the chips started flying and I ended up with this flower vase. You guessed it, OMG I love it, did you make it for me?

August 14, 2017

You pretend it doesn’t matter every time Alzheimer’s robs you of a memory until you close your eyes and think about it. The little losses build up until you finally realize, you have a problem.

You can’t mourn the loss because you can’t remember what it is, but you do realize something is missing. I try not to think about the things I lost because it takes me to the brink of tears.

I miss the things I once did but I’m always trying to learn new things. Living with dementia, your life is constantly changing and you have to adapt to it.

August 13, 2017

I met a blind man that taught himself how to crochet and knit by feel. I honestly think there is no limit to what we can do when we put our hearts into it. Acquiring these new skills takes sweat and determination that few seem to want to do.

So often we become complacent with living with dementia and feel we can’t do anything properly, even in the early stages of this disease. Very few encourage us to do things we never did because they don’t want us to fail.

I am well aware that you proceed to a point in your disease when you can’t cognitive process the learning of new things. But for those that haven’t reached that point, as long as it is safe and someone is available in the case you may need help, there is nothing stopping you but yourself.

Crafts have no gender so men or women can try anything they want.

August 12, 2017

If you did something that you will never be able to do again in your life, would you feel bitter or be thankful that you were able to do it one last time. I feel this way every time we visit Colonial Williamsburg and I think, will this be the last time I will be able to make this trip to the place I love so much.

I would hope that I would cherish the memories knowing I would miss it so much. These are the thoughts you have while living with dementia. We lose so much that you take for granted and the problem is, we know we are beginning to forget these memories.

It may start with forgetting places or names or maybe even what you had for breakfast but surely the memories of yesterday will be forgotten. Not all memories will be taken from us but enough that we forget who we are.

August 11, 2017

When you enter into the late stages of dementia, is there any pain involved? I compare it to falling asleep. Sometimes it takes a long time before you fall asleep and other times it doesn’t take as long.

That may not be a fair comparison, but that is how I view it. You may be suffering from other illnesses that may be causing the pain but normally I think it is a peaceful transition. I believe it is much harder on our care partner, then it is on us.

I view this stage as reaching the pinnacle of this life and no longer able to function in this form and ready to move on to whatever lies ahead. I could be accused of wearing rose colored glasses but something tells me there is more instore for me.

August 10, 2017

I was reading in the Alzheimer’s Reading Room that guilt may be the most annoying of the "seven deadly emotions" of Alzheimer's caregiving. It's right up there with resentment, worry, fear, anger, loneliness, and grief.

I am so focused on the people living with dementia and their concerns, that I sometimes forget about the people caring for us. They stated that guilt is especially bothersome because it tends to be the least rooted in reality. There's often no good reason to feel guilty, but we feel it just the same.

It appears that caregivers share the same emotions that we do. When you come in contact with any form of dementia, You have to remember that it will affect everyone around you.

August 8, 2017

Do you have the ability to walk through life with a skip in your steps? Go with the flow and roll with the punches. Most of us don’t because we get so wrapped up in the day to day activities and miss out on the silly side of life.

I use a cane for balance so obviously you just see a wobble and not a skip unless you look into my eyes. There you will see the skip I am talking about and maybe even the mischief I carry in my life.

I love being alive regardless what Alzheimer’s throws my way. I get down some days, but when I’m not, I have no time to feel sorry for myself. I want more out of my life besides a person living with dementia.

I want to fly to the moon and climb the highest mountain. I want to do the things that someone living with dementia are not supposed to be able to do. I want to convince you that there is life after your diagnosis and put a skip into your step.

August 7, 2017

Before I went on vacation I fill a plastic container with various beads and then covered them with resin that I got from the craft store. They had plenty of time to harden so I thought I would try to turn something out of it. I’m pretty happy with the results.

August 6, 2017

I hear way too often, I can’t stand living with Alzheimer’s anymore and I just smile and say, “suck it up baby, we have a long way to go”. I get days like that to but I can show you the boot prints on my behind where friends gave me an attitude adjustment.

Stop babying us and practice tough love with dignity and respect. Don’t allow us to give up and let nature take its course, because it will. First you must see the light before you can show it to us. You, our care partners, must believe that there is life after our diagnosis then drive that thought into our thick minds.

Help us find a reason to live and make the most of whatever time we have left.

August 6, 2017

Alzheimer’s will not get me down even though it is trying it’s best to do so. I’m walking on the same path that everyone else is walking, but what I am looking at may be different then what they see.

I recharged my body and soul and I’m ready to once again tackle the myths and stigmas that everyone living with dementia faces. I am looking forward to living another year with Alzheimer’s and proving you can do it with dignity and with a smile on your face.

I will lose many close friends to this disease and cry many tears when I hear their stories but I will continue to be the messenger of Hope. I know there is no cure in sight and we will live through some of the most frightening days but I will encourage you to fight your fears and frustrations and see the beauty that still surrounds you.

At first you may not see it but I promise to try to the best of my ability, to help you look in the right direction and see it.

August 5, 2017

I love taking advantage of Alzheimer’s and living my life to the fullest. I am a strong believer in life after your diagnosis and not waiting around to die. I share my life not to brag about how well I am doing but I’m trying to encourage you to not let your disease control your life and consume all your time.

I am so fortunate that my family enters this new world, I am living in, and sees for themselves how much fun we can still have. Don’t put me in the late stages because I am nowhere close to being there even though I was diagnosed 13 years ago with dementia, of the Alzheimer’s type.

I still have my bad days where Alzheimer’s lets me know exactly what my condition is but the fun begins when I prove otherwise.

July 28, 2017

It’s been several days since my eye surgery and my recovery has gone beyond my wildest expectations. A door was opened that let me see the world in a way I haven’t seen in years.

I always believed that even though we are living with dementia, we could make a change to give us a better quality of life. Don’t tell me the old wives tale that you are too old to change, because simply that is hog wash.

I was hesitating with someone fooling with my eyes and debated if it was worth it or not but my love for wanting more made it a very easy decision. I was losing my eyesight but had it given back to me along with a tremendous attitude change.

I have been living with Alzheimer’s for over 13 years and had people trying to convince me that the end was near but a simple procedure with my eyes showed me a world I never want to leave.

July 26, 2017

This morning I had the second eye surgery to remove my cataracts and had new lens transplanted in my eyes. It may take another 24-48 hours before my eyes clear but I now see what Walt Disney saw when he splashed the world with color.

I no longer see the drab world we often see when living with dementia but this rich world in 3D that I now want to reach out and touch. I believe good eyesight allows us to see the world the way it is supposed to be seen and not what we think it looks like.

In order to appreciate the view, I was given, you may need to look other than your surroundings you always saw. I was reintroduced with nature and everything it has to offer. It seems my mind was reset from the doom and gloom of living with dementia into this vibrant world.

My surgery did nothing to cure my Alzheimer’s nor did it alter my future but what it did was give me a new outlook in life and a choice to make. Do I want to return into the shadows of dementia with no Hope or examine this new world that has been opened to me?

Sometimes a simple thing like changing your attitude can take you from one world into another.

July 25, 2017

Time is rushing by without me noticing. I was reminded that next week I will be having a birthday and I will be turning 71 years old. Boy was that a show stopper. I can’t remember being 60 yet alone over 70.

I guess I should start to think about growing up and what I want to be doing when I get old. I just need to figure out what old is, 71 certainly isn’t old, not the way I feel.

July 24, 2017

My excitement and anticipation is building because Wednesday I will be having cataract surgery on my second eye and then on Sunday we will be heading down to my beloved Williamsburg, Virginia.

I can’t describe what it is going to be like to have perfect vision in both eyes. When I had cataract, surgery done on my left eye, I was amazed how clear everything became and the colors were breathtaking to me. I had absolutely no difficulties with the surgery or treatment afterwards and felt like I was rewarded with a new life.

I am so anxious to walk the streets of Historical Williamsburg and see the things I always took for granted. I am like a little kid and need to touch everything. We visited Williamsburg so many times that you would think I know every inch of it, but this time is going to be special.

July 22, 2017

When I was small and growing up, the thing I wanted to do the most lead me to thinking of ways to change the world. I had dreams that I was going to be involved in something wonderful that was going to make a difference.

I studied electronics and computer sciences but never had the desire to invent some magical device that could change the world. I started down the path of having a family and making a living and the thought never left me that I was going to be involved with some wonderful change.

I worked hard all my adult life and became successful in the digital world and was part of the leading edge of computer technology but I wasn’t living my dream. I retired after a meaningful career only to be diagnosed with dementia, of the Alzheimer’s type.

This is when I was forced to re-evaluate my life and my dreams changed to a World without Dementia. I wasn’t interested in finding a cure but rather changing the views on how we live with dementia. I wanted to lead by example that there was life after your diagnosis and destroy the stigmas and myths of living with dementia.

It’s over thirteen years since my medical results of dementia and I feel like I am living my dream of changing the worlds view on how we live with any form of dementia despite the stigmas and myths that are still very much alive today. I am part of the movement that is giving Hope and encouraging people to live their life to the fullest and not in doom and gloom.

It took my diagnosis of Alzheimer’s to make me a believer in my dreams and the passion I got to follow them. It is never too late to follow your dreams.

July 21, 2017

What is a bucket list and why in the world would I ever want one? Simply put, it is a to-do list of things I would like to do before I die. It can be as large or small as you want and be changed anytime you want.

My bucket list is a mile long because I like to think big. Since I no longer drive, I took driving along Route 66 off the list but that doesn’t mean I can’t be riding shotgun with my head hanging out the window singing my heart out.

It is fun to make a bucket list because latter you look at it and think, why in the world would I ever want to do that. What’s on your bucket list?

July 19, 2017

Do you have a meltdown avoidance plan that you can put into action to avoid those sudden outbursts of anger that so too often happens? I recently made up one with the advice of my friends.

I now try to steer away from conversations that gets under my goat and leads toward that meltdown. I used to enjoy a good argument but now it usually takes me down the path of agitation and frustrations.

Walk away is now my motto because there is no winner in an argument. Do whatever you can to avoid confrontations that effect your health. Don’t allow yourself to be lead down the path to a meltdown, come up with a meltdown avoidance plan and stick to it.

July 18, 2017

We cannot have fond memories unless you help us make them. I often get memories from Facebook of one or maybe two years ago that seems to me like they picked a good one. They may pick a picture or a post and they are my memories that someone helped me make.

These pictures would never have been taken unless someone like you makes it happen. Spend time with your loved one living with dementia and take a lot of pictures then show the pictures to them and help them bring back the memory.

July 17, 2017

Sometimes living with any form of dementia, we forget that it is ok to laugh. I don’t think that we forget how to laugh but maybe we think it makes others uncomfortable when we do. We are outside this mold that is projected of us so we feel we must fall into the norm.

Not me, I have learnt that humor plays a huge part in how you view life. I am so fortunate that my family doesn’t get embarrassed with my silliness but not only encourages me but joins me.

Proof is the many pictures I like to post of Patty and me when we all go on vacation. There are times that Hazel and Keith may roll their eyes, but not Patty, I think she enjoys making a fool out of herself as much as I do.

July 16, 2017

Living with dementia in the early or even in the moderate stage is so different then living in the end stages. In the early stages, most would never be able to tell that you have the start of a memory impairment. In the moderate stage, you may still be driving and working depending on your cognitive abilities.

Either stage you can enjoy life and by adapting to the changes, you may be able to do the things you always loved to do. These are the stages that you need to be given Hope and encouraged to live your life to the fullest. You still have dreams and may need a little push to follow them.

This is when you are most vulnerable to the changes in your life. You know you are declining and start to look to far into the future. You forget about the here and now and begin to worry what will happen next.

This is when you need the words of Hope to echo in your head and be reminded that you are not seeing the end in the road but the beginning of a beautiful new life.

July 15, 2017

It is so sad when you tell your story in the hopes that it when help someone else, and a person responds in a way that they are trying to make you out as a liar. It is hard to explain how this disease is slowly eroding your mind especially when you are still capable to do it.

There are days when you write with tears in your eyes knowing that you need to tell your story knowing there is going to be someone reading your posts and identifies to what you are saying and maybe just maybe it makes them feel a little better knowing they are not alone.

When someone questions your illness, I wonder why that would bother them and can only think that they want you to hurt the way they think I should. Our society is so sick that they feel it is ok to cruelly attack a person living with dementia. When did we lose tolerance and the sense of kindness?

It is sickening when a person living with dementia cannot tell their story without being questioning about their integrity. The storyteller has a brain impairment and relies in many grammar tools to help them tell their story.

If I was being treated with cancer and told about my experiences with chemo sessions, would someone question me whether I needed chemo or not. Would they slice through my life and tell me that I don’t have cancer? I would have to say, the way our society is declining, there would be someone brazen enough to do so. I am so sick of living with Alzheimer’s and having a need to tell you about how I am losing my life and having nightmares of people attacking me. I am tired of wearing this happy mask.

July 14, 2017

Does a time ever come in your life where you just put your dreams away and let your life take you where it wants. If you are living with dementia, I believe this happens quite often. There is a tendency to give up on living because you have this terrible disease.

I am here to tell you that you must never give up on your dreams. You may never reach them but you owe it to yourself to try. We need goals in life and mountains to climb if we want to be happy living with dementia.

Of course your dreams must be realistic but don’t make them that small that they are easy to reach. They must be large enough to make you work for them and climb that mountain.

July 13, 2017

I received my Canon VIXIA HF R800 video camera that I bought specially to take along on our Dementia Cruise this November and had to try it out so I would know how to use it. I read the quick guide on how to use the camera with little to no success but thought, how hard could it be.

The first I realized was that a memory card did not come with the camera and the camera is worthless without it. If I would have known that, I would have ordered one when I bought the camera but I thought the camera came complete ready to use.

Hazel took me to the store and we purchased a memory card recommended for the camera. Without knowing what I was doing, I rushed outside to shoot my first video with my new camera. I viewed my video on the screen on the camera and thought, this is great.

Now all I had to do was to download the video from the camera to my computer. No problem, I already have a camera that by hooking it up to my computer, I can download my pictures right to my computer.

The video camera came with a USB cable and after reading the stupid instructions for a zillion times, I thought to myself, this will be a piece of cake. I hooked up the camera just barely holding back my excitement, and found out that Windows 10 didn’t recognize my camera. This worthless piece of junk they call a user guide, that came with the camera, didn’t say anything about problems if Windows 10 doesn’t recognize it after you properly hook it up to your computer and turn it on.

Being no dummy, I went to the Canon website for help. There I found out that you need to download some software in order to download your videos. By now I’m beginning to lose my patience but I followed their directions and installed this software on my computer. My guess is you know what followed, a message appeared that told me that my computer didn’t recognize my camera. I opened up my window, stuck my head out and scream.

I knew the videos were on the camera’s SD memory card but couldn’t get them off. I also knew if my computer had a SD memory card reader, I could simply pull the memory card out of the camera and download them to my computer. Off to Walmart to buy a memory card reader for $20.

I came home and plug the memory card reader into a USB port on my computer and was able to download my video with absolutely no problems. Now what did I learn from this fiasco? First was never read the user manuals because they are worthless and will only confuse you but most of all, ask for help.

July 13, 2017

I can’t believe the difference having cataract surgery done on one eye made in the quality of my life. Everything is sharp and clear and I know by now you are tired of hearing about it, but I honestly feel like a new person. I still need the other eye done in another week or so but I no longer have a need to wear glasses.

After wearing glasses since I turned 16, if feels so strange not having to put them on. My doctor said I may need a pair of reading glasses but I have no problems reading at all. I had so much trouble reading from the monitor on my computer that I stopped reading some of the posts, but no longer.

After living with the depressions of dementia, a 15-minute surgery gave me a new outlook on life. The brightness and colors I now see confirmed there is still so much beauty around me that I never saw. I am anxious to see if I can avoid walking in the shadows since I made this attitude change.

July 12, 2017

One eye done and one to go. I am walking in another world I didn't know existed. I just had the surgery done this morning and the colors I now see is unbelievable. I tried on my glasses that Ive been wearing but quickly removed them because my vision became blurry.

I can’t believe how bright and sharp everything looks and I’m told once my eye heals, it will only get better. Now I wait two weeks and have the other eye done and can’t wait to see what else is going to change in my life.

July 11, 2017

Tomorrow is the big day I get my cataracts from one eye removed and a week or so later I get the other eye done. I am so excited with the possibility of having my eyesight back without the dark shadows.

I realize it is minor eye surgery but my expectations of the results are soaring. I will be able to sit on my bench and view the vivid colors with more clarity. I feel like I’m getting a part of my life back and that is the reason I am so excited.

July 10, 2017

This a public service message, in a couple weeks I will be vacationing in my Williamsburg fantasy world and return as a crazy Christmas fanatic. I will be spending hours in the Christmas Mouse just looking and humming Christmas songs but more importantly, I will be having my yearly talk with Santa Clause at the Yankee Candle complex.

Upon returning I will start making my Christmas gifts and driving people crazy from my Christmas spirit. As you know by now, yelling at me because it is not yet Thanksgiving and it is way too early to be thinking about Christmas doesn’t faze me. Hazel no longer complains when I play my Christmas songs because she knows she lost that battle.

I don’t have to show my Alzheimer’s card because everyone realizes that dementia doesn’t cause this Holiday craziness in me. It’s mainly due to Santa Clause saying, hello Harry, how are you doing when I walk into his workshop in Yankee Candle. I added additional admins on Forget Me Not to help curb my enthusiasm, but we all that’s not going to happen.

July 10, 2017

Several months ago, I got this hour glass with purple sand and thought it would make a nice project. Sometimes simpler is the way to go and I think this stand I made makes for a nice dementia hour glass.

July 9, 2017

I believe once you get a diagnosis of any terminal disease, you start to see the real meaning of life. You may have been a scrapper all your life and fought for many things, but nothing compares like fighting for your life.

The petty things in your life doesn’t seem as important to you anymore and you strive to keep a peaceful serene life. You begin to see the beauty around you that you were too busy to see before.

I’m beginning to wonder if this is the Golden Ages of your life that many talk about.

July 8, 2017

I often get a message from a friend with a “time to reflect” theme to it. Maybe they send me a link to a song from the 50’s/60’s that triggers a memory long forgotten. I love to be reminded of the glories life I lived and the memories that could easily have been forgotten.

When I reflect on my life it was hard but nothing like it is today. I had dreams of things I wanted to accomplish and mentally made plans on how I would get them done,

I’m sure back then my life wasn’t as exciting as I believe it was but life was so simple then. I never want to forget my “roots” and where I came from. I want to remember the ice box and the horse drawn ice wagon and hitching a ride on the milk wagon down to the corner of the street.

When I think about it, I always lived a blessed life with so many hardships building my character.

July 7, 2017

Studies show that as you progress with dementia, your walking slows down. I’ve taking notice of this many times when Hazel and I are walking and she becomes several steps ahead of me and turns and asks, where are you.

I believe it is easy for our care partner to walk away from us without realizing it. They turn around and can’t find us and think we walked away when in fact they walked away from us.

Be aware of these little changes when you are living with dementia.

July 4, 2017

What do you do if it is the 4th of July, living with dementia and too muggy to go outside and sit on your bench. Well you can do what I did by going into your shop and look around for a hunk of sassafras wood that is just begging to be turned into something beautiful.

LYou mount in on your lathe, with a hot cup of coffee sitting beside your bench and reach over and crank up some 60’s music on the radio. You make sure your tools are sharp and start humming whatever is playing because you know all the oldies but goodies that is playing.

The hours fly by and you think. “hey looky what I made”. I’m sure Hazel will be checking on me shortly and I need to come up with a name for the thing I just made. Sure as my prediction, the door opens and I sqill. Hazel look, I made a vase.

With her eye lids fluttering and a hint of moisture coming out of those big blue eyes, you guessed it, she says, I love it, is it for me. What can I say, just my usual response, yes honey, I made it just for you?

July 2, 2017

I often speak about how lonely it can get living with dementia even though we are surrounded with the most loving caring of people. They give us the best possible care we could wish for but they do not connect with our emotional needs.

We talk about the safe things but never what is scaring me. You may ask me if I feel lonely and guaranteed I will say no because I know you are doing your best. Do we ever talk about end of life decisions or if I think there is an afterlife once we pass?

These are the gruesome topics we rather would not talk about but when we have that distant stare on our face, we are thinking about the things that are too horrible to talk about. I believe caring and connecting goes hand in hand.

July 1, 2017

It is so easy to give up living with any form of dementia. You read a book and jump to the conclusion that your life will be exactly how the experts tell you until you sit down with someone that has been living beyond the average life expectancy and they tell you their story.

I won’t try to minimize the hardships and frustrations, and I could tell all about the things I lost, but I won’t. I want to give you Hope and push you to live the best life you can with the remaining time you have

I want to live my life by example and prove that although you are living with a terminal disease, you can be happy and with some modifications, do the things you always loved to do.

July 1, 2017

Today I finished my Zipper Vase and heard someone scream, “I love it, is it for me” as she grabbed it out of my hands holding it to her chest. As you know I love woodworking and made a vow that Alzheimer’s would never rob my love with working with wood away from me.

This vase is made from gingko and I used a Danish Oil finish on it. We can live a happy life living with dementia if continue to do the things we love.

June 28, 2017

Have you ever sat in the quiet and tried to figure out what was important to you and why? You reach a point in your life where material things no longer matter to you and you think, is there more to life than this. You worked hard all your life only to get more, but the day will come when you realize, there is nothing more you want. You stop thinking about yourself and wonder what you could be doing to help others.

Am I gaining the wisdom that often comes from getting older and starting to see what the future will really hold? No one will remember the wealth you worked for but will remember the sacrifices you made to help others. I often sit on bench and wonder, what is important to me.

June 27, 2017

Today I visited my eye surgeon to discuss cataract surgery. I know the concerns with any surgery if you are living with dementia, but the benefits I will receive by having them removed, outweighs any risk I may take. When sitting on my bench, I want to watch the birds and not just their shadows fluttering around. I dream of seeing the things I once took for granted but for the last couple years, everything has been cloudy.

We scheduled the surgery in two weeks. He will remove the cataract in one eye, then a week or so later, do the other eye. I told him that we will be visiting my beloved Williamsburg the first week of August and don’t want to miss seeing anything.

LPatty and Keith drives us down every year and this year when I’m riding shotgun up front with Keith driving, he will be so relaxing driving knowing I will be able to see and give him directions. I won’t have to sing, 100 bottles of beer on the wall to keep entertain.

June 27, 2017

Here is the latest. “I love it, did you make it for me”, woodturning project I completed today. As fast as I make something, Hazel falls in love with it and when she bats her puppy blue eyes at me I just tell her, yes my dear, I made it just for you.

June 25, 2017

When I look over the years, since I have been living with Alzheimer’s, at all the dementia related projects I had the privilege to work on, it bogglers my mind. I understand why some would question whether I have Alzheimer’s or not.

It not only takes courage but a willingness to give up your personal life when you speak out on living with dementia. It’s a passion that will give you life and the reason to continue no matter the hardships you face.

The time will come when I can no longer Stand Up and Speak Out but like my friend Richard Taylor taught me, I will always have the strength to encourage others to continue our fight.

June 24, 2017

I talk to many people that never been tested for any cognitive difficulties although they see signs of problems. This is mainly due to friends or family members telling them there is nothing wrong with them, it’s all in your head.

They think they are protecting their loved one from a diagnosis of dementia or maybe themselves from hearing that dreaded result. They are only preventing their loved ones from getting the proper care and learning how to live with this disease.

There are some that never want to know and that is their choice but there are more that want to know, what is wrong with me./

June 23, 2017

Here is my latest woodturning project I made out of mahogany with a Danish oil finish. I must admit that I wasn’t planning on turning this but believe it turned out right.

June 20, 2017

Yesterday we had terrible storms roll through the area with torrential rainfalls and winds that uprooted several trees in the area. It was horrible to watch but today is one of the most pleasant days you ever want to have. The weather reminds me so much what it is like living with dementia.

We can have a really bad day and the next day you could never tell we had a bad day. Nature has a way to calm the storms and I believe we do to unless someone is fanning the flames.

I find that when I have a bad day, I need time to myself so whoever is healing me is not interrupted. Just like the weather, I try to prepared for the storms and ride them out, knowing the sun will shine again.

June 18, 2017

I have a problem, well not just one but only one I want to talk about. I sat down in my chair and turned on the radio that I have sitting beside me, and the first song they played was YMCA from the 70’s. I can’t get that darn song out of my head.

I go into the bathroom singing YMCA and when I come back out, yep I’m still singing it. It’s funny how the needle gets stuck on a thought and won’t let go.

This happens to me all the time. I get an idea in my head and can’t let it go. If you see me walking down the street singing YMCA, just ignore me and walk away. It is a catchy tone.

June 17, 2017

Last night at our Memory Café we all brought a covered dish and had a picnic in the pavilion at the church where we meet. Several new to the group couples joined us and we had the best times of our lives.

There were times I laughed so hard that I forgot how depressed I have been and felt like the old Harry. Memory Cafes are so important to us living with dementia because we are amongst friends that accept us for what we are.

We know we will not be judged and we can be ourselves. Our Memory Cafes are designed to be a social gathering for folks living with dementia. We share our stories but most of all the atmosphere of not being alone is always present.

I encourage everyone to start a Memory Café and see for yourself why they are so special. There is so many different ideas what a Memory Cafe should be like but ours is like walking into a magical room and leaving all your problems outside.

June 17, 2017

I was encouraged, pushed and prodded to not only update my blog but to continue to document My Thoughts on Dementia. My blog is a journal of my life in the past several years living with dementia and grew to be 517 pages long.

I have no intentions or desires to write a book but it is important to me to leave behind a firsthand account what life has been like for me, over the course of living with Alzheimer’s.

I always had the belief it is harder to live with the people around me then living with the disease and my blog documents why I think that. I encourage everyone to keep a journal and just write a short description on how you feel at the moment each day.

I believe these journals we keep will become the learning tools in the future. Most people look at us and form some type of conclusion concerning our life but after we are gone and they read out journals that cover the years we have lived with our disease, I am sure their response will be, I never knew.

June 16, 2017

A voice within my head asked me, “are you happy, you look so sad”. It made me wonder because I do very little writing and even my woodworking seems to have taken a back seat. This past month I have changed and not due to my cognitive abilities.

I do not feel depressed but the spark in my life has defiantly been taken away. I lost my passion and I’m now walking aimlessly down this path. Everyday I’m just putting one foot in front of the other and walking.

I am lost and have no idea how to return. I am content sitting in my paradise and letting the world go by. When I pray, I only hear, be patience. I do know that Alzheimer’s did not defeat me.

June 15, 2017

I love the hot weather but it is also nice having these cooler days. Sitting on my bench just letting my mind escape into the world where people living with dementia go. It is a world free of dementia and you are surrounded with peace.

Most people may think I am just sitting there, staring into a void, but in my case, that is not so. My thoughts are clear, but of another time. Maybe I am reminiscing of better times or maybe where my path is leading me. Either case, I am content and at peace with myself.

June 12, 2017

How do you explain your belief that the dementia path you are walking is leading toward a better life and not death? I believe a positive attitude and a strong religious belief will give you that perception.

I watched some of the Children’s Miracle Network fund raiser and watched so many children laughing and appearing to enjoy their life. Not once did I think, since they were laughing were they faking their illness for attention nor did I see or hear another parent criticize another child because they appear to be doing much better than their own.

This is not the case if you are living with dementia. You must fit the mold that everyone knows or you can’t possibly be living with dementia. People want to understand the dark side of dementia, but when you explain it to them, they attack you because they think if you can explain your thoughts and feelings, you must be making them up.

We have made progress in raising dementia awareness but have so far to go before people realize the there is life after your diagnosis. The war we are fighting is not dementia but making people accept us.

June 11, 2017

When you climb a mountain, you can clearly see the next one you want to try. Living with dementia it is so important to be looking for a mountain or hill to climb and then attempt to climb it.

It is so easy to fall into a life where you let nature takes its course, but for me, I need to reach for more. I’m criticized so often for doing so well after living with Alzheimer’s for over thirteen years, but maybe it is because I took control and believe in myself.

The only person that can tell me I can’t do something. is myself. Now when I talk about climbing a mountain, it is not a physical thing but more a mental thing. We tend to convince ourselves that we are no longer able to do something without even trying. When we surprise ourselves and find that we climbed that mountain, you can’t express the feeling of accomplishment.

June 8, 2017

What a wonderful day it was today. The temperature was in the mid 70’s and a bright sunny day to finish painting the deck railing. One step closer to having the perfect place to go and escape the world. Tomorrow promises to be a repeat of today and I believe I will be able to finish putting a non-skid surface on the deck floor.

One more day then I can officially put the deck furniture out and put my DO NOT DISTURB sign up. I plan on spending many hours watching the hummingbirds drink from the feeders and just get away from the horrors of living with dementia.

My bench will be getting jealous so I will need to go downstairs and sit out under my tree some times. We spent a lot of time creating my little spot of heaven, but it will be worth it.

June 6, 2017

My project for today besides mowing the yard, was to weed and mulch one of the flower beds. I have tulips planted in this bed and early spring, that side of the house is an array of color. They were calling for rain, and it sure looked like it, but it turned out to be a beautiful day. It would have been a perfect day to continue my deck painting but working in the yard won.

June 5, 2017

This morning I went out to my shop and dusted the cobwebs off my lathe. I glued up two pieces of mahogany about a week ago and wanted to see what they would turn into. I need to climb out of this hole I am in and since it’s raining, what a better way to shake the blues.

Round and round this hunk of wood spun and wood shavings started to fly. I forgot all my frustrations and concentrated only on the piece of wood, spinning in front of me. When I finished, I looked at it and started to call it my Button Bowl.

June 4, 2017

Are night terrors and nightmares the same thing or are they different. It is my belief they are somewhat different. I put ghost, monsters and things that generally scare you in the category of nightmares.

I think of night terrors being real life horrors that awaken you in a cold sweat. Reliving the horrors of any form of dementia like the threat of death every minute or the hopelessness that goes with the disease, I call night terrors.

Last night was a night of terrors. The walls of Alzheimer’s crashed down on me and I had a visual view of what I think my future will be like. I am hoping I finally hit bottom and I can start to climb back up. This past month has been extremely hard on me and these are the times I wish it was over.

Once I hit bottom, survival will kick in once again I will begin to fight. Until then, I just redraw into myself and try to protect myself.

May 30, 2017

I work so hard to try to prevent Alzheimer’s from controlling my life. I regularly see my doctors and take medications to control the mood swings that are occurring. I live under a fine microscope that if any changes occur, they are reported to my doctor.

But what of the people that are caring for us. They allow this disease to turn them into bitter resentful people that lash out at anybody they feel is living a better life. I am required to visit my doctor every three months but when was the last time a caregiver visited their doctor for a simple wellness check.

I have blood work done every three months and during my doctor visits we talk about the changes and difficulties I am facing. I am living with dementia and being well taken care of but is the person caring for me taking care of themselves or are they too busy?

May 29, 2017

Today Robert Bowles called to check up on me and asked what I was up to. I told him I was sitting on my deck looking at how much the flowers grew because it rained and it was too wet to do any painting. After telling him what I was looking at, he asked me to take some picture so he could see what my sanctuary was going to look like.

One of my favorite is my “tea pot” which is a planter that I planted five different varieties of tea in. When I am done working on the deck, I will move it beside my chair and let the aroma and fragrances relax me.

Another is my herb garden and the planter boxes that sit on top of the railing. They are calling for rain the next couple days but sooner or later the sun will shine and I will be able to complete my little spot of heaven.









May 27, 2017

When you are living with dementia, safety in your home becomes one of the most important things you always must keep in mind. My plans and hopes are to live out my days at home and create sanctuary places that I can go and stay safe.

I am creating such a place with my upper deck outside our dining room. The first thing we did was remove the steps that went to the back yard. These steps only provided a shortcut to the yard below, but also posed the threat of some nasty falls. We also removed the outdoor carpet and I installed decking to prevent me from tripping.

Today we got nonskid paint designed for decking which I hope to do when I paint the railings this week. It gets better, I have a raised table which I made into my herb garden which adds to the sensory effects I am looking for. On the top of the railing I have special flower containers that straddle the railing and are filled with colorful flowers.

I also placed several planters around the deck. Once I’m done with the painting, I’ll move my wicker furniture that is stored in my shed to complete another safe place for me to go and escape the world.

May 27, 2017

My garden is near to perfect for me. I had to put on a light jacket and there was a threat of rain, but I was able to sit on my bench for several hours just looking at the flowers I planted several weeks ago. It is simply amazing how everything has grown, even with the weather we have been having. I can only image how nice it will be once the sun returns and it gets warmer.

I was thrilled to see several butterflies fluttering around my butterfly garden and the song birds returning to my feeders. The squirrels are not used to me sitting on my bench so they stay away if I’m out. I know that will change and I will sit there and watch them shamelessly eating out of my bird feeders.

It’s been a great day and one I hope to see more often in the future.

May 27, 2017

Picking up the pieces is getting harder to do. My rose-colored glasses were torn from my face and I now see the world as it is. I don’t know what I would do if I didn’t have this wonderful support system that surrounds me.

Most people don’t realize how cruel we got with each other and lost total regard toward decency and integrity. I can’t blame Alzheimer’s in the sudden change in me and just wanting to give up.

It’s the environment we live in and the mistrust we feel for each other. You can be part of this society or try to isolate yourself it. For me, I don’t want any part of it. I have too much love and compassion to be a member in todays society.

May 25, 2017

Today at my doctor appointment he told me there is nothing else he can do for me, we just need to ride out the storm. He was not being mean or giving up on me, he was only fulfilling a promise he made to me 13 years ago about being honest with me and never hiding anything from me.

He knows he will never cure me but will ensure that he will do his best to help me function to the best I can be. I love this man not only as my doctor but a trusted friend. He understands me and the path I am walking. Reality is hard to face but prepares you for the years ahead. There is no turning back and like Hazel constantly tells me, we will do this together.

May 23, 2017

I don’t care if my short-term memory is not working, I have the happy days of long ago that satisfies me. I can’t remember what I had for breakfast yesterday but I can vividly remember walking in the halls of my old High School.

I remember my classmates and where they sat in class and the fun we had during summer vacation. I can recall a timeline of my life up to a certain point then my life becomes fuzzy. Maybe my Alzheimer’s is protecting me from the horrors I am living and letting me forget them.

May 22, 2017

One of the myths that drives me crazy concerning Alzheimer’s disease is the life expectancy of someone that was diagnosed with it. Most people think that if you were diagnosed at 55 or 85, your life expectancy is 4-8 years after diagnosis. When they hear, I was diagnosed over thirteen years and function relatively well, they think I am special or very lucky.

They never think that many live 20 years or more when diagnosed in their 50’s. As you age, the risk factors from dying of complications increases dramatically. You develop other medical ailments like high blood pressure, which could lead to strokes, diabetes and so many other that may shorten your life.

So many factors need to be considered like age, gender, physical condition and any other medical conditions before you can group all of us in the 4-8 year life expectancy group. I am not special and certainly not lucky, I was diagnosed early and work very hard to beat the odds.

May 20, 2017

When I look back over the last 13 years living with Alzheimer’s, I’ve lost so much that I once had. Precious memories are gone, and having no sense of time or not knowing what day, month or year is all part of my life now. I no longer can follow the simplest of instructions and get lost walking around the block.

All these hardships were caused by dementia and the degeneration of my brain caused by Alzheimer’s. These don’t compare to the hardships of proving to the world that I have cognitive impairments. The general public doesn’t realize that my medical records are protected by Hippa Laws and more important, none of their business.

We are attacked and emotionally abused by some simply because we don’t look or act like someone in their late stages. When we talk about our thoughts on dementia, they go into a feeding frenzy and personally attack us. They continue until they have us standing on the edge of the cliff, then they give us one last push to make sure we go away.

These abusers come from all walks of life including some that claim to have medical backgrounds. If we do not fit into the mold they know, we must be fakes or misdiagnosed. In my case almost all of my abusers are women that are caring for a family member and feel it is ok to attack me because they feel I am not like the person they are caring for who may be in their late stages.

Elder abuse is becoming a major issue and we need to stop it.

May 18, 2017

The further you walk down the path of dementia, the less important things around you become. You begin to spend more time within your thoughts and less time on what is going on around you. I am perfectly happy to sit on my chair thinking than doing busy work.

There is a misconception that we need to be kept busy all the time. It is important that we exercise not only our body but also our brain but we need to escape the busy world around us and try to understand where we are going. When I’m sitting on my bench, watching the birds, come join me but don’t try to have me do something I would rather not. Have trust in me, I know what I am doing.

May 17, 2017

What a skippy do dah day it was today. It hit 93 degrees and I got to work on my deck today. I’m putting a new deck floor on and today was the perfect day to get most of it done. After that I’ll paint the railing, put my wicker furniture out to finish another perfect spot to relax.

I took a break and was watching a humming bird telling several large black birds that they don’t belong in its territory. This tiny bird flew around the bigger birds and chased them away. Now if I could only train it to chase the squirrels away.

May 11, 2017

Today we took another train trip to Harrisburg today. I need an official birth certificate for my passport even though I had a passport and traveled to Germany, it ran out and once again need proof I was born to get it renewed. We need to go back next Tuesday to pick it up and since the place we pick it up is only two blocks from the train station, we are already planning another day trip.

Riding the train is so much fun and a lot easier then driving there. No fighting the traffic nor looking for a parking spot. It cost $19 total for Hazel and I to ride the train roundtrip which is cheaper than a tankful of gas.

Since I no longer drive, we are finding out that by taking advantage of seniors discounts, it is easier and cheaper to use public transportation.

May 8, 2017

Today we went to the Capital, in Harrisburg, for the 2017 Alzheimer’s Association Pennsylvania Advocacy Day for the 2017 Alzheimer’s Association Pennsylvania Advocacy Day.

I was able to meet with 3 or 4 Representatives in the morning and could tell my story and raise dementia concerns with them. After lunch, we sat in on two meetings that covered a talk with the Secretary of Aging and several heads of another Department considering the merger of these department.

We had a very productive question and answer session with them and then a session on elder abuse, which is one of my favorite topics I love to talk about with any official. I mentioned about various forms of dementia abuse including power of attorney abuse and dementia cyber bullying.

May 7, 2017

If you were sitting with someone living with some form of dementia and they told you that they saw or spoke to a relative that was dead for years, would you scream at them and call them a liar? Would you insist that they prove to you that they were talking to this person?

Do you realize that often people living with dementia get disconnected with reality and do and say things that just doesn’t make sense? Most of the time they seem perfectly normal to you, and then they do something or say something that makes you angry.

The way you react to these situations defines whether you understand the world of dementia or not. Have you cared for someone and expect everyone else living with dementia to be just like them? Is it hard for you to understand that all of us living with dementia is different?

Some caregivers never understand dementia until after their loved one passes because they stopped reacting and started to listen. Don’t react to a situation, try to understand it before you say anything. You may be able to see it through a different perspective.

May 6, 2017

Stigmas and myths concerning dementia are so hard to kill. The one that is so amazing is so many still believe that you start living your disease the day you were diagnosed when in fact you may have been living with the symptoms of dementia 10 years prior to your diagnosis.

They still believe 6-8 years is maximum before you enter the late stages and no one lives a productive life after those 6-8 years. I believe there are still people that believe you can get pregnant if you swallow a watermelon seed.

I once believed that education would stem some of these myths but I now believe that a cultural change is necessary. There is plenty of good information available on any form of dementia but unfortunately many want to get their information on social media from those that scream the loudest.

May 6, 2017

I was a victim of dementia cyber bullying. I allowed these dementia bullies to drive me from a Facebook group I founded called Forget Me Not, and stopped me from writing My Thoughts on Dementia with their vicious feeding frenzies. They see themselves as activists and viciously attacked me verbally simply because they did not agree with my thoughts.

They steer you to the edge of a cliff, then push you off. They are slowly quieting people living with dementia so they can tell you how they think we feel. They want to be the dementia experts without paying their dues of living a single day with dementia.

They are nothing but dementia cyber bullies and need to be exposed. Starting today, I plan on continuing writing and posting My Thoughts on Dementia and creating my “Bully Board” where I will post the names of the dementia cyber bullies that have a need to feed off of me. We need to stop these self-righteous people that get their kicks out of attacking people living with dementia simply because they are speaking out.

May 5, 2017

Let me tell you what torture is like when you are living with dementia. The world is against you it seems. Yesterday Hazel took me to two different garden nurseries and we ended up with a car load of plants. Beautiful plants with lots of colors that puts the finishing touch to my flower beds.

I day dreamed the whole way home thinking how nice it is going to be sitting on my bench gazing at my garden. We unloaded the car and placed all the plants so today I would know exactly where to plant them.

Last night I slept like a baby admiring my garden, sitting on my bench and thanking the Lord for being so blessed. I awoke this morning full of vim and vinegar ready to do some serious planting only to have Hazel tell me it is raining.

The air went out of my balloon when I checked the weather and saw it is calling for rain every day for the next week. There is always a bright side and I’m looking for it. Then I remembered that the lumber yard is delivering the lumber to rebuild my upper deck floor today.

For the next week, I can look out the windows through the rain, at my garden that needs planted and the stack of deck flooring laying in my driveway. I have Alzheimer’s and this is my life.

May 4, 2017

To chilly to play outdoors so I decided to turn another Treasure Box for Hazel out of the scrape mahogany that was given to me. The picture doesn’t come close to how beautiful that piece of wood I glued up and turned, ended up.

Today she took me not to one but two different garden nurseries after I told her that I had several empty spots in my garden. We ended up with another car load of plants, and I thought I better make her something to add to her collection.

May 3, 2017

Despite it being cold, windy and threating to rain all day, I was still able to spend some time outdoors working in the yard. I am so worried, after so many days in the 80’s that for the next week, temperatures may dip into the 30’s.

I am going to be so upset if we get a frost and kills my plants being so close to that magical safety date of Mother’s Day.

May 1, 2017

Another cloudy day but my plants are happy and thriving. They find enough sunshine between the clouds to nourish themselves and grow. Why can’t we be more like that living with dementia? We have cloudy days but seldom look for the sunshine that is shining through.

Plants don’t worry about politics or paying the bills, their main concern is staying alive and thriving. Unfortunately, we do worry about those things and not enough time on ourselves. I seem to be spending more time comparing my life with nature and finding ways adapt to the many changes that are occurring with me.

I watch the trees bending in the wind and not breaking. No matter how many times I cut the grass, it grows back and is just as beautiful. Nature is teaching us lessons but we are too busy to learn.

April 30, 2017

I’m running around in circles trying to figure out where to plant which flowers. Yesterday we got a car load of plants and I know I am gambling on putting them outside but I’m like a little kid with a bagful of goodies.

I never got this excited before but it seems I’m always in a hurry to get something done. This year I am doing more planter type plantings with the hope of outsmarting the squirrels and rabbets.

Every year we battle and every year they win, but each year I’m making them work harder. They never get mad when I chase them with my shovel because when I sit on my bench, they come back and stare at me telling me the bird feeders are empty.

Life is good living with dementia and playing with the critters. No one ever questions what I am doing.

April 28, 2017

I’ve spent the day getting dirt under my fingernails working outside today. I am so spoiled with the weather being so nice the past couple of days that I am so tempted to say, heck with waiting until Mother’s Day, I’m planting flowers.

This is the time of year to take up residence on my bench while it isn’t so hot that the air condition beckons. Spending time outdoors, I found myself and reestablished my purpose in life. Spending time with myself and God will do that, I had a good chat and found my inner peace that I lost several weeks ago.

I feel like a new born baby, cradled in the arms of my Lord and ready to fight the stigmas and myths of living with dementia. I swear that old bench is magical and can put a spell over me and make me realize what is important in my life.

I made a promise to myself to distance myself from the people that agitate me and always remember that my thoughts on dementia are mine and not let others try to change them. I owe no one an apology for my thoughts nor do I need to defend myself for thinking them.

I will stop allowing people to push me into a dementia meltdown. I now realize their only purpose is to try and hurt me the way they are hurting and push me into an early death. I will not fight with them but block them from my social media life and let them fester in their own miserable life.

I recommend everyone find their own magical bench and have a talk with themselves. You may find out that the person you are talking to is not very likable and changes are needed. Don’t stop there but listen to those magical little voices that are trying to push you in the right direction.

April 27, 2017

My herb garden seems to be happy playing in the sun. I’m in the process of rebuilding my deck so I’ll need to work around my herbs. I planted several varieties of tea in a planter because they get so invasive and will take over the garden. I will move the planter next to my chair, once the floor is done, so I can swipe the back of my hand over the tea and enjoy the fragrance.

April 27, 2017

How can you “fool” you senses and pretend you are somewhere else?

I’ve learnt a technique called visualization and got very good at it. I use this method when I’m having a bad day and want to return to the light. If it is one of those days when I am ready to step off the cliff, I will sit in my recliner with my feet propped up.

I put on a set of headphones because the sound is more clearer and removes any outside noise I might hear. Next I play soft relaxing music though the headphone and start to relax my mind of any problems I may be having. My favorite is Kenny G or any other elevator type music that will not sway me to sing along.

Next I think of my favorite place on earth, and in my case, it is Williamsburg Virginia. I absolutely love walking around the Historic District and try to visualize what life was like back in those days. I see myself walking the streets, talking to the people living there and visiting where they live.

I walk through their gardens and enjoy the rich smells minus the smog of modern times. I especially like the herbs and visually can feel the textures of the plants I so often take for granted. I may even enjoy a meal with them and swear I can taste the flavors of Southern cooking.

My visual trip around Williamsburg fools my senses into believing I was really there. Afterwards, I believe I really was, and nothing will prove I wasn’t.

April 26, 2017

I miss sitting out on my bench with the warm sunny skies shining down on me. It seems longer than a week since the sun shone and I was able to enjoy the outdoors.

I know there will be plenty of sunny days but I need to tap into nature to find the right balance. I did visit the garden center and got all my herbs for my herb garden and just need to find the patience to wait a week or so to plant them.

The plants are young but already giving off the fragrances I love to smell. If I can follow my dreams, my yard will become a sensory paradise. My herb garden will provide the smells I want and the running water in my repaired water fountain will give me the soothing sounds I want.

The birds and butterflies that visit my feeders along with the blooming flowers will give me my perfect Dementia Garden. I close my eyes and can already visualize the sights, sounds and smells of my garden. Now you see why I get so impatience for the sun to shine, I can’t wait to get dirt under my fingernails.

April 25, 2017

Some days I walk with a group and other days, I walk alone. I’m walking toward a better life and learning so much along the way. I’ve been living with Alzheimer’s for a long time but it seems I am learning something new about my life each day.

So many bad days along this walk that you might think I seen it all, but I’m only now scratching the surface how bad it really is. There is no adapting to these horrors I now feel, especially when I’m asleep.

I awake and they are fresh in my mind. To talk about them, you have to relive them, so I never say anything. These are the days you walk alone and hope it will soon end.

April 25, 2017

I’ve been busy the last couple days turning some projects to be displayed at the Dementia Action Alliance USA conference in Atlanta Georgia. Robert Bowles, I will box these up and ship them to you. I hope you like them.

April 25, 2017

Learn your limitations without getting frustrated. How do you do that and the answer is simple, learn to fail. You will never know if you can do something unless you try. If you fail at something, it doesn’t mean you can’t do it. It just may mean that at the time you could not do it.

If you continue to fail or get frustrated, you have reach your limit and need to learn the lesson taught you. Failures are all part of life and ways to learn the things you should leave to others.

April 24, 2017

Is a dementia advocate and dementia activist the same thing? An activist is a person who makes an intentional action to bring about social or political change. An advocate is one who speaks on behalf of another person or group.

Learning about dementia is very expensive. Some conventions cost more than a three day pass to Disneyworld and is out of reach of most people living with dementia. So many seminars are run by activists that are forcing their views upon you and charging you plenty to hear them.

Raising dementia awareness has become a huge market with plenty of money to be had. It now costs mega bucks to stand on the corner and talk about dementia. It has to be a broadway show to draw a crowd.

I guess siting on a bench under a sunny sky, listening to someone telling you their story about living their life with dementia is a thing of the past.<.

April 22, 2017

Today I finished another woodturning project.

April 22, 2017

I always wanted you for life. I never thought Alzheimer’s would steal you from my memory and allow me to continue to live. We said our goodbyes and I continue to live. These are thoughts of someone living with dementia that knows his life is fading away.

You will always remember me, you told me so often but will I remember you? I still recognize you and love you with all my heart but we are drifting apart. We vowed to cling to each other and never let go but that pull into the unknown is strong.

Alzheimer’s is destroying my brain and it is not making me forget, it’s forever removing those memories so I can never remember them again. There is no proof they ever happen.

Alzheimer’s is so cruel because it is so slow and eats at you in small bites. We look fine because you cannot see the holes in our life.

April 22, 2017

Just a gentle reminder, you are doing the best you can. Caregivers believe they own the responsibility to make everything right, but they can’t. Somethings just can’t be made to be better no matter how hard you try.

They are always thinking, maybe there is something I could be doing better and blame themselves when they hit a bump in the road. We know you are doing your best and wonder how you do it.

The sacrifices you make can never be measured and the only thing, we living with dementia can say is, bless you for doing your best.

April 21, 2017

The mom and pop shops that tell what it is like living with dementia is dying. I write little about my thoughts on dementia because of the hateful women that can’t believe these are my thoughts. They attack me personally, and not for what I am saying.

I am not the only one they attack, they will go into a feeding frenzy whenever they read something that doesn’t fit into their limited knowledge of dementia awareness.

They think they are being righteous but they are only limiting the true feelings about dementia. We only tell you our stories because they are out thoughts. I see so many of the leaders in dementia awareness becoming quite due to the pressure being put on them by these people. It is a shame these people are able to be on social media.

April 19, 2017

Well Hazel survived taking your husband, with dementia to work on the last day of the tax season. It was fun talking to the people she spends so much time with during the season and celebrating the end to a long season with them.

I no longer understand their “shop talk” but enjoyed visiting their world. So many memories came flooding back from my work days and how we sat around talking about our work. I miss those days but would never want to return to them.

I no longer belong there because my world is so different. They all made me feel welcomed and part of the conversation but something was missing, the sadness of living with dementia. Life does go on and it felt so good to be part of it, once again.

April 18, 2017

Confused and scared, that is how so many just starting out with their diagnosis of dementia, feels. I was that way, over thirteen years ago when I got the message you have dementia, of the Alzheimer’s type.

You learn ways to live with it but very seldom make peace with it. Every little bump in the road is caused by your disease and you put all the blame on it. Seldom do you think of the good that came out of your disease.

Sure you may have made friends that support you but what have you learn about yourself? Did you open up and look inside yourself and see the person you really are. Did you feel the strength and power you have, or the kindness you never thought you had? Did you stop thinking about yourself and start thinking about others? Did you find your passion in life?

April 17, 2017

Today I spent the day in my shop making something out of the wood I glued together the other day. I love making something out of scrapes of wood that may have been heading to disposal and giving them a new lease on life. I feel like I’m leaving a legacy when I’m able to turn a project and put a little of myself into it.

To me, they are only pieces of wood waiting to be thrown away but to the person I give them to, they see the love and joy I got out of making it. They have no monetary valve only the emotional bond we created when I give it to you.

I’ve lost most of my craftmanship in making things and in my eyes I see the flaws, but after living with Alzheimer’s for over thirteen years, I still see the tears when I give one of my gifts to someone and it makes me want to continue.

April 16, 2017

Here is my finish phone, I still want to put gold accents around parts of it but I don’t think it turned out bad considering I was working on it during my dementia meltdown period.

April 15, 2017

This week at our Memory Café, a friend of mine gave me a box of what she called mahogany wood scrapes, from where she works. To me it turned out to be a box full of woodturning projects and a gold mine for me.

I glued together two of the pieces so I can turn a bowl this week and can’t wait to start on it once it dries. My second phone is finished and I just need to put a finish on it. This phone is different than the clock phone I made and Hazel staked a claim to it and cleared a spot for it on a table already.

I am jumping between woodcarving, woodturning and trying to get my garden in shape, that I have little time to worry that I have Alzheimer’s and possibly Vascular Dementia. My advice to anyone living with any form of dementia to keep busy, it won’t cure it but will make living with it so much easier.

April 15, 2017

Over the years, we lost the art of being kind to one another. Turn the other cheek or look the other way died during the ages. There is now a priority to prove we are right and we will go to all means to try and prove it.

Many times, I lost playing a game with the kids because I actually won when I saw the smile on their face. My feelings were never hurt when I allowed them to win or was I threaten in any way.

These days it is different, we have to be right even with the people we love. We now put ourselves above everyone else, because they may think different then us.

I have learnt so much living alongside the Amish in Lancaster County. They show us tolerance and forgiveness and how to turn the other cheek without showing weakness. Their lifestyle is so different than mine but I admire the family values they have and their willingness to help each other. How I wish we could return to simpler times.

April 14, 2017

I know others have posted about pictures, but these are my thoughts. When you look at a picture, what do you see? Probably someone looking back at you unless you magnify it to see each individual pixel within the picture. Now you see the memories that make up that face. Each pixel is a memory that forms the eyes, nose and mouth of that face.

When you see a blemish or what may appear to be a tear, there is a memory being displayed. If they look sad, they are telling you a story. Unfortunately, we are getting away from the printed picture and most pictures are now digital.

Most pictures are now staged and you pose for them. You present the image you want everyone to see and not the real person behind that picture. The best photographers are the ones that capture your picture without you knowing.

We want to capture the best quality picture with the sharpest image and brightest colors but they don’t come close to the picture of someone living with dementia and is deep in thought.

April 13, 2017

Walk with me, don’t say a word, let my voice echo what many living with dementia feel. Be my captive audience and stay focused without texting on your phone or thinking what needs to be done. My heart breaks thinking of the thousands of people living with dementia getting exceptional care but without anyone to talk to.

Everyone thinks that if we get the proper care, we are happy. The biggest fear we live with is isolation and you automatically wonder how that could be, when we are surrounded by people that love us and keeps us busy. We are kept safe and well cared for but have you ever looked into our eyes to see what we really feel like.

Have you ever talked to us without saying a word? It gets worse once you begin to enter your later stages and we lose your method of communication. We lose the use of words but still have so much to say. We want to tell you how we feel and what is troubling us but we can’t because we lost how to talk to you and find it easier to retreat into this shell of a person you see.

Are there ways to talk to us and the answer is yes, if you realize when we are talking, I am not trying to make you understand. I am just relaying my thoughts that you cannot correct, so please don’t try.

I have so many wonderful conversations with people living with dementia and afterwards, have no idea what they were talking about. In my mind, they were not making sense but in theirs, they understood every thought. It doesn’t matter, we were communicating and they lost that feeling of isolation. I was given the gift of communication the day I learnt how to stay quit, listen and not judge anything I hear.

April 13, 2017

It is so easy to give in and give up without knowing what is behind the door you just opened. When you give up you are telling yourself there is no more options and whatever happens, happens.

This is extremely dangerous when you are living with dementia. There is no giving up in my book, get off your butt and look for that choice. People that know me can tell you I struggle at times with my emotions and have meltdowns but always find the little excuse to come back.

I have tremendous support that at times, gives me that kick to realize it isn’t as bad as it seems, and shut that door and return back to them. I never said it would be easy, living is hard, but once you open that final door, there is no more coming back.

April 12, 2017

I forgot what it feels likes to get a gigantic thorn in my finger and I can’t find it to dig it out. My imagination tells me that if I don’t dig out that sucker, my finger will get infected and fall off. I spend hours trying to find a needle, without success, and rely on anything sharp that will draw blood.

Of course, I cause some major medicals problems and need to consult a specialist. Hazel looks at it and says, that’s not a thorn. It’s a little scratch, wash it out and put on a bandage.

I try to tell her how dangerous it may be but she just rolls her eyes and smiles at me. That women is a season care partner.

April 11, 2017

Stand by me, easy to say but there are those times caring for someone living with dementia that make it so hard to do. Our disease drives you away until you no longer recognize the person we became.

You still love us but no longer understand us. We drift apart no matter how hard we try not to, but my disease is taking me places you can never come. We stop talking to each other the way we once did and cannot read each other’s thoughts the way we used to do.

Our love is still strong but maybe we are beginning to say goodby.

April 11, 2017

Living with dementia is easier if you have a safe place to hang out in and just unwind. Somewhere you can go and escape reality without any pressures. I am so lucky to have my backyard which is surrounded with a chain link fence and plenty of trees for shade.

I have my Dementia/Sensory garden and several benches placed around the yard so I can relax anywhere I want. I spend hours just working in the yard getting my hands dirty.

I can now practice my wood carving while sitting in the shade with my Rottweiler friend and companion lying beside me. I visit no care facility that would come close to the comforts I have at home. I pray my dementia allows me to stay here.

April 10, 2017

This is the time of year that I encourage everyone living with dementia or caring for someone, to consider planting a Dementia Garden or Sensory Garden. These gardens give support to sight, sound, smell and touch and are so easy to design.

I use bird feeders and plants that are colorful and attract not only birds but butterflies to my garden, to sooth my sense of sight. Next I have a separate herb garden and fragrant plants that pleases my sense of smell and wind chimes and a water feature to handle my sense of sound.

Different plants have different textures that are pleasing to run your hand over and touch. Brushing your hand over herbs not only leave the best fragrant on your hand but they feel so nice.

To top it off, grab a hot cup of coffee and sit on a bench in the middle of it. Trust me, medication can never compare to it.

April 10, 2017

Perfect, perfect, perfect, that is the only way to describe today. Jade and I spent the entire day outside puttering around the yard, getting the yard cleaned up, mowing the grass and planting the bulbs that Bernadette Ferrer sent me.

I had the opportunity to try out a new bench I got and look over the fruits of my labor of the day and wondered if they make a battery powered coffee pot or see if they sell an insulated container that would keep me supplied with hot coffee during my outdoor excursions.

Poor Jade had enough play time and only wanted to come inside, curl up and take a nap. I tried to explain to her that I was coped up in the house all winter and wanted to take advantage of this beautiful day.

She has a need to be by my side and refuses to go into the house unless I do also. She has a big bowl of water and plenty of shade but I think she is working on my routine and trying to keep me on it.

In case you are wondering, Jade is my Rottweiler and companion. I think she gets confused who the boss is and over-protects me at time. I don’t know what I would do without her but she better learn that when the sun is shining, we are going to be outside.

April 10, 2017

I wanted to get information about Vascular Dementia to put on my Resource Website but also to get a better understanding of it. Guess what I found, nothing. Every website I went to started out with a sentence or two about what Vascular Dementia is, but then goes into talking about Alzheimer’s. Most if not all were written by a Alzheimer’s group.

I am well informed with Alzheimer’s but wanted to better understand what Vascular Dementia is and how my life may be changing. I know it is caused by blood flow being blocked and causing brain damage but from what all the information I read, Alzheimer’s and Vascular Dementia are the same.

The symptoms appear to be identical along with the treatment. Due to my Diabetes, my blood pressure and stroke prevention measures are being followed so I cannot see any difference in treatment.

I am so disappointed that more information is not available for Vascular Dementia. I fought this battle when I was first diagnosed with Alzheimer’s, the only information available was for those in their late stages. This needs to be changed because people diagnosed with Vascular Dementia need information pertaining to their disease.

April 9, 2017

What happens if you were diagnosed with one form of dementia and the years go by and you develop symptoms of another form of dementia. It’s not uncommon and is not due to being misdiagnosed but rather your conditions changing.

Such is the case with me, I have been living with Alzheimer’s for over 13 years but now have every sign that I could also have Vascular Dementia. Vascular dementia is a group of conditions that cause a decline in cognitive skills. People with vascular dementia experience problems with reasoning, judgment, and memory. These changes can occur suddenly, or they may be mild and go unnoticed at first.

Vascular dementia is caused by a blockage or lack of blood flow to the brain. Reduced blood flow to the brain deprives it of much-needed oxygen. Lack of oxygen and blood can damage the brain, even in a short period of time.

Vascular dementia, sometimes called vascular cognitive impairment, is the second most common cause of dementia after Alzheimer’s disease. I am already being treated for high blood pressure and stroke risks but do not want to do any more extensive testing due to the high agitation they give me.

April 9, 2017

Wouldn’t it be great if garden centers had layaway plans so you could buy plants and they would care for them until it is time to plant them? I usually rush out and buy a garage full of plants and then spend the next couple of weeks trying to keep them alive.

I get them early because I was told they may not have them later. I got smarter and now have someone looking over my spending habits. When I try to make a stupid impulsive purchase, she gently reminds me in the way only a loving wife can do, that maybe I should wait a week or two to see what else they get in. At the time it makes sense to me and I agree.

April 8, 2017

What is your biggest challenge living with dementia. I pause to think about this then I reply, to wake up in the morning and have the strength to handle the emotional beating that dementia is going to give me.

I no longer care about the petty things I deal with, but have concerns with my emotional threads being pulled to their limits and snapping. It only takes once, losing total control over your emotions, before you really know what being scared is like.

I relate these problems toward the latter stages of dementia and not the mid stages. Mid stage dementia faces different problems and they no longer fear me. I’ve seen that and did that and I adapted to them.

These new problems are personal and emotional. They tug at my soul and makes me wonder if I may be walking out of the mid stages into the later stages.

April 7, 2017

Turning the cradle for a phone I am making, is harder than I thought. Four attempts and four contributions to the burn barrel resulted in my woodturning efforts today. It’s time to turn off my lathe and walk away before I put a for sale on it or throw it into the trash can.

The problem isn’t my lathe, the tools or the piece of wood I’m turning, it’s me. I can’t get my head on straight and think this stupid problem through. I get ever so close, and something happens.

I will find a solution, it just might take another week to finish it. Gives me something to look forward to tomorrow.

April 5, 2017

Safety comes before your heart, but try telling that to someone caring for a loved one with dementia. I write this post with tears in my eyes after getting a message from a friend telling me a secret she is carrying.

Her husband has Lewy Body Dementia and is entering his late stages. He is becoming violent and uncontrollable. His threats and attacks are increasing and she does nothing because she loves him.

This is a classic case where you pass the baton and let someone else be the bad guy. You don’t wait behind your love but you talk to his/her doctor and they will become the bad guy to stop it. If it is emanating and you can’t wait for your next doctor visit, call 911, they have trained professionals that will help you.

When I speak out for dementia awareness, safety is at the top of my discussion not only for those living with dementia but also the people you are caring for. Learn self-defense techniques to protect yourself because your heart may not be able to.

April 5, 2017

This post is one that many may want to skip today. I am encouraged to continue writing my thoughts on dementia even though some may not like them and today is going to be one of them.

Is jealousy with someone living with dementia, part of the disease or is there a reason behind it. I’m trying to ask the question without being attack but I can’t find the words so I’ll just say it. Do caregivers take on a lover to fill the void in their life?

It may not be a sexual partner but that someone that satisfies their emotional needs. That someone that tells them what they want to hear and replaces the person they are caring for. The caregiver will deny any wrong doing but did they cross their marriage vow lines. Did they allow someone into their life to fill the void that dementia caused?

April 4, 2017

I talk to many caregivers and they tell me their partner is jealous and ask if it is a part of dementia. I wonder to myself, did you give them a reason and unknowenly take on a lover.

What lesson did I learn while walking through dementia hell this time? Well it hurts like hell and I don’t want to spend any more time there. My one leg grew longer so I can now kick myself in the pants and not let people, “get under my skin”.

I may have to return for a refresher course on that one but I can put it into my lesson plans when I’m speaking to someone with dementia. I knew the road of dementia would be rough with many obstacles along the way, but learning how to handle the emotional part is something I’m still learning.

Speaking out on the emotions of dementia is hard to do without coming across as some old man living with dementia. It’s a part of the path that very few understand unless you are walking it. It is so easier to talk about the medical conditions and symptoms but the darkness is different.

April 4, 2017

What a beautiful day, I sat on my bench and watched the chickens peck. Next I got the old John Deere out and cranked it up and mowed the grass. My lines are pretty straight considering I no longer have my driver’s license. I am so happy. I didn’t run over any bushes and only ran into the fence twice.

I had my Boston Red Sox hat on and the biggest smile just going back and forth the yard. I had my ipod plugged in my ears with Christmas music playing. My neighbor must have heard me singing because he yelled over the fence, having a good time are you. My God it’s good to be back.

April 4, 2017

Look at me, my head is beginning to pop out of the hole I was pushed into. I spent some time outdoors and I’m thinking about returning to my woodworking. When I fell, I stopped living. I had no desire to grab a hunk of wood and turn it into something someone may enjoy.

I just wanted to hurt someone. I couldn’t tell if the sun was shining or not and for the moment, lost my purpose in life. Why am I dwelling on this topic and the answer is so simple?

People have no idea how easy it is to destroy someone living with dementia. It happens all the time. A snide remark that may be part of your daily conversation that you have no idea that you are destroying someone.

Your first remark is, that’s not what I meant and then defend yourself for crushing the other purpose. You move on without trying to pick up the pieces and making things right.

Caregivers are noted for this because of the intense pressure they are under. They hate someone because they are doing better than the person they are caring for and who better to show their hate then the person living with dementia. They are vulnerable and usually coward when you attack them.

People living with dementia don’t get on social media and attack each other, they know the damage they could do and have no desire to do that. They often complain about the moon but rarely would they take it to a personal level.

We now live in a world that we do not have to be accountable for what we do or say. If we yell loud enough, people will think we are right. i was fortunate to be surrounded by angels that stopped for a moment from caring for loved one, and felt the need to help me. Not everyone living with dementia is that fortunate.

April 4, 2017

Dark secrets, those little stories we can’t share with each other. I have Alzheimer’s and there are secrets hidden in a chapter of my life that I cannot share. My dementia takes me places that you would never believe.

You hear me talk, but I will never allow you to see the hidden horrors of dementia. I can’t allow you to see the broken person I became. You look at me and see a person that lost so much, but again, I am only allowing you to see what I think you can handle.

It’s better to pack on the cosmetics and hide all the blemishes. You see this fragile old man, living with dementia but never the strength it takes to hide my secrets. Do you ever wonder what dark secrets the person you are caring for is hiding or what that chapter is like that they are hiding from you?

April 3, 2017

What is the next step once you have an emotional meltdown while living with dementia. You can’t stay down there, but you don’t have the strength or desire to pull yourself back up. Many are trying to pull you back to your normal and may feel the unintentional feedback of anger that is still present.

Most of us still carry a sting when we talk and may not be the most pleasant to be around, but don’t give up on us. The more meltdowns I experience, the harder it is to return. The time will come when I no longer have the desire to return and let nature takes it course.

Our care partners must realize we are at the peak of vulnerability and emotionally fragile. Our bears are going back to sleep so don’t poke them with, get over it.

April 3, 2017

Where does someone go to learn about dementia? I suppose you can go to the library and take out a book. Most get on the internet and social media and filter out through all the garbage and hope for the best.

ut what if you want to become a teacher on the subject, where do you learn. You must first attend the School of Hard Knocks and live with dementia. The best educators will stumble when they try to explain the emotions of dementia, but ask anyone living the disease, they can tell you in detail.

Some experts never stepped off the cliff and free fell to the bottom. The may tell you what they think it is like because they care for someone with dementia but unless you felt the air leaving your body, you have no idea.

Beware of the expert that tries to tell you what it is like to free fall, without ever doing it.

April 2, 2017

I’m sitting on the porch and swinging. Not really, I’m out here on my deck sitting on my glider and humming. I’m having problems writing my thoughts on dementia without offending anyone. I seem to only be able to put fluff into words and make it a post.

Dementia is still running through my mind. in all its horror, and I am still capable of describing it to the people that have a need to understand it, but you only need to be punched in the face so many times before you say, hey that hurts.

This is a new experience for me, I am pretending to be a person that is not me. It is so hard for me to pretend I don’t have Alzheimer’s to make others happy.

April 2, 2017

Once you get that diagnosis, it’s official, you will be moving into a different life. You will forget things and may not be able to do the things you once enjoyed. You may just stop enjoying certain activities because your mind is consumed with other thoughts.

Then the day comes when you realize you are not living the life you once did. This is the hard part of living with dementia, when you realize you have changed. Some feel bitter and others accept the changes and grasp their new life.

Accepting the fact that certain things will never go back to the way they were, is part of living with dementia.

;

April 1, 2017

Living with dementia I talk about my inner peace, and how when I stumble and fall, I lose it. When I do, my world gets turned upside down and the emotions I have buried, surface.

Playing relaxing music will not get it back nor bright lights. Medication will dull your feelings but not bring back your inner peace. You can’t go to Walmart and try to pick up a jar, but I don’t think you can buy inner peace.

You never really lose it but rather lose contact with it. You will find it again once you let go of the events that caused losing it and you will once again have control over your emotions. I wave that flag all time when I’m speaking to a group about dementia awareness.

There is no magic in finding your inner peace if you are willing to let go of the things bothering you and except it.

April 1, 2017

Climbing out of a hole that you were pushed into, is harder than when you fell into it. The effort is greater because you wonder if they were justified into pushing you? You have a tenancy to own the blame for what they did and start to think, maybe they were right and you belong in this hole.

Then my little voice whispers in my head, there is a job to be done and only you can do it. The people tugging me to crawl out, are the very people I may have helped along my journey. They are the ones whispering to me, don’t give up, you have helped us understand what our loved ones are going through.

What a show of faith, even though this body and mind is broken, God will be working through me helping me with my message. I read your posts and messages and they have touched me in a way that is lifting me out of the hole.

I will not let people defeat me, only my dementia will do that. I will not hide in the shadows only waiting to die. I will try to better explain myself and my thoughts, without the raw emotions of dementia doing the writing.

Most of all, I will not try to sugar coat my thoughts just to please the few that oppose me. I must be true to you and to, myself. I understand now that my story needs to be told and only I can do that.

March 31, 2017

People need to realize that it is their responsibility to try and understand what someone living with dementia is saying, not the other way around. I can’t make you understand my thoughts, you need to ask me what I mean when you don’t understand.

March 31, 2017

The last thing someone living with dementia loses is their integrity. After that, they have nothing. The other day two women invaded my personal Facebook page and had a feeding frenzy on my integrity. They didn’t even put a dent into it put they shook the bear and woken this monster of an angry man that now must deal with anger issues.

Why do sick people do that? I can’t feel sorry for them because they know exactly what they are doing and they enjoy it. They go from one dementia support group to another and targets the most vulnerable member and never argues about the subject being talked about but they go for the jugular vein and viciously attacks their integrity.

There is a special place in hell for these creeps and I want to see them there one time I pass through. Some define them as bullies but I see them as they are, low life individuals who refuse to respect someone living with dementia. They get their kicks out of shredding the last thing they have of any value to them, and then stands back looking for their next meal.

There is underground current flowing, we may not see a cure for our dementia, but these waste of life are going to be stopped.

March 29, 2017

I’m sitting at McDonalds not knowing who I am or where I am. I can’t remember my name or what city or town I am in. No one speaks to me because their mothers taught them never to speak to strangers.

I don’t know where I want to go and I wonder, am I homeless or someone living with dementia.

March 28, 2017

What were you doing 38 years ago today if you lived around Harrisburg Pennsylvania, close to Three Mile Island Nuclear Plant. If you were like Hazel and I, you were packing up the kids and whatever you could gather and evacuating the worst nuclear accident the United States has ever seen.

You had little time to decide what to take with you knowing you may never return. Only locals seem to celebrate this diseaster anymore.

March 28, 2017

Through the years, I have learned so much about myself while living with dementia. I found out that I can cry when I thought there was no more tears to shed. I am more of a fighter then I ever thought, because I am learning to tolerate the bumps in the roads and not just react to them.

I am even beginning to like the person I am becoming. The harshness of dementia shows along the edges but inside, a new person is living. A sensitivity I never had is present and an uncontrollable willingness to help those that need it get back onto their feet is always present.

When I was diagnosed with Alzheimer’s, I wanted to become a different person and not one that allows dementia to overtake their life. In my heart, I knew it was possible regardless what I was being told. With the help of God and all my friends and supporters, I am blazing a path most experts would say is not possible for someone living with dementia, but I don’t want to be like everyone else.

March 28, 2017

How do I escape from living with dementia? I usually throw myself into my woodworking projects but sometimes the unpreventable nicks and cuts I get, makes me look for something different. My hands get sore and I need to take a break and consider what to do next.

We are heading into the rainy season so sitting out on my bench is not an option. So many people are keeping an eye on me that it is even hard to get into trouble without being noticed. Don’t mention turning on the TV because I promise I will scream.

I could grab my Kindle and read a good book but I feel restless. Maybe I will reach back into the bag of things I think I can no longer do and try something I once did, win or fail, it may help me to escape my dementia.

March 27, 2017

It’s garden planning time and this year I vow it to be different. Last year I spent over $1,000 on plants and they all died. My flower beds were beautiful but my budget can no longer afford that expense. I spent another fortune on mulch that disappeared over the winter which leads me to believe there must be a better way.

I consulted several gardening experts and they all suggest planting some type of flowering bushes but the types are limited. I want lots of color in my gardens with plants that bloom for over a week or two and last year I planted hundreds of annuals that gave me the color, at a price, but also dies off.

This year I am leaning toward some other form of ground cover instead of mulch like river stones or pebbles. Instead of planting hundreds of plants in the ground, I will use planters place in the garden mixed in with some low flowering bushes.

On my deck, I have a raised herb garden and planters that hang on the railings. I also have coffee tables sitting beside several chairs with smaller planters on them. This makes a nice relaxing area to pass the time and I want to duplicate it somehow in the rest of the gardens without that huge expense.

For years I wanted a dementia garden with purple flowers that are not only fragrant but pleasant when you touch them. Each year I try but fail. Maybe my wish list is too great and I have to sacrifice my desires.

Any advice would be helpful to help me with my dream of drawing butterflies and creating my own sanctuary that last more than a month or two.

March 26, 2017

It’s raining outside and you may think it is a dreary day but I was given the gift of optimism and see things a little bit different. I see it as winter being washed away and the bright colors of spring being watered. Maybe it is the poet in me that is surfacing or maybe it is my love of life and happiness that just overcomes me at times.

Spring to me is like walking out of the shadows and back into the sunlight. Colors are more vivid and not the dull contrasts of winter. I am not confined to the house and I can breathe again. It reminds me of regaining my freedom, kicking off my shoes and socks and running barefoot in the grass.

Then this little voice, I assume it is Hazel, calls out to me, Harry did you clean up the dog dirt.

March 25, 2017

Another project done, my Clock Phone.

March 25, 2017

I am sitting here rocking to the 50’s and 60’s and wondering what I want to do today. My new carving tools should arrive today and I’m anxious to try my hand at face carvings. I have so many woodturning ideas floating around in my head and several bird feeders I would like to build.

Even though I am living with Alzheimer’s and all its side effects, I have dreams for the future and will continue to use my remaining time wisely. Sadly, less time is spent on dementia awareness and more of my time is spent on my own wellbeing.

I should explain that I used to spend all my time trying to raise awareness and work for a better life for all of us, but Alzheimer’s told me, you aren’t no Superman, and passed along a couple of bad days to prove its point.

I now know that our care partners are not the only ones that needs to take care of themselves, but we do also.

March 24, 2017

While strolling around down in the pits of dementia, I needed to focus on something to bring me back and decided to finish my United Against Dementia snow globe. Just shake it and watch the snow flow.

March 24, 2017

Teachers are required to take refreshers courses to ensure their teaching methods are current and they can teach their lesson plans accurately and their students get the best results from their teachings.

What if you are a person living with dementia and are trying to teach dementia awareness? There are no college level refresher courses to take, so life found a very good alternate. It is call a bad day and is designed for the person that may think they know if all but needs to be reminded what dementia has to offer.

It’s a real-life reality check and you would be wise to learn from it. It is brutal and holds nothing back but when the day is over, or in my case several days, the sun comes out and your passion of life returns.

March 23, 2017

You never know lonely until you step off that cliff and hit bottom. You don’t float down, you crash and burn. All your bent up emotions flair to life and ignite into a uncontrollable fury. Don’t tell me you know dementia until you walk where I do.

A bad day for someone living with dementia is nothing like a bad hair day. If you want to know what it is like, talk to me today. If I don’t bite your head off and kick you out, you will understand what my world is like.

People ask me why I never write about a bad day and this is why. I am hateful and get downright ugly. I am so far out of my normal character that you would not want to spend a minute with me. On a bad day, there is no help. No one can get close enough to you to help you. You are so alone.

Maybe bad days should be left untold. This hate comes out of you which you never knew you had. Evan God shies away from you. He waits until you are done, then gently picks up the pieces and gives you the strength for that next bad day.

March 23, 2017

Crash and burn time is here. My world is crumbling and I’m falling into one of the pits of dementia. I can usually tell when a bad day is knocking when I sense a dramatic change in my mood.

Out the window flew the happy go lucky guy and in walked the stay the hell of my way guy. My sense of tolerance is at its lowest and the trigger on my anger only needs to be bumped before it goes off.

You would think that if I saw it coming, there would be something I could have done to prevent it, but it doesn’t work that way. I need time to myself and push myself into doing the things I enjoy.

The sign said, you don’t belong here and I will be leaving as soon as I can. I will not allow Alzheimer’s to control me and turn me into this monster I don’t want to be. I’m a leader and will find my way back into the sun.

Sometimes it takes me longer to swat the pesky fly off me.

March 22, 2017

Haven’t you learned anything this year one of my teachers asked me one time. I was shocked because at the time I thought I was pretty darn smart. It took me many years before I realized how dumb I really am.

Now that I’m older, I never consider myself smart, just well informed. Maybe it’s my dementia, but I have learned ways to look smart. I perfected the what stupid thing did you just say look, even though I have no idea what they were talking about.

It usually works every time and I walk away wondering if I’m that smart or are you that dumb. Works for me.

March 22, 2017

Acceptance is sometimes hard to swallow. Your life is going to hell and there is nothing you can do about it. It is what it is just flew out the window. You are trying so hard to get a handle on your life, but the days go by and you are no closer to finding a solution.

I could be talking about dementia and awakening to the realization that you are no longer the person you once were or any other situation that comes up in your life.

I preach the word of acceptance but when that door slams into your face, it is hard to disconnect and listen to what I am saying. I know you need to accept before you can advance, but try telling that to someone living with dementia.

One thing is certain, we will find a way and once again the sun will shine.

March 21, 2017

The status on the container I filled with beads and resin is showing signs of giving up and becoming hard. This was my first attempt, unsupervised, to pour a “mold” so I could turn it into something worthwhile.

LFor two weeks it sat there in its liquid form, defying me, but I am winning out because it is becoming a sticky gooey form that will give me nothing but satisfaction when I see it spinning around on my lathe.

You may be wondering what I did not wrong and I’m pretty sure nothing. I’m just testing my patience.

March 21, 2017

Yesterday I received my new purple cane. Why do I need a purple cane when I have a fairly new black one and the answer is simple? It’s me. I wobble, I stumble and yes, I still fall but my purple cane tells the world I have dementia, and proud to be living with it.

A white cane tells the world that the person is blind, my purple cane says, he has dementia, stay away, he has a story to tell.

March 21, 2017

My loved one just wants to sit by themselves, what should I do. Ask yourself, are they safe, are they comfortable and most of all, is their coffee cup full. If the answer is yes to all those, let them be, they will tell you when their cup is empty.

Our minds are slowing down, and so is our bodies. Trying to live in isolation is a different thing but sitting in my chair and gazing out the window and maybe reliving in my mind, a different time, is perfectly ok and healthy.

You as our care partner needs your “me” time, and so do I, living with dementia. I need to find my escape and not feel a need to explain my lack of interest in the world. I need to catch up on all the internal changes that are occurring and look for different shapes in the clouds.

I’m adjusting to my new world and one you don’t understand. Sit with me and let’s figure it out together.

March 20, 2017

Do I have a monkey sitting on my shoulder? I read some pretty good articles over the years with my name stuck on them and wonder how long this boat is going to float.

When I started writing about living with dementia, I wanted to be inspirational and motivate you into doing things the experts say you can’t do. That darn monkey kept me true to my vision and I thrive on seeing the results all of us are making.

People that know me can tell you I always had a monkey with me. not a live one they scare me, but figurately. For years my profile picture was a monkey but I had to change it because it didn’t make me look professional.

Somehow looking professional never impressed me and I had to get dirty in order to tell my stories and show you they were true. My boat wobbles now and sprouts some leaks every now and then but she still floats and continues to carry my message.

When I look over my shoulder, my monkey is still sitting there, keeping me honest.

March 20, 2017

It’s a new day, time to put on your happy face and pretend everything is ok. Can’t let anyone see the damaged person you became and maybe worry about you. It is easier to give the appearance of peace and tranquility than explain what is bothering you.

Living with dementia, you fight many battles but the hardest is pretending everything is ok. Big boys and girls don’t cry, they suck it up. Then they are alone and that is when they fall apart. No one sees them and there is no one there to help.

I remember the first step I took when I started to walk on the dark side of dementia and wanted to step off the edge. No one was there, so I thought, until the gentlest of voices started to talk to me. I listened to only find out I was hearing my own very soul.

I have found my inner peace that will forever be walking within me. The angel that was assigned to overlook me turned out to be my very soul. I only need to have faith in myself knowing whatever dementia throws at me, I can handle it.

If I ever need help. I only have to look up and ask for guidance.

March 18, 2017

The song says, when you walk through the storm, hold you head up high. Almost impossible to do when you are living with dementia. This storm is so fierce you just want to bury your head in the sand and make it be over.

The brave and foolish may tell you that it isn’t so bad until it is their time to face a really bad day. They tell me that Alzheimer’s is a long goodbye until you gradually fade away. We all know this is not true because we all wear battle scars to prove otherwise.

What we do know is that we will weather the storm and pass onto a more glories life making any hardships we faced, worth it.

March 18, 2017

I’m walking down a path and hear footsteps behind me, I turn around but of course there is no one behind. I am walking on the section of the path of dementia that no one walks on. I am going to visit a friend and the only way to reach him is by walking down this path.

Nobody walks along this section because you will see all the raw fears of dementia and feel all the fears that are there. I know he is home and if I want to have a conversation with him, I have to go where he lives to visit him, because he can longer come to me. I know once I reach him, we will have a wonderful time.

You may be wondering where this man lives and I will tell you he/she lives in any care facility maybe sitting by the window and looking so alone.

March 17, 2017

I have dementia, talk to me. Better yet, sit there and listen to me. Don’t fidget with your damn phone or try to do something else while pretending to talking with me.

For just once give me your full attention and have a conversation with me that we need to have. Let me tell you about my world and my fears without telling me how to fix it.

You are losing me to dementia, why don’t you want to talk to me?

March 17, 2017

Opps, I may have done something wrong with the way I did my wine glass bead project. I checked on it this morning and the resin is still kind of sticky. I thought after a day it would be almost hard but maybe I should give it more time before I throw it in the trash barrel.

If I can get myself moving, I want to finish turning the ear piece and the cradle for my clock phone. Some days it is so hard to motivate myself into doing anything, but if I don’t, Alzheimer’s would gain another step in controlling me.

It would be so easy for me to say, I’ll get it tomorrow but tomorrow will come and I would find another reason to put it off. You can’t motivate me, I need to motivate myself, I need to play the recording of that grouchy old man saying, get your butt off that coach and do something.

March 16, 2017

All the things I am doing and all the fun I am having, I had to be reminded I was still living with Alzheimer’s and how easily the shadows can overcome me. I am gripped with a feeling of hopelessness and have no idea why.

I woke up this morning, lost within myself, and fighting to return to someone near normal. I know it will pass, but until it does, I am stuck feeling sorry for myself. I get so wrapped up into this fantasy world I am living in and the door of reality opens wide and shows me things are not what I believe them to be.

I cannot hide or run from my future, it is racing to meet me. I think my good days are my normal but they are not, they are gifts to help me with my future. The emotional part of Alzheimer’s is so much worse than any damage it does to me.

March 15, 2017

Tonight I attended a meeting on using my smart phone and found out what it can do for me living with dementia. I have a major dislike for my phone until someone spent some time with me and showed me how it can become my own personal assistant.

Let’s say I’m out walking Jade and get lost. Do I get down on my hands and knees and ask Jade for directions home, or do I get my smartphone out and ask Siri. “take me home”. Siri is a built-in Apple personal assistant that is activated when you press the Home button on the phone or press the microphone symbol and it recognizes certain voice commands.

When you say, “take me home”, it will determine your present location and display a map showing directions to your home. Beforehand, Siri needs to be set up so it knows where home is. This is all done in the settings.

You can call anybody in your contact list with the voice command, “call XXX". I don’t have to remember Hazel’s cell phone number or search through the contacts to call her. A simple voice command will do it.

My smart phone will send me a reminder when I should take my medication and answer so many questions that I may have. I thought my phone was made to irate me and make my life miserable, but I now realize it can make my life easier living with dementia.

March 15, 2017

I try to give Hope, inspire and motivate people living with dementia but I have a feeling I could be doing so much more. Something is missing and I just can’t put my finger on it.

My woodworking skills are improving and I’m feeling pretty good about myself but, there’s that but again, something isn’t in place. After all these years, we are still talking about taking baby steps toward dementia awareness and we are nowhere closer to a cure then we were 13 years ago, when I was diagnosed.

Some say, look at the progress we made over the past couple of years and frankly I’m not impressed. I still see so many struggling with the effects of dementia and only us living with it, cares.

Maybe it’s the weather, but I’m disappointed in the progress when you look at all the hard we put into it. It is time for a major attitude change, and it isn’t mine.

March 14, 2017

Life is so unfair. I’ve been living with the diagnosis of Alzheimer’s for over 13 years and living a meaningful life, but many are not so fortunate. Each of us are different and there is no comparison especially when it comes to how long we will enjoy life.

Many get diagnosed early and find ways to adapt to their illness, and far too many live with their disease until they finally get a proper diagnosis. Some believe you can be living with the symptoms of dementia 10 years before you get diagnosed.

Others don’t want to be tested until they enter into their later stages for reasons only known to them. I’m told so many times, mom or dad just got diagnosed two or three years ago and now live in a nursing facility. You have been living with your diagnosis for over 13 years and are so active, how is that even possible.

I ask how old mom or dad is and they may reply, 80 but what does that have to do with it. I remove my glasses, rub my head and try to explain but usually it does not matter. People still think you have to see the results of dementia before you can possibly have it.

We have come a long way but still have so far to go.

March 13, 2017

I feel like a bobble head when I’m walking. I’m all over the place walking down the street. Hazel is starting to call me a doublewide. My sense of balance is getting worse and is more pronounced when I’m walking.

The only thing preventing me from kissing the sidewalk is my cane. I wouldn’t be able to walk without it. My balance problems are not caused by may Alzheimer’s but stems from my diabetes causing peripheral neuropathy.

The nerves in my feet are effecting my balance and making me look like a bobble head. Isn’t it great getting old.

March 12, 2017

There should be a law against the highs I get on living. I pray I am not the only one that reaches those highs, looking down over the mountains I have climbed. I am living with Alzheimer’s but found ways to make the most of what I have.

I pinch pennies and always get the most out of my bucks. It wasn’t always that way, I was angry and walked around in denial, and blame everyone else besides myself for my problems.

It took a while but I came to realize that I was so fortunate to have what I have. I built on that foundation and not only found inner peace but a beautiful world.

March 11, 2017

Relaxing jazz playing in the background makes me write a completely different post. I don’t even know these songs but I’m humming away. It’s funny that I can’t write anything negative about living with dementia because the music has me floating on a cloud.

Music does that to me, but it must be the relaxing verity. Kenny G is my ultimate favorite followed by Silver, Wood and Ivory. I’ve met these two women, one plays a piano and the other flute like instruments and run into them at least once each year but always remind them that their music carried me over so many rough times living with dementia.

Try music for relaxation, it needs to be soft and the volume turned down. Music too load or with a fast beat may cause anxiety so pick the music you listen to, carefully.

March 10, 2017

Would I be as forceful and vocal about dementia awareness if I wasn’t living with it? Would I have ever learnt what it is like living and breathing this horrible disease and walking in the shadows of dementia? Would I even want to be part of the dementia community if I wasn’t thrown into it?

When I look at all the wonderful people I met and all the support they give. knowing their own plate is full and their knees are buckling, somehow they find ways to help others and most of all, not being appreciated for what they do, I would never have made their friendship, if I wasn’t living with dementia.

If I have not had that horrible diagnosis, I would be too busy doing other things and not caring about those living with dementia. I may not even understand or want to know about dementia because my life is better not knowing. I would be ignorant that a World of Dementia even existed.

God saw my life as being different, and I was diagnosed with dementia, of the Alzheimer’s type. He saw to it that I had to learn the good, the bad and the ugly of this disease. He worked with me until I found my passion and lit the fire so it could burn as strong as it is today.

The day came when He was satisfied and told me to go out into the world and spread what I was taught. I followed His lead and found this wonderful World of Dementia gives me the strength to raise awareness and fight the bigotry that is shown against us.

March 10, 2017

Last night after Hazel got home, I backed the car out of the garage to show her my newest additions when I spotted something on the floor. It looked like a puddle and was growing. I found out that a brake hose was leaking and that was causing the puddle.

That you God for waiting until Hazel was safely home before it broke. I was in a panic worrying how I was going to get the car to the garage to be repaired without having any brakes.

Before Alzheimer’s, I would have just replaced the hose myself, but now it would be a safety hazard. Our newest adopted family member, who is a truck driver, called last night and said when he gets back home this morning, he will be there to replace the hose.

I can’t say it enough how blessed I am.

March 9, 2017

I’m too damn busy to know I have dementia. I wouldn’t have it any other way but it gets hard at times trying to tell people I was diagnosed 13 or was it 14 years ago, with dementia, probably Alzheimer’s. Last night at our Memory Café, I told everyone that If they wanted to talk, throw something at me and I will shut up. I noticed this man standing up and I stopped and asked him if he needed something. He said he has a bad shoulder and couldn’t hit me to get my attention so he thought he would stand up.

Needless to say, I lost it, I was still laughing when we ended the Café. Hanging around people like that makes me appreciate how blessed I am with the friends I have.

March 9, 2017

I walked by the mirror and screamed, yikes what happen to you. I am no longer that virial man I once pictured myself being. I look like someone drugged down 20 miles of dirt road behind a horse and buggy.

Living with dementia does that, but also getting older does to. Makes no difference to me, I wasn’t born to win beauty contests but I was given a passion to help others.

I was given that inner beauty that you don’t see in a mirror, you have to get to know me to see it. Most people living with dementia are like that, you look at us and say, damn your ugly, but then you talk to us and that light of inner beauty reaches you.

March 9, 2017

It’s time to love this new life you have living with dementia. Stop with the doom and gloom and quit complaining about the hand that life has dealt you. Dementia doesn’t care how much you hate it, it will continue making you miserable.

Be thankful for the things you are still able to do and by all means, learn new things. Don’t waste your breath telling me that your loved one is incapable of learning new things unless they are in their late stages and unable to learn new things.

Most have a long list telling me why their love ones are just waiting to be picked up and I could just cry. You are giving up and leaving this life before your time. I may want to become an astronaut but don’t have the abilities, but you can show me pictures of outer space and let my mind take the journey.

You can help me stay in my world until the day I am called home.

March 9, 2017

Are you ready to step away from your old life and into this new life your diagnosis of dementia is directing you? I don’t mean breaking away from your old life but realizing there will be many things you will not be able to do anymore.

These things will become unimportant to you because you will learn so many new things to improve and enjoy this new life you will be living. You will no longer live in denial nor be afraid to talk about your dementia.

You will come in contact with pesky people like Harry Urban, me. who will tell you to get your butt off that chair and do something. Quit waiting on the day you die and start enjoying the beauty that surrounds you. Start to like yourself and find the joys you receive by helping others.

In other words, join us and help change how the world looks at dementia.

March 8, 2017

You know you want to say it, why don’t you. I know I can have a wonderful life living with dementia. You will have bad days and fall into what I call the pits of hell, but if you don’t stay there, life can be wonderful.

I always get push back with people saying that it is easy for me to say that because I am not in the late stages. They care for someone and it is not anything like wonderful.

You made your point and broke my heart but what about those tens of million that are not in their late stages but may need a little ray of Hope? I will continue spreading my message but also realize that some will never hear it.

March 8, 2017

It’s like starting over once you receive that diagnosis of some form of dementia. Your world stops and it may be several days before your heart begins to beat normally again.

The medical profession needs to do a better job in easing us into the world of dementia and not just dumping us there and walking away. We are fortunate that Penn Medicine Lancaster General Health offers a 6-8 week course when you get diagnosed.

Here is when they mention our Memory Café at the Health Campus and the continuing support we offer. You need not be alone and worry by yourself, join us.

March 7, 2017

I’m not sure what I have planned for today besides cleaning up my shop. I sure made a mess from making my bowl. When I posted my colored pencil bowl, I received so many heartwarming responses but I failed to tell you about my journey up that mountain, only what I had when I got to the top.

I was talking to Guy Burnett on one of our Friday night chats we do, and I was telling him about this crazy color pencil bowl I wanted to turn but I had no experience with resin and gluing up the pencils. He explained to me what steps I would have to do and how to safely use the resin.

At this point, I had a pretty good idea what I had to do. If it wasn’t for my son-in-law Keith Swanger, I would have never been able to start this project. He is more than a son-in-law to me, he keeps me connected to my woodworking and is that little voice in my head that is constantly asking, what are you trying to do. He never gets annoyed when I pull up my stool just to watch him turn.

He helped with the prep work but allowed me to do the work. Stacking up the pencils into a form was a hoot, but he poured the resin over the form I made. He watches me so many times spill my coffee, that he assumed Hazel would be a happier camper if he did the pouring.

I now had the block that I would be turning and only had my Alzheimer’s to overcome in order to complete it. I fought to stay focused and not let my mind wonder. I have peripheral neuropathy, that is caused by my diabetes, which makes me walk with a can due to balance problems.

Standing in front of a lathe for hours tends to be a problem for most but throw in dementia and peripheral neuropathy and you only begin to understand the difficulty I have. The journey was worth what I received in the end.

I push hard for those living with any form of dementia to step outside their comfort zone and try new things. Don’t use the excuse that you have dementia and can’t do it. I will show you my cuts and bruises and tell you how wrong you are. You may need supervision and the desire to do it but you can do anything your mind tells you.

March 6, 2017

Isn’t it funny how time slips away? Time is that magical cure that heals everything, so we think. It can heal a broken heart or help us forget the things we no longer want to remember.

I’ve heard, give it time, your body needs to adjust to that new medication. The one I like the most is, give it time, you will forget. Very seldom do you ever forget, some pains never go away.

I have no concept of time, it doesn’t seem to mean anything to me anymore. If I am late for something, my guess is that it will go on without me. If it is true that we forget things in time, will I be forgotten.

March 5, 2017

I’m standing on the bottom of this mountain, and wondering if I can climb it. I am going to start on my colored pencil wood turning and asking myself if I bit off more than I can chew. I could get away with saying my Alzheimer’s prevented me from doing it, but that would be the biggest lie I ever told.

I was never afraid of failure, but I am afraid of doubting myself and not even beginning to try something new. The Harry Urban I know is telling me that it may turn out to be the ugliest thing you ever look at, but facing and conquering those fears will make what I see when I reach the top the prettiest, or not, thing I ever did.

I will be proud, maybe not for what I turned but that I stepped outside my comfort zone and put the confidence back into myself. This climb I will be doing is not about being at the top, but pushing myself to be the best person I can be, living with dementia.

March 4, 2017

Last night Hazel and I walked into our Memory Café at St. James Church in Lititiz PA -and was greeted with smiling and enthusiastic faces. I said hello and asked what is happening? They told me they were going along and booked their reservations.

These wonderful friends will be joining me on a dementia friendly cruise hosted by Lori LeBey on November 11-18, 2017. We spent the entire Memory Café time talking about the cruise and what it means to us.

This is differently turning into a Cruise of Hope and bringing the dementia community together and will be recorded as the Guinness World record for the largest Memory Café ever.

I was bombarded with questions I could not answer but told them to contact Kathy Shoaf who is our cruise planner and she would answer all their questions. I did download a planning pamphlet off the Alzheimer’s Speaks website and you can download it by clicking on the link below.

https://www.dropbox.com/s/x72qt1x46dii63c/122000824.pdf?dl=0

March 3, 2017

I stumble and fall, then pick myself up. I get so angry living with dementia, then I’m reminded how bless my life is. I ask, why me, but would I rather someone else beside me be living my Alzheimer’s instead of me.

We all like to complain about politics, finances or our medical conditions but how many of us give thanks for what we have. I have learnt the art of giving thanks early on in my disease when several miracles happen to me.

You may call them strokes of luck, but I see them has miracles. Living with the diagnosis of Alzheimer’s for over 13 years and living such a blessed life must be considered a miracle. Stop complaining and say, I live a great lfe.

March 3, 2017

Another one finished, slap a stamp on it and mail it to Minnesota.

March 3, 2017

So many threw me a challenge, I can’t refuse. They asked me, why don’t you try to turn something out of colored pencils. Why not, they look so cool and how hard could it be?

This weekend Hazel is taking me to get boxes of colored pencils, resin, super glue, gloves and of course, another box of band aids. Keith doesn’t know it yet but Sunday he will be helping me figure out how to glue up this mess so I can turn it.

I watched several videos and staid up last night figuring out how I was going to turn it. I’m willing and able to tackle this challenge and hopefully next week I will post a picture of this crazy old man holding up something he turn out of colored pencils.

March 3, 2017

“It’s not what you take when you leave this world, but what you leave behind you”. You may be the smartest or richest man alive, but will you be remembered when you die. People will miss you but will they remember the things you did to make this a better world?

I want to be remembered not for the fame or glory but because I worked my butt off trying to give people a better quality of life, living with dementia. I volunteered to walk through the hells of dementia so I could better understand it and tried to tell you what I saw.

I opened my life to some of the cruelest criticisms and disbeliefs but I will do it for as long as I can. I learnt tolerance and want to leave my thoughts on dementia behind me.

March 2, 2017

I don’t have enough to do on these cold, windy rainy days so I decided to update my Dementia Publications and Resources ebook that I started several years ago. The ebook idea came to me when I created the Forget Me Nor - Pathway To Knowledge group and wanted a place to collect resources.

This group is great If you know about it but when I’m out speaking, so many tell me that they are not on Facebook. I also found it very difficult for those living with dementia to sort through the mess to find what they are look for. I then started to put all my booklets and pamphlets and other dementia related resources on a cd that I distributed at my talks and group meetings.

This worked out great until I realized I was burning 50-60 CD’s for each meeting. Not only is this costly but time consuming for me. That is when I decided to put all those pdf’s files up in the cloud, create a ebook in pdf format and a format suitable for a Kindle

It takes a little time to create the ebook but life is so much easier each time an organization publishes a booklet in pdf format and I only have to add it to the book. Why in the world didn’t I think of this before?

My goal is for you to download your free Dementia Publications and Resources ebook so you can use a link in the book to download all the latest pamphlets from the Alzheimer’s Association, Office of Aging and any other dementia organization that provides them

March 2, 2017

March certainly came in roaring like a lion, hopefully it will go out like a lamb. My poor trees look naked outside after losing all those branches. Won’t be long before the rainy days of April are upon us and we can look forward to the blooms of May.

Old man Winter is walking away from us and Spring is beginning to smile. Have you ever wondered how someone living with dementia tells time.

March 1, 2017

You think I’m smart. You should see my friends. Together we make one powerful thunder storm. You ask who are my friends and I will tell you proudly, they are the dementia community that lives in every city, town and borough in the world.

We don’t rely on book learning, we live it. Call it the school of hard knocks or reality central, we can give you the facts on any aspect of dementia. We don’t care about the details that neither of us would understand but we do know and understand what makes us tick.

I will never stop saying, if you want to learn about dementia, ask someone living it.

February 28, 2017

I can see. Yea I know dummy, you opened your eyes. That happens when you begin to understand the World of Dementia. You read the books, heard the gossip but never “saw” the things we do.

You may know first hand how horrible our world is, but do you know how wonderful it can be. You will if you watch Welcome to my World with Harry Urban, coming soon.

We don’t talk about dementia, but how, we living with it, overcome it. I hope to capture the people and not only the disease.

February 28, 2017

One of the things you never want to do is, open the window of an airplane when you are flying at 20,000 feet. Another is to try to argue with someone living with dementia. Both will lead to disaster with no winners.

Ask any caregiver what they learned after caring for someone for a period of time, and it will be hard to find the OFF switch. The DO and DON’TS of caring for someone living with dementia grows daily.

Start your own list then share it with us so we can learn. It makes me chuckle when I read it and wonder, why did it take you so long to learn that.

February 27, 2017

Hazel wants a hardcopy of my blog, My Thoughts on Dementia so I started to format it into a PDF file and that sucker is over 478 pages long. We are not talking about a short story but a novel.

I’ve tried to document my life since I was diagnosed with dementia never thinking it would become a novel. Each day I try to record my thoughts and the way I feel. Most days are good but there are days that may make you cry.

I think it is a good legacy to leave behind to remind my family what living with dementia was like, back in the day there was such a thing as dementia.

February 27, 2017

Each year I try to improve my message that there is Life Beyond Your Diagnosis and this year is no different. Looking out the window is different than seeing what is out there. This is what drove me to develop a webcast that I will call, Welcome To My World with Harry Urban.

I want a program that doesn’t look at dementia through medical terms and statistics but through the eyes of those living with dementia. I want to discuss the hobbies we have and the things we do living with dementia. I intend to prove that we can live a worthwhile life with our disease.

I aim to give you a glimpse into my world without making you afraid of the world we are walking in. No medical or professional people will be speaking, only those that struggle with dementia and finding ways to overcome their hardships will be guest on the show.

I hope you can join me and walk with me. Once I get my guests lined up, I will let you know when we go live. If you would like to be a guest on the show, let me know.

February 26, 2017

I wish I were able to put more emotions into my writings. I tell you what living with dementia is like but I can’t seem to capture the feelings we have. I want the hairs on your arms to stand up and the warmth to flow over your body when I write about my life with Alzheimer’s.

I don’t want you to feel the pain but share the joy that I have. Dementia gets a bad wrap because of doom and gloom but I also gained so many lessons in life because of this.

I would never have reached into my soul and got rid of the hatred I felt toward life if it was because of my dementia. You are forced to face those fears and walk away from them. It appears you lost so much but I can’t explain the feeling of being set free to be just me.

February 25, 2017

Today we had some of the nastiest winter storms, that we ever had. Torrential rains and winds over 60 mph along with tornado warnings. This is February, what in the world is going on. This was one of those fast moving storms and my neighborhood was spared any major damage but not other parts of the county

Afterwards I wondered if I was prepared for a major natural disaster if it would have occurred. Hazel was at work and I was alone at home. I was sitting on my bench outside and Jade became restless and wanted to go inside.

Shortly after the wind picked up and I turned on the tv to check on the weather and found the local station broadcasting a weather special and warning about possible tornadoes and what to do if one would occur.

It made me stop and think, I have dementia, am I prepared for a natural disaster?

February 25, 2017

Inner peace, don’t even talk to me about that. I have dementia and God did nothing to prevent it. Ugh. I hear this so often that I pray for guidance. I have a powerful message I like to deliver but first need to break through the walls and find out what is really troubling them.

It is so easy for us to blame God, because heavens. we do not want to look at ourselves and the attitude we carry. I don’t won’t to work on changing my attitude so I’ll just push the responsible onto someone else.

It doesn’t hurt as much if I can blame someone else. Unfortunately, the path you are on will not carry you through inner peace. It will lead you to the same destination, but don’t expect much happiness along the way.

Once you modify your attitude, you will be willing to listen to my message on inner peace and decide for yourself, who is to blame for your problrms.

February 25, 2017

I wish upon a star that we could all be happy. I would give anything to make you smile and better yet, be able to give you Hope with your disease. I have been given the opportunity to show you the light to a better life, and it is up to you if you want to walk with me or not.

Be warned I will not allow pity parties or feeling sorry for yourself. We have been dealt a hand that is so hard to win, but with a poker face, we can bluff our way through life.

We will learn ways to not only conquer our fears but laugh even though we are living with dementia. Together we will be stronger than anything our disease throws at us. Disbelievers in the magic of living a better life will be left along the roadside.

February 24, 2017

I’ve been screaming for years that early detection for dementia is the best policy. Many don’t want to know for reasons known only to them. The degeneration of your brain continues whether you want to know or not.

Then the day comes they finally get tested and find out they are in their late stages. Their cogitative abilities suggest they should be placed in a care facility and they wait to become a statistic.

Sounds cruel and it is. Thousands allow their dementia to control their lives and that makes me so angry. They look at me and others like me, with anger in their eyes, because they see us as the lucky ones.

We fought our demons for years and found those secrets to continue to live. I am trying to curb my anger and show tolerance towards those that are in denial. All bets are off when you criticize me for living with my disease and being happy.

I am well aware that each of us will lose the battle, and that includes me, but I want to know before I can’t even try. If I can reach that one person, then the many people that message me with venom in their voice will make it worth it. When I reach those pearly gates, I will be able to say that I might have saved another life from a short trip into misery.

February 24, 2017

Picture this. I’m sitting on my bench, with Jade laying by my feet with a hunk of basswood and carving a wood sculpture for a friend of Hazel’s. I should mention that it is 75 degrees heading toward 78.

I have my ear plugs in, listening to Conway Twitty and singing my heart away. Did I die and go to heaven, without me knowing, or is this peace living with dementia?

Today I had a doctor appointment and we discussed the longevity I am having with Alzheimer’s and both of us agreed it is not the medication I am taking, but the life style I choose to live. The medication may be helping with the symptoms, but how I am dealing with it is adding the years to the longevity

.

February 24, 2017

Does it take good eye sight to see the changing of the seasons or a wild imagination to view the wonders. Would you like to talk politics or what we are going to do to make our lives better living with dementia?

Better yet, do you know how to relax? Automatically you will say yes. But do you really? We all have our perception of what relaxation is from taking a Calgon bubble bath to having our phone not ring for one hour.

Happiness is different from person to person and we all see it from different eyes. Whatever happiness means to you, enjoy it while you can.

February 23, 2017

I have a tooth ache, no you don’t, you have false teeth. Then my head hurts, stop it, no it doesn’t. It’s hard to have a pity party when you are living with an experience care partner.

Especially with one that took the time to know and understand me. They see through me like a flimsy nightgown. They don’t get rattled by my antics and take anything I do or say in stride.

It is so hard for me to shock and awe them, they have their care duties in hand and are very good at what they do. Bless everyone that is caring for someone with dementia, we rarely get the opportunity to thank you.

February 23, 2017

How do I know so much about living with dementia? The answer is simple, I open my window and look out. This is where I go to work every day of the year and report what I see.

I never had any training, I just started walking around and telling you what I see. I like to think of myself as the man on the streets not telling you what someone taught me, but what I see and feel.

There is no lying about what I see, or faking what I feel, because anyone that is outside with me share the same views. We don’t need to rely on facts and statistics, we only need to walk up to someone and ask, how are you doing.

February 22, 2017

Slipping from reality, is it as bad as what you think? I have dementia and you look at me with pity in your eyes. You watch me every day fading into the world you don’t understand, thinking the worst, yet not knowing where I went.

You don’t know where I am slipping away to, but all the books and articles you read say, it is bad. My face may say I am no longer there and you may be partially correct. I am no longer in your world, but a world of dementia.

You were told this world is horrible, but you never been there so you don’t really know for sure. Is it possible we are slipping into our memories of the past and feel safer than we ever felt.

Do we spend time with people you will never “see” until you start to slip into your own world of dementia? Are family members that died years before, sitting beside us telling us everything will be ok.

If you ask me if slipping from reality is bad, maybe on one of those rare occasions, I will tell you the people I saw, the places I went and the adventures I am living.

February 22, 2017

My friend Norm Mac wrote a post and said, “Be careful what you say in front of someone living with dementia”. We hear and understand more than you might realize.

We understand you wrote us off by the tone of your voice. You may say something that would better, if we never heard it, and afterwards you may wonder why we became distant to you.

Never assume we are like that person you think we should be. We are alive with feelings and need to be treated with respect and dignity.

February 22, 2017

Damn, I tripped on the sidewalk and almost fell down. I look down and don’t see anything that may have tripped me. This isn’t the first time it happen and I’m beginning to think it might be me.

Is my dementia beginning to cause my walking problems or is my diabetes the cause? Only my doctor will be able to tell me but either way, I need to take precautions to prevent me from falling.

Those throw rugs that are so convenient may have to go and I may have to install grab bars in the bathroom. I may have to use a can to help with my balance and avoid stairs them may be too steep for me. It may be time to make my home dementia friendly and safe.

I have done all of these things, and I’m constantly looking for those little things that may trip me up.

February 22, 2017

I love hanging around people that have learnt the secret to living a good life. There is no pretending to be someone they are not, what you see is what they have to offer.

Of course you know I’m talking about someone living with dementia. There is no need to try to impress you or lie to you, there is nothing to gain by doing that. They have lived a hard life and recognize BS when they hear it, but also the patience to ignore it.

You will become closest of friends with them and enjoy every minute you spend with them. The funny thing about this is, you may never get the opportunity to meet them in person, but they found a piece of your heart.

February 21, 2017

I am always looking for projects, related to woodworking, that someone progressing with Alzheimer’s can do safely. Most of the things I can do require little use of power tolls and maybe some supervision to remind me not to cut my fingers off but they can be done by someone living in the moderate stage of dementia.

For years I have been trying to find a way that someone with dementia can take a picture and transfer it to wood. Yesterday I did it and plan to make a video showing you how to do it.

After I finish it to preserve the image, I will post it and show you that even living with dementia, we can still do some amazing things.

February 21, 2017

You can never bring back all those years you wasted either being in denial or not wanting to be tested for some form of dementia. Dementia doesn’t care, it will progress until you decide that you have a problem.

This is when I hear that their loved ones have been diagnosed and are already in their late stages. This didn’t happen overnight, it took many years of you denying there is a problem.

No one wants the diagnosis of dementia, but the earlier you get it, the more productive life you can have.

February 20, 2017

I’m feeling nostalgic today, I sure could eat a Christmas cookie. Maybe one with those sprinkle things on top. Just one would do because I’m not much of a cookie eater. Hazel laughs at me until I remind her of her crazy thriving she had when she was pregnant.

Now I need to explain, no, I am not pregnant just trying to explain how someone with dementia might think. My short-term memory will soon erase my Christmas cookie desire and be replaced with something else I probably will not get, like a chainsaw.

February 20, 2017

A story is being told every time your loved one, living with dementia, looks at you and recognizes you. You may not see or understand the raw emotion of love looking back at you.

You rang their bell and woke them from the void they were living in and brought them back to life. You will never understand the journey they had to take because to you, it happened all of a sudden.

To them they may see more than a thousand pictures of you go through their mind before they found one they recognized. When they do, you are filled with joy because they know and recognize you.

The real story is the journey that was taken to recognize you. Many years may have been traveled in that one moment.

February 20, 2017

Even living with dementia, you got this. You may have a sister that lives miles away, or friends you may never meet, they always find a way to make you feel loved and important to them.

My future may be bleak to you, but to me, my here and now is wonderful. Good morning everyone, don’t get too busy to see the sunshine today. It contains a hidden message for you.

February 19, 2017

I have a unique relationship with God. I say why me and he answers, knock it off, get off your butt and give at least one person HOPE and a meaning to live. I call it tough love but HE calls it my passion.

When you are living with dementia, you tend to feel sorry for yourself and not worry about others. Not my God, He has taught me that if I help others, I will not realize I have problems, and believe me, He is right.

It has worked for me and proof is the many years I have enjoyed since I was diagnosis with dementia, of the Alzheimer’s type.

February 19, 2017

Walk a mile in my shoes, better yet, walk a mile in your own. You don’t need to walk a mile but you must do some form of exercising to live a healthy life. Sitting in your chair all day isn’t going to do it. You need to get the blood pumping and the juices flowing.

I take a walk around my yard and check out the tress blooming and what flowers are beginning to wake up. You don’t have to join a gym or start pumping iron to get healthy. You only need to get out of the, I’m only waiting around to die mode, and begin some form of exercise program, that suits you

The trick is to not only exercise your body but also your brain. Find a hobby that interests you, maybe its completing puzzles, anything that will tell your body, I’m not getting older.

February 18, 2017

Thank you, God, for such a beautiful day. Last fall I said if I make it through February, I'll be ok. Living with dementia is bad enough but add the dreary days of winter, toward the of February, cabin fever, depression and having so much time to think about what is happening to me begins to take its toll.

This year I planned ahead by forcing myself to get back into my woodworking and learn wood carving. This gave me enough “me” time to generate the strength to follow my dream of dementia awareness. Being able to follow my dream and passion, I was given a reason to live.

I can’t deny winter was hard on me but that is behind me and I’m looking toward the future and the upcoming baseball season. This year my message of HOPE and life beyond your diagnosis, will be stronger than ever.

There will be times when people disagree with me and maybe even get downright angry with me, but let me tell you one thing, I love anniversaries, especially when I celebrate living a productive life with Alzheimer’s. January, I celebrated 13 years with the diagnosis of Dementia, of the Alzheimer’s type, so you can disagree with what I say but it seems to be working for me.

February 18, 2017

I’m trying to gather up all my problems, put them in a bag, and sit them on the curb to be picked up by the trash collector. I call it my spring cleaning. It’s amazing how many frustrations you collect over the winter when you are living with dementia.

It is good every now and then to not try to solve them, but simply just throw them away. You say it’s not that easy, but it is. Most people are hoarders, they save things that they have no use for because they are theirs. Same goes with frustrations and problems, they come with an expiration date but we never seem to realize when it is time to get rid of them.

February 18, 2017

It doesn’t take much for me to get excited in the morning. The first thing I do each day is grab the newspaper, turn to the back page and see what the weather will be like. I almost fell out of my chair when I saw they predicted temperatures to be in the low 60’s most of the week.

Why in the world would this get an old guy living with dementia excited, it’s because he can put on a jacket and sit on his bench outside verses sitting on his chair looking out the windows.

Little things that you can’t buy makes me the happiest. There is no medication that relaxes me more than sitting under my tree watching the birds or soaking in the warm rays of upcoming spring.

February 17, 2017

Tulips and daffodils are breaking ground telling me to shake the winter blues, spring is coming. Now I know we have several months before spring is here but they started spring training and that is good enough for me.

I can’t wait until I can yell, damn mosquitos. I’m even looking forward to mowing the grass. I don’t drive anymore but I can still run over things on my lawn tractor and annoy my neighbors.

Sitting outside on my bench, making faces at the squirrels, and seeing the clouds change shapes makes a kid out of me, worse than Alzheimer’s. This year I just might take off my shoes and socks and walk in the grass. When I see, flowers popping up for the first time, I seem to go crazy.

February 17, 2017

It is true, I have Alzheimer’s in all its glory. I experience all the hardships and fears that go along with it and watch the tears flow when people that love me, watch my decline. Like everyone like me, I have grave concerns toward my future but I also know my faith will carry me.

Why in the world then am I so damn happy with my life. Is it because I am married to the love of my life and surrounded by friends that will unconditionally support me and ensure I know that I will never walk alone.

Maybe it is my passion for life and being able to do the work that means the most to me. It could also be the lessons that dementia has taught me, bringing me to the very edge of life and forcing me to find a way to crawl back. I think it is a bright sunny day, with my dog Jade by my side, watching the birds and those pesky squirrels eating out of my bird feeders that contributes living a happy life.

February 17, 2017

When you wake up in the morning and look at the person in the mirror, does that person look like the person you want to be. I’m not talking about how dishevel you may look or your physical attractions, but is there a sparkle in your eyes and a smile on your face.

Can you see a determination that says, I can do whatever I attempt to do? More importantly, is this a person I would like to spend time with. If this is not the person looking back at you, there is a message there.

February 16, 2017

Show me a mountain and I will try to climb it. Give me a challenge and help me stop thinking about living with dementia and what my future will be like. I need to push people to find ways to live a better life with dementia and stop thinking about myself.

I believe people decline at a faster rate after they lose the intensity of their passion and do too much thinking of the things they lost. We all have a tendency to slow down but we need to keep our minds active with things we love to do.

February 16, 2017

My new workbench is built, my dust collection is all hooked up and now I am dying to build something. problem is, my shop is so clean, I don’t want to get it dirty. I believe by the time I wake up tomorrow, my phobia of keeping my shop clean will pass.

I need to work through my nightmares and doing something creative is going to help. I’ve had too much free time to think about the things I can no longer do so I need to maybe turn something and surprise myself that I was able to still do it but more importantly, that I felt good about completing it.

February 16, 2017

I write my best posts while lying in bed but you never get to read them. Blame it on my short-term memory because when I get to sit in front of my computer, I cannot remember what I wanted to write.

I can’t remember something I thought about ½ hour ago, and gives me a clearer picture what lies ahead of me. It’s not like losing your car keys and stumble onto them later, that thought is gone like it never happen.

The problem is, I remember the thought but not the words. I remember having a post that I think would be great to write but not what it is.

February 15, 2017

Imagine all the people living without HOPE. One day is like the next without a reason to live. They have no dreams or anybody that cares for them. They are just putting in their time until they get to clock out.

What can we do to bring Hope back into their lives? Money will not do it or that magical bullet to cure their disease. We tend to write them off because we think they can’t be helped.

We want to do things that will bring a return back to us and can find very little time to spend with those without Hope. That will change with or without your help. The North Star is shiny brightly and our prayers are being answered.

A medical breakthrough was not announced nor did the government decide that dementia was worth funding. Through the help of so many living with dementia or those affected by it, we are getting people involved.

February 15, 2017

I am planning a big day for today. I am going to build a new workbench so I can attach my duct collector and remove the saw dust from my shop. Don’t worry I didn’t turn into a clean freak, but I am trying to make Hazel happy.

She has this crazy idea that my woodworking tracks dirt all through the house. I have no idea why she thinks that because I tidy up almost every time that I finish working on something.

My shop will be safer and easier for me to work in. What has me so excited is that I will now have a separate bench to do my wood carving on. The good news is that I can build my bench without the use of power tools, only hand tools. Now if I can only persuade my Alzheimer’s to leave me alone today.

February 14, 2017

Many women and actors wear makeup to hide blemishes and imperfections from the public. We living with dementia also wear makeup to hide the depression that could lead to suicide or maybe it comes in forms of talent which would never have you believe that we suffer from dementia.

We wear a smile to make you laugh, or maybe sing to distract you from seeing the pain we carry. Just like people who wear makeup to hide from you the things they don’t want you to see or maybe improve their image, we living with dementia use makeup to protect ourselves.

February 13, 2017

You will never hear me complain that I have been living with Alzheimer’s for over 13 years. I’m nobody special, I have all the fears of uncertainly and Hazel can tell you about my nightmares but my life is full.

I can still advocate for a better life for people living with any form of dementia and pursue my hobby of woodworking. You need to remember that the things I make were made from someone living with dementia.

They made not be square or straight but they were made the way I see them. When my doctor asks me to draw a clock, I can tell you it would not be perfect to you, but when I look at it, it looks good to me.

I have learned that when you make something, it doesn’t need to be perfect, it only has to represent you.

February 13, 2017

Silence takes over, those awkward moments after informing someone that you were diagnosed with some form of dementia. Most have no idea what to say and the wise ones say nothing,

Many times, you are told everything will be ok and not to worry about it. Duh, don’t they understand that you just told them you were given what you assume to be a death sentence and they reply, don’t worry about it.

We want people to automatically recognize the feeling we are going through, but they need time to digest what you told them. It’s not like they don’t care or are worried as much as you are, at the moment, they just don’t understand what you told them.

February 12, 2017

When you mention, The Guiding Light, most people think of a tv show of that name. Not me, it represents what has control over my life. I rarely post anything on a religious nature because of the different opinions on religion.

My religion is strong but very private to me. I turn to it in the most difficult of times and it has never let me down. I may not get the response I wanted, but always the one I need to hear.

As we get older, it is said that we tend to walk away from the church, but I wonder if the church is walking away from us. Visit any care facility and see if their religious needs are being made, then decide for yourself.

February 11, 2017

I miss how everything was. We used to stroll around the neighborhood and laugh at the silliest things. We were carefree and never left life get us down. Then dementia came into our lives and that all changed. I can’t remember everything that changed, but it seems our lives are so different now.

We seem to be under so much stress and I don’t understand why. When you are living with dementia, you know your world is changing but don’t know if it is good or bad. We mimic the people caring for us and copy all their emotions.

Next time I am being difficult, ask yourself, is he/she pretending to be me.

February 11, 2017

I got up early today and Hazel drove me to the lumber yard to pick up the wood that I ordered before she had to go to work. I got a beautiful piece of basswood that measured 4x8x 8 feet long, which I will cut into smaller pieces for my wood carving projects.

I also got several other pieces for wood turning but I want to learn how to carve, decorative wood spoons after I finish what I am working on now. My woodworking carries me over many of the bumps I hit while living with dementia.

Being an advocate for raising dementia awareness and living with Alzheimer’s, could consume all my time but I won’t allow it. I need “me” time, I need to do things outside of the dementia world to give me the strength to do the work I need to be doing.

This is a lesson we all need to learn, especially our care partners. Don’t let the world of dementia swallow you up and prevent you from living your life.

February 10, 2017

Why can’t my dreams every come true? Are they so massive or maybe not realistic? I sometimes I believe that they were just not to be until there is a hint that keeps me dreaming.

It doesn’t hurt to dream as long as you realizing that dreaming them may not make them happen. You sometimes need to step outside of you dream and work hard to bring them to life.

February 10, 2017

So many of my friends living across the country, whom I love very dearly, are standing on the edge of a very high cliff, looking at the murky ground below and wondering. Your first instinct is to grab them and pull them back, but most times they will return looking for their answers.

I think the better approach is to talk to them and help them understand that they do not belong to be standing there in the first place, wondering. They believe that no one cares or would miss them, but we do, we just do a poor job in letting them know.

Offer your hand, not to pull them back, but to stand beside them and help them work through their problems. There are times that the best thing you can do is not offer advice, but just listen.

February 9, 2017

I was so excited when the Fedex truck backed into my driveway because I knew my dust collector for my woodshop arrived. I opened the big box and was happy because I didn’t see to many pieces that had to be put together.

Even when I opened the “how to put this darn thing together” manual, I didn’t get too excited. I did have to sit down when I next pulled out this humongous bag of nuts and bolts.

How in the world is someone living with dementia going to figure out how to put this together when his wife is working until 9:00 tonight? I figure I will do my best and let my son-in-law fix all my mistakes when he and Patty visits on Sunday.

February 9, 2017

I’m glad you’re sorry now. We all say that after someone tells us they are sorry for hurting us. Apologies are nice, but why do people have to hurt someone before they realize they may have been wrong.

As I get older, I realize that I have no idea why some people do the things they do. If we would only stop and think before we talk, we may not find yourself in the position to apologize.

We always tell caregivers to stop and let the person with dementia process what we said, but maybe we should stop and process what we want to say.

February 9, 2017

Only you can make this world seem right. These were the opening words to a song so many years ago, interesting enough, they are so true day. If we want a change in our life, we need to make that change.

That goes along with being happy or finding that meaning in life. It would be great if life dumped a truck load of happiness on us each day, but we all know that doesn’t happen.

We tend to blame others or the situation we may be in, without regard to the fact that we choose to do nothing about it. Remember, only you can make this world seem right.

February 8, 2017

I visit a care facility and see someone sitting in a chair, lost in their own world. Do I invade their privacy or walk away? I usually sit down beside them and try to enter into their world.

I may not need to say a word before we begin to communicate. It may be a glance or a jester indicating how thankful they are to have someone take the time to be with them.

At that point the door was opened to allow me to enter. I may say good morning then allow them to respond if they want. You can never force a conversation but you can allow it just to happen.

February 8, 2017

I’m sitting here listening to Kenny G’s Breathless cd, and transporting to the most pleasant places I could ever find myself. I lose myself in music especially of the relaxing kind.

I try to take time every morning and enjoy a cup of coffee while freeing my mind from any experiences I may have had during the night. I think positive thoughts and never let my hardships enter my mind.

If I start the day properly, it usually dictates how the remaining portion of the day will go and I can avoid those nasty bumps in the road. I may be weird but my life is built around a routine that I try to follow every day.

February 7, 2017

I’m asked, you are always so cheerful, but what is it like in the pits of dementia. I don’t like to talk about it because it is depressing not only for you but for me. Some words are best left unsaid, but how will you ever know unless we tell you?

It is a tricky balance from informing you and reliving the hell we go through. It is hard for you to imagine what we are telling you and sometimes you may think it is just our dementia playing tricks on us.

Very few of us will tell you about the dark side because it is so vivid to us and we get lost in the darkness when we are telling you our story. You may never know, and be better off not knowing.

February 6, 2017

Have you ever noticed that when you talk about how bad you feel, you never seem to get better? It’s true, those negative thoughts stick to you like glue, and it seems like you can never shake those blues.

It seems like some days I almost need to kill myself to be happy. But it is worth the effort. How do you break the mold of feeling sorry for yourself, and I don’t think the experts have a clue?

Some days it is hard to try to think positive thoughts because of the darkness. That is when you decide whether you want to or not. Why is it so hard to see the beauty around you, just open your eyes and your heart, it is always there for you.

February 5, 2017

I wish I didn’t have Alzheimer’s and need to live the life I do. I didn’t get a choice so it is up to me do something about it. I try to stay positive but there are days when it is so hard to do.

I could give in and accept, that it is what it is, or I can fight like hell and turn this new life into one of my liking. I will give you a minute to think about it, then you tell me which way you believe I choose. I am in my 14th year of my diagnosis of dementia, of the Alzheimer’s type and loving every minute of it, not my disease, but my life.

February 5, 2017

Stop it, just stop it, stop asking me the same questions over and over again. Is this a person living with dementia of the person caring for them that is asking the question? It may mean something different but maybe not.

Our care partners may lose patience after hearing the same question asked repeatedly. What time is it, are we soon there or I what to go home may get a little tiresome at times but how about, are you ok, do you have a headache or what can I do to help you.

We react differently, both may be causing anxiety without realizing it.

February 5, 2017

Have you ever noticed when you look at a picture with someone living with dementia, often they are holding their heads? You may jump to the conclusion that they have a headache, but most doctors will tell you that headaches are not caused by dementia.

Why is it then that they all seem to be holding their heads? When you begin to understand body language, you realize they are not reflecting a headache but are trying to tell you of their emotional despair.

We are trying to tell you what is troubling us, but often it is misunderstood as something completely different. In your studies to learn about dementia, take the time to learn what body language is telling you.

February 4, 2017

Honky tonk or player piano music, which ever you want to call it, is one of my favorite to listen to. Don’t ask me how I get both feet and hands tapping at the same time, but it is amazing.

I can picture myself sitting at a piano, with arm bans on, a smile on my face a country mile long, just playing my heart out. Several things are wrong with this vision, first being that I can’t play the piano but I could get around that if I had one of those that played by themselves, I could sit there and pretend it was me playing.

I could still work up a smile and guarantee that my hands and feet would be bopping up and down. It would be great.

February 3, 2017

I looked in the mirror and hardly knew the person looking back at me. What in the world happen to you and how did it happen? We living with dementia, remember our friends and family the way they once looked. Time has no meaning to us, and we don’t realize that someone ages.

Then reality does a fast forward and we don’t recognize the person we are looking at. Our eyes see this person but our brain is battling reality.

February 3, 2017

Life is no bowl of cherries, especially if you are living with dementia. It’s not because I forget things or I’m entering another part of my life. Is it because I’m adding years to my life and I’m no longer a kid.

What am I talking about, my life is a great big bowl of cherries? I found peace in my life and accepted the fact that someday I will die. I found that I can laugh and do new interesting things.

I don’t mean to minimize the hardships we face. But why am I able to say, my life is great living with dementia. Would I be better off if I was never diagnosed with Alzheimer’s, and I would have to ask , if I wasn’t, would I have looked and found what is important to me?

February 3, 2017

I wake up in a sweat and wonder, where am I or maybe where was I would be better. I know the people but not the places. It seems I am lost in a different world.

I walk around and see people I remember but everything looks so different. I have never been here before and nothing looks familial. I have no reference to time and don’t know where I am going.

It is not frightening nor do I feel like I am in any danger, I am just trying to find myself. I feel a gentle hand touching me and telling me it is time to wake up.

February 2, 2017

We are officially past 1/3 of the three hardest months in the year for me. We are not out of the woods yet but the dreary days of winter is losing its grip on me and I’m beginning to feel more alive.

After the Christmas Holidays, I usually fall into a depression state until the first crocus sprouts. I begin to think I am smothering by having to stay indoors, and I think, OMG, I have dementia.

This year I joined several dementia projects which is keeping my mind active and expanding my woodworking hobby that constantly reminds me how good it is to be alive. I removed myself from negative people and things that upset me which means I adapted my life so I can live with dementia.

February 1, 2017

Another attempt at wood carving and hopefully I am improving. I’m using scrape wood I have laying around the shop and once I gather more confidence in my new skill and practice more on my cuts, I will finally tackle a project that will make me happy.

I am my worst critic when it comes to my woodworking because I think I could always do better and then I try harder. It’s not a bad thing to push myself to improve on a hobby I simply love and enjoy.

February 1, 2017

You say, don’t do that because ….. and I say but I can. This is a conversation we have in our house all the time. Hazel, my care partner is only trying to keep me safe and I may never realize the danger I may be putting myself into.

If it is a safety concern, she will win every time, but if it is only a concern for her, I have a good chance of winning. Hazel allows me to fail, many times with tears in her eyes, but she also gives me the opportunity to succeed.

I love her because she has faith in me, she is beside me picking up the pieces when I fail, but also standing beside me when I climb a mountain. Being someone’s care partner is not meant for everyone, you need to be someone special, and you are.

February 1, 2017

The window of opportunity is slowly closing and I realize it. I need to push myself to complete what I need to do before that window closes and engulfs me in darkness.

I’m not worried about the day when that happens, I just need to ensure that I don’t get sidetracked by Alzheimer’s and stay focused on my dream. Having a passion and dreams will help you overcome the bumps in the road when you are living with dementia.

I want to live and follow my dreams, and that is what is keeping me alive. Don’t give into the temptations of giving up, that by far is the easiest thing to do, and you never know what you may be able to occomplish.

January 31, 2017

Today I attended my first meeting as a committee member for the World Class Memory Center that will be built at Willow Valley in Pennsylvania. Being given the opportunity to help make this center a reality, is not only an honor, but a chance for using my voice to represent the dementia community.

After the meeting, I thought, this committee really understand the needs for people living with dementia and will not only benefit us locally, but worldwide. I am so pumped up and anxious to report the progress we are making.

Very few details are available to release but when they are, you will be excited as I am.

January 31, 2017

Teaching the experts is the hardest thing someone living with dementia is faced to do. We have cognitive problems and the experts may have several degrees, which makes them think they are more qualified to talk about our concerns. Being book smart does not mean you understand the emotional side of dementia.

So many times, we are told that the problems we tell them about, have nothing to do with our dementia. When we ask them why they say that, they never read anything that would connect them.

This is a red flag that is saying, this doctor is not trying to understand you and perhaps someone else would give you better treatment. Don’t be afraid to ask questions and demand answers the you understand.

January 30, 2017

If you stomp on my foot, I would yell, but if you break my heart or hurt my feelings, you may never know. I would hide it from you and cry in silence. Two different types of pain, one is physical and the other emotional.

Next time you ask your loved one living with dementia if they hurt, are you referring to physical or emotional pain?

January 30, 2017

If I was a cowboy, I would ride off into the sunset and forget I have Alzheimer’s. I’m not so, I’m stuck living with it. Do I live in denial and pretend I don’t have it or maybe hide my diagnosis in hopes no one will find out?

Should I pretend everything is ok, so no one will worry about me or maybe laugh a lot so no one knows how I feel. So many choices we can make but the biggest one wasn’t mentioned.

I could accept my diagnosis and get on with my life. Find a purpose in my life and start enjoying every day and not worry about the unknown. That is the best choice of all, but the hardest one to do.

January 30, 2017

When I’m talking to someone living with dementia. I ask them what their main concern is, and without a doubt they reply, I am so lonely. Not that I wish there was a cure, but simply, I am so lonely.

Why is it we spend so much time and energy in trying to find that magical cure and we miss what really concerns people living with dementia. Should we be ashamed of ourselves because we are the cause of one of the main concerns of the people we love and knowingly do nothing about it.

We are too busy in our lives to spend time with someone living with dementia, but pride ourselves because we walk for a cure. Maybe we don’t want to get our hands dirty and justify it by raising funds.

So many sons, daughters and family members abandon the very people that gave birth to them because they are too busy or just don’t want to be around them causing them to say that their main concern is, they are lonely.

January 29, 2017

I read in our local newspaper about a local woman celebrating her 110-year birthday. When asked what her secret was to her longevity, she contributed to keeping her sense of humor.

She looks wonderful with a million dollar smile and a sparkle in her eyes that I wish I had. Maybe it is due to good genes or so many other things, but with the smile she shown, I would guess she hit the nail on the head. Her sense of humor is relieving all the stress in her life and we could all learn a lesson from her.

January 29, 2017

I can’t stand on top of that mountain, gloating how I got there, it is time to climb another one with a little my difficulty. I got my feet wet with my woodcarving and got the hang of the basics but now it is time to try something a little more challenging and with more details.

My next project is for a family friend that whined enough to bring me too tears and give in. That may be stretching the truth just a tad, but I did find something that she would like and would be a lot of fun to make.

It may take a week and a box of band aids, but I’ll post a picture when I’m done. Don’t be afraid to push yourself if you are living with dementia, it may hurt but it is so rewarding.

January 28, 2017

My first two attempts at woodcarving. I am so thrilled i did not have to give up my love of woodworking because i have Alzheimer's. Never ever give into dementia.

January 28, 2017

I’m sitting here with a pile of wood shaving at my feet, thinking how great life is. I have no regrets that Alzheimer’s forced me into a new life because it is one of my choosing.

I’m pushing myself to learn new skills and finding a person I never knew was there. If you told me 15 years ago, I would be doing the things I am doing today, I would have told you that you are crazy.

I don’t want to give into my Alzheimer’s because it will grab me and sweep me away. Don’t misunderstand, I still have the nightmares, the anxiety of living with dementia and the struggles that everyone else has, but I also have the greatest love of life.

I will get off the coach, even though I don’t want to, and exercise my brain and my body to get the type of life I want. Will I lose my battle with Alzheimer’s and the answer is yes, but until the day comes, nothing will stop me?

January 27, 2017

I’m taking up a new hobby which is wood carving. I never tried this before and found it to be so different then what I am used to doing. I absolutely love it and found it to be so relaxing.

I nicked my finger twice so far, not bad enough to draw blood but it did remind me that I must be careful and pay more attention to what I am doing. I am working on two different projects and I’m so excited to finish them and show you.

You say I have dementia, then how am I capable to learn something new and find another reason to enjoy my life. The answer is easy, I forget I have Alzheimer’s.

January 26, 2017

Nobody answers when I call your name brings tears to my eyes every time I hear it. I hear it from people that lost a loved one due to dementia and are grieving with their loss.

There are no words to take away their suffering, we can only listen and support them during their grieving period and make them realize they are not alone. Support must not end after death, then is when your help is needed more then ever.

January 26, 2017

Do you lose that loving feeling when you have dementia, or do you just lose the ability to show it? If you do lose it, will it ever return? Living with dementia is so scary with all these thoughts running through your mind.

January 26, 2017

I often reach into the core of my soul and wonder if I am doing enough to help others? I am past the point in my life that I have the need to promote myself, looking for a better life.

I am poor by some standards, but I have something so many will never achieve, and that is an inner peace knowing that I found the secret to look beyond myself.

I am no longer first in my life and wish to continue the remaining portion of my life by helping others up. Alzheimer’s has taught me so many hard lessons in life which I am thankful for. When my time comes, I will be able to rest in peace knowing I gave my all.

January 26, 2017

I have a little dirty story to share with you today. I cleaned up my shop and even swept up in the corners. I filled almost two bags worth of wood shaving and saw dust from the past several months of woodworking.

I had some help with Mother Nature washing the outside of the windows and have to admit it is clean enough to park the car in it. I do this every now and then when Hazel puts the heat on me, but honestly. I can’t wait to get it dirty again.

January 25, 2017

I asked myself today if the people around me are Angels. Were they sent down from Heaven to help me carry through with my passions? I am able to accomplish things that people living in their 14th year of dementia should not be able to do.

There are so many times I want to give up but then my phone rings or I get a private message from someone I never met and makes me realize, I can’t give up. If you don’t believe in Angels then tell me, why am I able to walk through the dark side of dementia and pull someone out.

January 25, 2017

When you are caring for someone living with dementia, are you bringing HOPE back into their life or just taking care of their daily needs? Do you talk to them and get to know this new person? You may know the old person very well but unfortunately that person is being left behind and someone new is being born.

We often take for granted we know and understand the person, only to find out that this person we are caring for is so different. The person we knew may have been kind and caring but this person is not.

Something happen and are you trying to figure out what it is. Finding out what the problem is may return a part of the old person you love.

January 24, 2017

Some experts watch us do something and then tells everyone why we did it, never factoring in our dementia thoughts and could be so wrong in what they are saying.

We have no idea why we do some things, so how could you possibly know? I hear people say that their loved one did something because they were bored. Maybe, but most times they have no idea why they did it.

January 24, 2017

I believe our care partners live on a stricter schedule then us living with dementia. The wash and ironing need to be done on certain days and the house needs to be vacuum and dusted before company come. Everything needs to be perfect and spotless.

Not me, if it is good enough for me, then it should be for you to. Your room looks like a pig sty and I look around remembering what a pig sty looked like on the farm, and my room looks nothing like that.

I guess my view on life is so different than yours and my expectations not as high. Maybe living with dementia is not so bad after all, depends on which side of the fence you are sitting on.

January 23, 2017

What matters to me, and if I were to answer honestly, I would say, not much. I say this because I no longer understand the world around me. Politics don’t interest me because I can’t handle all the angry words.

A major storm that is heading my way doesn’t interest me because I feel warm and safe in my home. I have few worries because I am fortunate enough to have people around me to handle them.

The main thing that matters to me is dementia and what it is doing to the people I love, but there is little I can do about it. My family matters to me and I worry what I am doing to them living with Alzheimer’s. My life is simple and only fate is directing me.

January 22, 2017

I walk out my front door and everything looks different, I turn around and the front door is not there, in fact I don’t see anything I recognize. I should realize I am dreaming because I have this dream so often, but I don’t.

I should panic but I don’t, I just start to walk hoping I will see something that I would know. I never do but maybe just a little further and I will see someone to ask for help.

It seems I can never catch up to anybody and I realize that I’m all alone and lost. I start to get scared and paranoid about my surroundings, and think maybe if I hide no one will get me before I figure out what to do.

I think I hear someone calling my name but I’m too afraid to get out of my hiding place and see. I have no sense of time or realize how cold I am. I am so tired I think I’ll just lay down for a minute to catch my breath.

Wandering is a serious problem for someone living with dementia. We have no idea that we are doing it but many die from it each year.

January 22, 2017

Every woodworking project I do gets more ambitious and is pushing me into thinking there is nothing I can’t do if I put my heart into it. I’m working on a table stand that I had in my bucket list for a long time.

This project is going beyond the candle holders I love to make and making me think of different design patterns I wanted to use. To think I would ever again build even a simple piece of furniture was beyond my wildest of dreams.

I want everyone to feel the high I am riding and stop letting dementia dictate how you feel. You can override your brain into thinking you are so much better then you should be and accomplish things that will amaze you and everyone around you.

January 21, 2017

I finally got asked one of the questions I was dreading that someone living with dementia would ask me, and that was, how do I talk to my family about end of life decisions. Fortunately, I had some literature explaining what to do but later thought that I avoided an uncomfortable conversation like most people.

Why is it so hard to talk to someone when they want to tell you what their final wishes are? There are Living Wills and other legal documents you can file detailing your wishes but at times some people just what to know everything will be ok when they are gone.

I made a promise to myself that from this day forward, I would never avoid another conversation because it may make me uncomfortable.

January 21, 2017

Barry Manilow once said, “I write the songs” and it makes me feel like I write the stories, understandably not as well as his songs. Barry Manilow’s songs will make you smile and maybe shed a tear or two, but always gives you that warm feeling just when you need it.

The stories I try to tell are designed to give you HOPE without masking the horrors we face. We need Hope and not just the medical facts and statistics concerning our disease. We need to hear what it is like living with dementia from the inside out and you can only hear those stories from someone that is there.

We need more people to tell their story and make dementia more understandable.

January 20, 2017

Good golly, Miss Dolly. Last night was a blast. A little under 50 people cramped into a tiny room listening to 4 people telling their story about living with dementia. Can’t get any better than that you say.

Needless to say it was not boring, but informative and entertaining. I think we are very successful with getting our message out without ramming it down your throat. This is a platform that more hospitals should consider for helping newly diagnosed patients get started on living their life with dementia.

A positive and exciting note was I was asked to participate on a Spanish radio program about dementia awareness. You may not be aware but I created a Facebook group called No me olvides which is Forget Me Not in Spanish and designed for the Spanish community. The interest part of this is, I don't speak Spanish but have a tremendous drive to help.

January 19, 2017

You get drugged to one of my meetings thinking why in the world am I here but when you walk out you ask yourself, what in the hell happen? You are still living with dementia but for some reason it’s not so bad. You discovered HOPE by listening to others just like yourself, telling you how they are surviving.

You laughed even though you have dementia and for once since your diagnosis, you realize there is life after your diagnosis. You are not alone anymore and walking with friends that will never leave you.

It is magical when you discover, I can do this. Your medical condition has not changed but you mental one has. You will be pushed beyond what you think you can do BUT you will do it. I won’t let go of you until you are as happy with life as I am.

January 19, 2017

Your plate is full and life dumps another crisis on you. Your tendency is to bucker under and say, enough is enough. But what if someone sees something in you that even you don’t see, and is asking for your help. He is not seeking for you to solve the crisis, only help the person that is going through it.

There are times when others see the strength in you that you haven’t realize you have and asks for your help. Most will accept the calling and be glad they did. When I was asked to help those living with dementia my first reaction was, how can I do that, I am one of them.

I was given the strength I needed and even though my plate is still full, I look forward to finding more ways to help. Join me in my fight.

January 18, 2017

So many people look up to you and admire the work you do without realizing what it takes when you try to raise dementia awareness. You need to open your life and reveal your most private secrets and receive some of the harshest comments that some can say. I have found that many don’t want to believe living with dementia could possibly be that bad.

You don’t get paid for doing this but that is not why you do it. You do it to help others over the pain and suffering that you experienced without anyone helping you.

There is no glory in what we do, we just get to relive the darkest realities every time we speak out. The strangest thing about this is, I was never refused when I asked someone to stand with me and tell their story. We living any form of dementia, want to let the world know what our world is like and stand with us to change it.

January 18, 2017

Tomorrow I will be speaking to a group of newly diagnosed people living with dementia at the Lancaster Health Campus, along with three of my friends. The four of us are different ages with different forms of dementia but we share the same problems.

Each of us will explain how we are dealing with the changes in our lives and answer any questions the group may have. These talks are so important because we are all dealing with our disease in our own ways and it is easier to identify with the problems you may be having.

I am so thankful to Lancaster General Health for giving us, the people living with dementia, a voice to help others. We usually get around 50 people at each meeting and we have been doing this for the last three years.

January 18, 2017

I am never alone, I have my thoughts. Loneliness is never a problem with me because I have so many memories that I am able to relive. My thoughts go back a long way and I am sure they are better now when I remember them then when they happen.

These are the ways I entertain myself when no one is around. You may look at me and assume that maybe I am bored, but there are meanings to the words, lost in thoughts.

January 18, 2017

Why do we not want to be forgotten? Is it because of our insecurities or do we wish that our life has not been lived in vain. Is it important that a small piece of our memory stays with you when we are gone?

We all have our reasons why we want to be remembered and it is not because we want you to remember the suffering we caused but maybe the joy we shared so it will help you when you walk in the shadows of life.

January 17, 2017

A nondescript nincompoop, now that is a description that you no longer hear but could be used many times. Baloney was used so many times when I was growing instead of just telling someone that they are full of it.

A hot-blooded or fiery girl is never called a bearcat anymore probably for a lot of good reasons. Our language has changed over the years but at times I find myself saying something that the other person has no idea what I mean and they chalk it up to me having Alzheimer’s.

We seem to use so many words when we should just say, that’s baloney.

January 17, 2017

Give me a bag of walnuts and sit me in front of my fireplace. with my nutcracker and I'm one happy camper.

January 17, 2017

Sitting here listening to my music and feeling groovy. I finished my nutcracker and it’s sitting beside my desk drying after putting a coat of finish on it. Once it dries, I’ll post a picture and let you decide if it goes into the burn barrel or not.

Once again, I was asked if I’m sure I have Alzheimer’s, because I seem to be doing remarkably well. Legitimate question and one that doesn’t offend me and I am always happy to answer.

First off, I have made peace with Alzheimer’s and what it is doing to me. That doesn’t mean I like it nor do I have any control over it. It just means I will not allow it to dictate what the remaining portion of my life will be like.

I am not gifted or anyone special, I paid my dues and learnt that there is life after your diagnosis. I spend my time trying to deliver the message of HOPE instead of dwelling on the hand that life has given me.

I push myself to prove that even though I am living with Alzheimer’s, I can still be a part of the world you are living in. I pray people look at me and say, he is nobody special, if he can do it, so can I.

January 15, 2017

My version of a screw candle holder is completed and personally, I couldn't be happier. Not because I think it turned out nice but because it drove me to believe in myself once again and find a way to live with Alzheimer's.

January 15, 2017

It’s funny how one day you can be having the best day of your life and the next, you just want it to be over. You may have days of nightmares and spend most of your time in the darkness of dementia only to have one of those days that make living all the better.

That one day of HOPE overshadows any hardships that you have been living and makes you realize that it is not up to you to pray it will soon end. When I have a good day, I want to remember how I got there and how can I stay there.

My thoughts are redirected from how bad I felt to how can I keep these warm feelings I am having now. Only you can do this, not a magical pill or a prayer. I’ve spent many days in the shadows of dementia so don’t tell me how bad it is, prove to yourself that you can get back those wonderful days and begin to live WITH your disease.

January 14, 2017

I am higher than a Georgia pine this morning. I finished turning the remaining pieces of my rotating candle holder and if I have to admit it, it looks pretty dang nice to me.

It has been a while since I struggled with anything like this but my Georgia brother kept telling me not to give up and it will turn out ok. I’m gluing this thing together and after a final sanding, I will add the finish and hopefully end up with a family heirloom. If not, in the burn barrel it goes.

Living with dementia, life struggles at times seem to overcome you and you just want to quit and accept whatever is coming down the road. Not if you want to hang around with me. Life has taught me to never give up because you just might create a family heirloom.

January 14, 2017

I’ve spent so much time trying to find my sense of humor that I thought I have lost. I tried to remember that last time I laughed so hard that I had tears running down my face and I couldn’t.

We get so wrapped up in living with dementia that we forget that it is ok to laugh. Tough crap if we are being disrespect to dementia, we are only showing it that life does go on.

The days of holding my belly from laughing so hard may be over, but the chuckle that comes out now and then, reminds me that there is life after your diagnosis.

January 13, 2017

WOW, I climbed a mountain and I’m standing at the top looking down over the valley. Yesterday I struggled with a woodturning project I am working on that I was at the point of giving up on it. Today that pesky voice told me, do what I say and not what I do.

I’m telling everyone to never give up and there I was, about ready to do just that. The project I am working on requires me to thread a piece of wood I rounded and then take another piece and tap it so they thread down on each other.

I had myself talked into I was unable to do it because I have Alzheimer’s. I used my Alzheimer’s as an excuse instead of trying to figure out a different approach to do it. Giving up or giving in so much easier then looking at yourself and making yourself believe in yourself.

I still have a long ways to go until I complete this project and I’m sure more valleys to cross but I was able to give myself HOPE and walk a little bit taller. This victory did not cure my dementia but it did pull me out of my pity party and make me realize I still have so much to offer.

January 10, 2017

I’m standing at the crossroad between light and dark and waiting to see which direction is drawing me. After so many year, you realize when the rug will be pulled from under you, and you fall.

I know what I would tell someone if I was mentoring them, but I always had problems listening to myself. Do as I say and not what I do comes to mind. When I am talking to someone, everything is so easy and seems to fall in place that I never worry what the outcome will be.

But when I talk to myself, I always have doubts. My motto is don’t over analyze it, just do it. but the what if games begin to play and I end up doing nothing. Good thing I have someone looking over me to lead me the right way.

January 9, 2017

Every now and then a name pops up in my brain and I wonder why in the world did their name come back. Memories are fascinating because we never knew that we had them until one day we remember them.

Childhood memories flood my mind but I never know if they were real or not. Sitting on a dirt road playing is so vivid in my mind but I can’t remember where I was. Is my mind playing tricks with me or are these memories really true?

I don’t know if they were real or not, but they are always pleasant and I don’t mind them invading me.

January 7, 2017

Last night at our Memory Café, the question was asked, can dementia affect a person’s walking?

Historically, the emphasis and study of the symptoms of Alzheimer's disease focused almost solely on cognitive issues, looking at what type of impairments developed- such as memory, language and behavior- and what interventions and treatments were most helpful.

More recently, however, there is an increasing awareness of the physical effects of Alzheimer's disease, especially on one's gait in walking. It’s like driving a car, you need an engine, a chassis and steering. The engine of walking is the heart, lungs and blood. The chassis is the muscle, joints and bones.

The steering is “the wiring”, the nervous system. Damage to the wiring is an important shared problem of difficulty with thinking and moving. You may notice your loved one walking slower or taking smaller steps. They may develop balance problems and take little steps when turning instead of turning on their foot. If you take notice of this, you must be aware of any decline in their cognitive abilities.

January 7, 2017

I am the great pretender. Even though I am living with dementia, everything is always ok, at least I pretend it is, under that smile is a different story, the horrors I am living can be seen and felt if you know how to get beyond that wonderful smile I am giving you.

I can trick most into thinking I am handling my dementia without any problems and even make them admire the way I handle all the diversities that is going through my life until I close my eyes and there is no one to trick.

I call this reality, it doesn’t care what is right or wrong, it is what it is and forces me to remove that wonderful smile and face it.

January 7, 2017

I can do this. The further you walk down the path of dementia, the more you need to remind yourself, I can do this. Times get hard but with a little patience, they get better. This is when you find out what you are made of and most times we are surprised when we find out how strong we have become.

There will be times when the darkness is overwhelming and we need to remember to turn on the light. Don’t sit in the darkness, find a way to bring the light back into your life.

It may be a change of attitude or standing up to your fears and saying, no more.

January 6, 2017

On the road again, going places I never been. This is what living with dementia is like. I’ve taken a break but there is so much to learn and live when it comes to Alzheimer’s.

2017 will bring so many changes and most will not be so nice, but I have to live through them in order to explain what our life is like as we progress. You have no idea what our life is like until you lived it and find some way to explain it.

It is exciting but also scary because you are entering a life that no one talks about. I thought I hit bottom at times to only find out that I only skimmed the edges. So much needs to be learn and understood about the emotions that go with dementia and I hope I can be part of that.

January 5, 2017

It’s right on the tip of my tong, I just can’t seem to remember. How many times do you say this if you are living with Alzheimer’s or some other form of dementia. Unfortunately, most times it stays on the tip of our tongs and we are never able to recall the memory.

We know we should be able to remember, but we can’t. This is the cruelty of dementia, it keeps our memories just outside our reach. I never take anything for granted, I should remember, I just don’t.

January 4, 2017

I’m sitting here by my window wondering if today will be the day I receive my first of many seed catalogs. With the amount of catalogs, I get, you would think I was planning on planting several acres this year.

I love looking at the plants comparing them to the plants I remember that I once grew in my garden. I remember my garden as being rich and bountiful, but Hazel tells me it was mostly weeds.

Doesn’t matter, it gets my mind off the dreary part of winter and daydreaming about once again sitting on my bench complaining about the squirrels eating out of my bird feeders.

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January 3, 2017

The hoopla is over and it appears that everything has been de-Christmased and it is back to the real world. I’m starting to read some of the posts and can’t make up my mind if a pat on the head on a kick in the pants is needed.

I just want to tell some people that it may be up to them to help themselves and maybe a change in attitude would give them some peace. I believe in compassion and helping someone up but I refuse to enable someone so they can stay in self-pity.

The world is dark and ugly, but it is also bright and beautiful, it depends on you which part you visit.

January 1, 2017

Here it is 2017, a brand new year and I wonder how many of our problems we will drag into this shiny new year? Many of our problems we think we can’t get rid of because they became part of our lives and maybe we don’t want to separate ourselves from them.

Now is the time to clean house and do away with the problems you can live without. Sometime you walk away and not look back and others you need to decide if they are worth fighting for. It is not what is right or wrong, but what is right for you and will bring you peace.

Sometimes admitting you may be wrong, will bring you that peace you are looking for.

December 31, 2016

Does it hurt, I’m asked? Does what hurt I answer back, living with Alzheimer’s they say. No there is no pain unless you factor in the emotional pain that is caused to the people that watches me during my decline.

I suffer through the pain in what they feel. I see the grief in their eyes and can’t help feeling the pain because I am causing it. I don’t think living with dementia would be so hard if it did not affect our caregivers the way it does.

I have control over it, I wish they would learn how to also.

December 30, 2016

How do I get on the Path to Heaven or is that just another name for the Path of Dementia and I’m already walking it? I always said I am walking toward a better life, but could that life be in Heaven.

So many times, I get tested and fall into the dark side of dementia. Do I give in or do I continue walking, learning a lesson? There is a reason why I am living with dementia, and a purpose in my life, and it is up to me find out what it is.

December 30, 2016

2016 will not go down as one of my favorite years. I lost so much this year and now walk with a cane. I should be thankful I’m still breathing but I’m still capable of seeing how my life was last year at this time.

I guess I could sit here and whine about, but I won’t. I know it will get worse and next year at this time, I may not be able to tell you about it. Alzheimer’s may have wrapped its arms around me and lead me onto the part of the path that no one has ever talked about before.

I don’t know what to expect in 2017 but I will face it with dignity, one day at a time.

December 26, 2016

We are approaching a serious time for so many called post-holiday depression. People are kept busy during the holidays and afterwards the excitement and company leaves and they feel so alone.

I believe there is an increase in headaches that people living with dementia suffer due to the sudden decrease of holiday activities. Everyone seems to return to their normal life, and we seem to be forgotten.

I sometimes call it burnout because I am so busy leading up to Christmas and then it seems everything comes to a halt. This is when I make an extra effort to keep my mind active by creating projects and warding off depression. Winter blues, cabin fever, whatever you want to call it, can become a serious medical problem. Learn about the symptoms of depression and watch for them in your loved ones.

December 26, 2016

It’s been a wonderful couple of month’s being away from Alzheimer’s but it is time to get back to my life’s calling. I was given the time to enjoy the Christmas Holidays but sad to say, Alzheimer’s is calling me back.

The window is closing and there is so much work I want to accomplish before it closes. I was offered so many opportunities to speak at various conferences to carry my message and many heard me by the responses I received. This is encouraging and drives me to work harder.

I am ready to part with the Holiday Season and back to raising dementia awareness. This past year I tried many ideas that just didn’t work out and it is time to put them aside and try a different approach. I want to expand our Memory Cafes and bring our dementia community together, that is where the change is happening. I pray for a good year.

December 21, 2016

Somewhere in the distant night, I can hear voices saying it is almost time to come home. Are they telling me that my years of suffering is coming to an end or is it Hazel yelling out the back door that dinner is ready?

My mind tends to play tricks on me and I don’t really know what is real or not. I no longer worry about forgetting things or losing something because most times it is right in front of me but I no longer remember what it looks like.

My thoughts get muddled and faces and names are fading. It is not bad though, because what I lost will never come close to what I found.

December 20, 2016

Tears you never see because we don’t cry in front of you. We shed these tears when no one is around for reasons only known to us. You may see us and think everything is alright not knowing behind that smile is a wall of tears.

I often wonder why it is so hard to reach out for help. Sometimes we need to feel the pain to know we hurt. Look beyond that smile, maybe you are the one that can help.

December 20, 2016

I get to talk to many just starting down the path of dementia and at times, it can be very difficult. I often hear, the doctors are wrong and there is nothing wrong with me to maybe, why me?

It is natural and I’ve been there. I certainly don’t want to break their fragile bubble, only explain the realities of their disease and give them Hope to start their journey.

They need to know that there is life after their diagnosis and no matter how long that may be, it is up to them how they spend that time. I believe in medication to handle the symptoms but you must learn how to control it and not let it overcome your life.

There is no book, Living with Dementia for Dummies, only life experiences. So where can you go to learn these secrets, simple, talk to someone that has already made peace with their diagnosis and learn from them.

December 19, 2016

Do you ever worry about losing touch with reality? I don’t because I’m not sure what is real and what is a fantasy in my mind anymore. Are my hallucinations real, because they are so vivid, or just tricks of the mind?

My mind seems to wonder a lot and takes me to some of the most glorious places. Places I never visited but in my mind, they seem real. I hear the sounds and smell things all around me.

I have one of those automatic room deodorizers sitting by my chair that spays out a flowery scent, and sometimes if I am reading and it sprays, my mind wonders to a place with lots of flowers and takes me on a fantasy journey. It is not always bad living with dementia.

December 17, 2016

When I was younger, I often heard about people walking with one foot in the grave. I never knew exactly what that meant, but I assumed it was really bad. After walking on this path of dementia for so long, I now have a pretty good idea what that term means.

After a while, your dementia progresses and you begin to fall off the path and you begin to see what may lay ahead of you. It seems like you know you are losing the battle and little changes that most people never see, reaffirms your beliefs. You are still walking but don’t realize it anymore.

December 17, 2016

A light dusting of snow and a heavy coating of ice makes shoveling difficult. After shoveling the sidewalk, I decided to try out the snow blower on the driveway and two minutes I had the driveway done wondering why I didn’t use it on the sidewalk.

Doesn’t matter, I’m back inside where it is warm with a hot cup of coffee. Last night I gave out the Christmas candle holders I made at our Memory Café and enjoyed another festive meeting. This was after we returned from the Christmas Craft Show and before our Friday Night Chat, what a day.

December 15, 2016

What a wonderful time we had last night at our Christmas Party Memory Café at the Lancaster Health Campus. We played a lively Christmas question game which not only brought back many wonderful memories but also created quite a few laughs.

Our group is growing leaps and bounds with two more couples joining us. The companionships and bonds we created is simply amazing. It is my belief that more Memory Cafes will be so beneficial and I am going to try my best to see this happens.

December 14, 2016

Hazel makes sure I keep socializing with people. We go shopping, not to buy anything but just get me out of the house and around people. I love talking to people and will strike up a conversation with anyone that allows me to.

I no longer drive so I am basically home bound, while she is at work, and she worries that I may be isolating myself too much. I am fortunate that I have my woodworking to occupy my time and I do a lot of reading. I love reading fantasy stories of days gone by and wonder what life would be like living with no internet, cars or TV.

It is so important that people living with dementia keep their body and mind active but also how to relax their mind and let themselves dream. If we don’t have dreams, we will find out that our dementia stole our will to live.

December 13, 2016

We tend to think the Christmas Holidays are a joyous time, and for most it is, but there are those that don’t. This may be the first year that Christmas comes without their loved ones and the loneliness is unbearable.

They are the ones that need a hug to remind them that they are not alone. Care giving is stressful and at times we just want relief, but when the time comes that your care is not needed, your life becomes so empty.

We need to wrap our arms around all caregivers and remind them of the love they showed us, but most importantly, we are now there for them.

December 11, 2016

Does someone with dementia get burnout? I am so tired of living with the symptoms of Alzheimer’s and having no escape. I just want the walls to stop closing in on me and knowing the battle is lost.

I feel great during the Holiday Season but come January, the bottom will once again fall out from under me. The excitement will be over and we will be back to whatever normal life we are having.

Dementia will welcome in the New Year with promises of more declines. Depression is a serious matter and waiting until it arrives is not the way to treat it. Make plans to keep busy and not just want to sit back and relax after the hustle, bustle of the holidays.

I am more alert when I keep myself busy and that is why I am planning so many new projects to keep my mind occupied with exciting thoughts and not Alzheimer’s.

December 10, 2016

When is the last time you heard, anyone say, “All I want for Christmas is my two front teeth”? Today the wishes are a lot more expensive. All I want is a hunk of wood so I can turn something and give it away. My luck I will get a 2x4 all wrapped up.

Hazel and I don’t exchange gifts because we feel we have all we need. Whenever we want something, we just go out and buy it. I would rather make her something and she could put a smile on my face by baking my favorite cookies.

Our Christmas is about the spirit and not what we get. My return gift is the smile I get when I make something and give it as a gift. I love turning the grinches in the world into Santa’s helpers.

December 8, 2016

Are Care Facilities like a safe deposit box where you place your family valuables and they are safe, sometimes forgotten? Just put them away knowing someone is watching over your valuables.

What a horrible thing to say, but this is the results of many. Very few facilities are busy with visitors and the residents think their home is a safe deposit box. I often become family to many because they have no one else.

Visit someone, you don’t even have to know the person to make them feel loved. If you need advice, just ask someone that visits regularly and they will tell you it may get emotional but you will always be glad you went.

December 7, 2016

My world is dark and so quiet. I live in the world of dementia and it is so lonely. The people are friendly but just want to be left alone. You have no idea what this world is like until you lived there.

I believe it doesn’t have to be like this and plan on doing something about it. I am bringing joy and Hope into this world. The Hope I am bringing is not the promise of a cure but the idea that there is life after your diagnosis.

I will teach you how to laugh and how to make the most of the time you have left. I can’t do it all by myself, I need your help to face your fears and walk with me toward a better life.

December 6, 2016

Something new I can add to my resume is that I now use a can while walking. Frequent falls and stumbling led to the decision that I needed some type of help with my balance.

Just another way I needed to adapt to living with dementia and enjoy my life. I could have given into my vanity and risked breaking my hip next time I fell or I could compromise in choosing a can.

I wanted one with a sword hidden in the handle but my doctor said no and I had to agree with one that had stabilizing feet at the bottom. It doesn’t matter because Hazel thinks I look dapper walking with my cane and that is all that matters.

December 5, 2016

When you reach the later stages of dementia, are you still aware of your surroundings? I think it depends on the person’s cognitive abilities. I am not interested in politics nor keep up with all the killings or the different wars that are being fought, so I would fail a test on current events.

If it is bad news, I don’t want to know about it. Now if you ask me if I think someone in their late stages can communicate with you. I would say yes, if you can understand their method of communication.

When you talk to us, you must enter our world and learn our body language. I have many wonderful conversations with someone in their late stages without them saying a word. I know what they are saying by reading their body language.

December 4, 2016

When you are in your mid stages of dementia, you still have a lot of vim and vinegar running through your blood. You still have passions and desires to carry the flag of dementia awareness wherever you go.

The late stages are different. You realize the fight is over and you begin to wonder about the next phase of your life. Life around you are no longer important because you moved on to the next chapter.

We are safe and content where we are going but our carers are still trying to save us. They do not see the light we see and realize we are in someone else’s hands now.

December 3, 2016

It is said that in order to be happy you must first like yourself. I don’t mean how you look, but how you feel. Have you been hurt and never got around to forgiving the hurt and let it fade from your memories?

Did you make mistakes and not forgiven yourself from making them? Most people living with dementia can be happy if they take the time to like themselves. Most problems will eventually fade from your memories but until they do, forgiving yourself will give you a better start on this path of dementia.

December 3, 2016

I cleaned up the leaves in the yard for the very very last time today. I got two new front tires for my John Deere lawn tractor and thought mulching up some leaves would give those babies a test before it snows.

Here I am with my winter jacket on, along with gloves, listening to Christmas music on my headphones and probably humming as load as possible. None of my neighbors think this may be strange because they know I am possessed with the Christmas spirit.

They just smile when I drive by, wave and yell Merry Christmas.

December 2, 2016

After attending a viewing for a dear friend last night, I was feeling his loss and had to do something, so we went to our Memory Café that Mary Howard has been running for the last 4 or 5 years. If you could capture and sell the love that is in the room, you would make a fortune.

We are one big family with none of the sibling rivalry. It was our Christmas party and everyone brought a covered dish. Sharing the Christmas Spirit with friends that understand what you are going through and supporting each other the way people living with dementia do.

Many have their own concept what a Memory Café is like, but ours is special. I’m sure everyone thinks that and that is why we need more Memory Cafes springing up everywhere.

December 1, 2016

I remember the day all so well when I got a phone call from a friend, that was in a Philadelphia hospital, with the news that he was waiting for, a long time. He was 29 years old and he only had to say, tonight’s the night. Can you come down.

I was so scared but holding back tears, Hazel and I drove to the Philadelphia Children’s Hospital where he was waiting for a heart and lungs transplant. Along with his wife, we visited prior to his operation. He told us he heard the helicopter landing and it won’t be long. We refused to say goodbye because in my heart, I knew it was a new beginning for him.

So many complications but I knew he was a fighter and would never give up. Daily we made that trip until he could go home. This is when I learnt what it is like to fight for your life.

Afterwards we all visited Williamsburg and if you would look at him, you would never in your life believe anything happen to him. We talked privately about his experience but he would never talk publicly about it.

This week he died, but I had to promise him back then, that I would not shed tears when his new organs gave out. It’s hard, but I will remember him and not mourned him.

December 1, 2016

Way back in August I tried to warn you that December was right around the corner, and I was right. Here it is December 1st and I bet many still don’t have their Christmas tree up yet.

I laugh because I am sitting here gazing at the most beautiful tree I ever had and you are still trying to untangle lights. Last time I had a blood test, I asked them to check to see if any elf blood was running through my body, that would explain my behavior.

For the next 25 days, I will be an uncontrollable little child, wetting my pants with excitement, well maybe not that excited, but I bet you avoid me if you see me out shopping. Let me be the first to wish you a Merry Christmas and stop being so grumpy.

November 29, 2016

Who needs more support, the caregiver or the person living with dementia? I am an unreliable source because I only see the needs of someone living this disease. My focus is only on the person not because caregivers don’t need support, but because that is where I live.

Both crusades are honorable and I will help in any way but if it comes to standing on top or crawling deep in the hole, I would rather be in the trenches telling you what it is like.

Different approaches need to be taken, but my approach is care before a cure. Maybe spending too much time in the dark side made me realize what is important to me. I want to get rid of the darkness and give us a chance of seeing the light.

November 28, 2016

Have you ever noticed that if you walk into a store that has glitter on their merchandise, that it instantly jumps onto your clothes? You can’t get that stuff off. You brush it off but somehow it is on your face and in your hair.

I love it and retailers do also, they can see who picked up the things they are selling and took a good look at them. Tis the Holiday Season, don’t be grumpy, enjoy a little glitter on your body.

November 27, 2016

I have the best time of my life sitting on my plush rocker/recliner with a cup of my favorite coffee, looking out the window. Well my Christmas tree is sitting in front of the window so I guess I’m staring at the tree.

Doesn’t matter, I’m still enjoying my life living with dementia. You could say my life is childlike but what is so bad about that. Children are carefree with not a worry to prevent them from laughing. They are not allowed to hate so they don’t.

My dog is lying beside me and loving me unconditional and only requires her ears to be rubbed to know I love her to. I have a wife that meets all my emotional support and provides all the wants and needs I have.

The Christmas spirit has overtaking me and my inner peace is burning warmly. Money did not help me enjoy my life, love and support and knowing that there is life after a diagnosis of Alzheimer’s plus a willingness to accept my diagnosis and get on with my life.

November 26, 2016

I sometimes wonder if that void I slip into and can’t remember where I was is a sampling of the late stages of dementia? I don’t think for a minute that you go from mid stage and fall off the cliff into the late stages all at once.

There must be a transaction in your progression and I wonder if you might realize it is happening but never say anything. I’m sure I’m not the only one taking notice of these changes but no one ever talks about it.

It’s not anything unpleasant or makes me uncomfortable, just something I can’t explain.

November 26, 2016

I have worked all my life trying to make you happy. For years, I loved your laughter and smiles that rocked my world. That all changed the day I died and the laughter stopped.

I knew the moment I died that I failed to make you happy and I knew you would have a Blue Christmas and not be smiling this Holiday Season. No I didn’t die nor is it my plans but, so many allow the grief of their lost ones to overshadow the memories of previous times.

You feel the loss but never forget the joys and love you had. Remember how you felt when they looked at you and the pride you had in the things they accomplished. Honor the loss but don’t allow grief to take away the wonderful life you shared.

You may shed a tear but also share what they meant to you. Turn you Blue Christmas into a wonderful time of remembrance.

November 25, 2016

Confusion, I hate it. Things sound so simple to you, but to me, I get so confused. When you are living with dementia, confusion is a major part of your life. Forgetting things is one thing, but confusion is quite different.

When I get confused, I zone out. I lose interest and sometimes get agitated because I just can’t understand. You get frustrated because you can’t make me understand, but I just can’t.

How do you explain the emotion of confusion and I can’t? I often talk about the feeling of being lost and how hopeless it makes me feel but now I wonder if I’m just confused.

November 24, 2016

Have you ever thought about the autumn of your life? What will it be like, and will you be happy.? I believe it depends on what you expect and how you spend your time preparing for it.

I believe I am in my autumn of my life and it is wonderful. I have found the purpose in my life and I am following my dreams. I fought a hard battle but found inner peace and can say I honestly like myself.

I have made many mistakes in my life but I have admitted to them and made amends. I look forward to the autumn days of my life because I know they will be wonderful.

November 23, 2016

If you think you are bitter now because so many in your mind is better off than the person you are caring for, just wait until that person no longer knows you and you realize how much time you wasted being bitter and not connecting with the person that you once knew.

Dementia is cruel and doesn’t wait for you to accept its terms, it progresses along without you. Every day you spend venting is another day lost that you will never get back. You may feel better after a hateful rant, but be prepared to do it again tomorrow.

There is help for you but it can’t be forced on you. You can only accept its terms and learn ways to live with it. You can’t fight it, the battle is already lost, there is no cure.

November 22, 2016

No other time in the year does creativity pour out of me then during the Christmas Holidays. Most of the year I spend raising dementia awareness and walking the path to a better life.

But during this period, it seems I am released from my work and given the ability to repay all the good fortunes I experienced during the year. Dementia is always close by but it seems that at Christmas I can escape from the doom and gloom of dementia and see nothing but beauty.

Unfortunately, it is only a break and the realities of Alzheimer’s will take me back into its world. I am thrilled with the reward I receive each Christmas Holiday for the work I do the rest of the year and will work tirelessly until my next reward period.

November 22, 2016

What do I have to look forward to after living with Alzheimer’s for 12 years. I’ve seen the good, bad and the ugly and been fortunate enough to describe them to you. Sometimes I upset people when I talk about the ugly, but if you want to learn what it is like living with dementia, you need to listen to that also.

What is next is called the end stages and a stage I have no experience with. I spent time with many people living in it and can only observe and but not feel what it is like. My observations may be wrong and I can’t talk about it until I lived it.

I don’t want people to tell you what they think it is like, I pray God gives me the ability to tell you myself. It may not be as bad as what we think we see.

November 21, 2016

I heard something the other day that I haven’t heard in a very long time, and that was laughter. It wasn’t from the main stream of people but those living with dementia.

Sitting around and not talking about politics or the economy, but just enjoying each other’s company. No hatred or raised voices just chit chatting about nothing of importance.

I remember the days when we asked, don’t kids know how to play anymore and now we ask the “grown ups”, don’t you know how to talk anymore. Are the days of talking without anger over and are we falling into the period of silence?

November 20, 2016

Are you willing to carry hate and arguments to you grave because you are the only one that will? The person you are most angry with may be living with dementia and may not even remember the anger that you carry.

So many families are torn apart because of dementia and would rather carry that hate to their graves instead of forgiveness. Turning off the switch of anger is hard but trust me, dyeing with it is harder.

November 19, 2016

Should you invite someone living with dementia to your Holiday festivities or are you removing them from their safe zone. Will you be adding to their stress or isolating them further into the world of dementia?

Millions living with dementia are caring for themselves and living alone and have no social life. Some say that they have problems being around two or three people but the Memory Cafes that we run prove differently.

Each person is different and it is careless to categized everyone from the experience of one. When inviting someone living with dementia to your party, you need to make changes to accommodate them.

Consider the size of the room and background noise. Provide a safe place they can retreat to, if necessary, but don’t isolate them from family gatherings. At meal time sit them at the end of the table and not toward the middle. If they are sitting in a chair in the corner, they feel safe. Let them be part of the living.

November 19, 2016

Thanksgiving will be upon us this week and we celebrate with a feast and family gatherings. What does Thanksgiving mean to you? Do you remember the turkey and stuffing and of course pumpkin pie or does it hold a different meaning to you?

Thanksgiving, to me, is a day we give thanks to the good fortunes we may have had during the year. Living with dementia it holds a more spiritual meaning to me. I know and accept my life is in the hands of someone else and I no longer control my future.

Thanksgiving is when I give special thanks for the strength I was given, to do the work I do. I give thanks for discovering this person that dementia is making me. Thanksgiving means so much to many, but most of all I give thanks for discovering this wonderful world of dementia I live in. It is completely different from whatever I once knew, but I know this is where I belong.

November 18, 2016

Many of us are starting to decorate our Christmas tree and realize that there are bulbs burnt out in the strings we tucked away last year that shined brightly when we packed them away, how did this happen? We frown and go out to buy a new string.

I think of those strings of lights as representing my dementia friends living with dementia. Each year when I take inventory, I realize that the light has burnt out in so many of my dementia friends.

I can never replace the lost light with a new one because it became part of my heart. I can’t bring them back but I can remember them this holiday season. When you are out front fighting for dementia awareness you often shock on the tears for those lights that burnt out this year.

November 17, 2016

I often speak out on how lonely someone living with dementia can get. How the walls close in on us when we think about our future and the people we will leave behind even though we are still living.

But have you ever sat with someone caring for us and watch them break down in tears due to the stress of caring for us. I have no words; I can only offer my hand to let them know I understand and pray that the love I have for them reaches through their stress.

Caregiving can fuel the emotion of loneliness especially if the person has no help. They often lose communication with family and friends and have no one to share their grief with. They are not looking for you to do anything, just be there for them.

I believe it is possible to give all your love to the person you are caring for and have a need for someone to give a little back as a reminder that you are not alone. You do not have to be “in” love with someone to let them know you care about their wellbeing. Learn the art of compassion and understanding and return some of the love they are giving up.

November 16, 2016

Just got home from an amazing 2016 Alzheimer’s Disease & Related Disorders Forum sponsored by the Pennsylvania Department of Aging, with Kim Lemon, news reporter from the News8 newsroom acting as moderator for the program. The panel I was on, consisted of four of the most knowledgeable women in dementia care and research I ever met. My role was to give my thoughts on living the disease and what I think needs to be done.

During lunch, I met and talked to many medical professional and was humbled when they told me what an impression I made on them and more people living with dementia needs to speak out at these forums. The door was opened, now we need to take advantage and educate the professions, they are willing to listen.

November 15, 2016

Care before a cure, why is that so important to me? Will I ever see a cure and what exactly is a cure. Would it reverse all my memory loss and would my brain be better than anyone else my age?

I think a cure will be a method to prevent the disease, maybe like a vaccine. Some think a cure is a way to stop the progression of the disease and with 12 years already under my belt, how much good would that do me.

Care on the other hand seems to be a higher priority. Help us find ways to live with our disease and stop telling us you are getting closer. That story is getting old and we want to see the actual progress that the money we help collect is being used the most efficient way.

Many like me, believe that there is not enough time remaining in our life to see what a cure would mean but we could benefit with having a better quality of life. Better programs to help our families financially and lowering the cost of the medication we take.

November 14, 2016

Wednesday, I will be on a panel along with four distinguished doctors and medical professionals at the 2016 Alzheimer’s Disease & Related Disorders Forum in Camp Hill, Pennsylvania. Kim Lemon from News8 will monitor the discussion on various aspects of dementia.

This is the first of two panels and several guest speakers will be addressing the all-day event. We have come so far, that these medical professionals listen and appreciate the voices of someone living with dementia.

We still have a long way to go, but working together, we will get there.

November 14, 2016

My doctor recommended I consider using a cane because of my balance problems. My reply was, can I get one with a sword hidden inside. My way of softening what he was telling me.

Reality never stops telling us that we cannot alter our future. Age and my dementia is taking control of my brain and body. Denial is a thing of the past and the window of opportunity is getting shorter.

I have too much work I want to accomplish to achieve my goal and don’t have time for political nonsense or who likes me or not. Too many people are relying on me to say the things that they can’t and they are the reason I am still alive.

Every now and then it is important to reaffirm what is important in your life and make changes when you drift away from that.

November 12, 2016

11 days until Thanksgiving then there will be no denying that Christmas is just around the corner. Before you know it, you will also be humming Christmas songs and enjoying it. You may even say, Ho Ho Ho with a smile on your face.

Begrudgingly, decorations will be going up and the, I hate Christmas people will come out of the woodwork and that’s ok if they stay in their world and not try to enter mine.

Like most, I dislike the commercialism of the Holidays but enjoy the warmth and fellowship during this time of year. People that know me know that I never buy gifts, I make them. Climb on my imaginary sleigh and ride with me.

November 12, 2016

When you speak about dementia, do you talk about the statistics and the medical aspects of living with dementia? Can you name five different forms of dementia and the symptoms of each? Do you talk about this disease from a clinical point of view and keep it very positive?

Or do you talk about the emotional side of dementia through the eyes of someone living it. Can you describe the emotional fears we have and what that path we are walking is like? Both sides of the story need to be told but are you willing to look through my eyes.

Most people want to learn about dementia but don’t want to hear about the dark side. Let’s keep it positive so no one gets upset. Unfortunately, our life is not always positive and can be downright scary at times. Times are changing and we want to share with you some of the things that we feel. Give us a chance, and listen to us.

November 10, 2016

I got into an interesting conversation concerning the fears we carry when our family learns we were diagnosed with some form of dementia. So many react differently when we tell them, that we are almost afraid to say anything.

Will they refuse to speak to us again, ignore us or maybe treat us differently. This fear often tends to make us hide our secret so no one finds out. Usually this doesn’t work out because our dementia is not waiting on us to get the nerve up to tell anyone.

This is one of the first fears you will face after you have been diagnosed. There is no easy answer because each family is different. One thing you can be sure of, you will need each other during your disease.

It’s better to spin the dice and take your chances. You are guaranteed to lose if you try to hide it.

November 5, 2016

When you are diagnosed with dementia, you need to learn how to walk again because the path you are on is unlike any you walked before. You can’t see the pitfalls that you will fall into, or imagine the highs and lows this path will take you during your journey.

Most of all you must learn how to pick yourself up when you stumble. You may not need a walker but you must learn to accept an offering hand when you need it. You must learn how to be by yourself, because there will be times when you are so alone.

Why are we walking on this path if it is so hard and the answer is simple, the reward at the end is worth it. i like to think I'm walking toward a better life.

November 4, 2016

This week I had two bags of wood shaving to dispose. That is a lot of wood turning, but I’m in a race to beat the clock. Christmas seems to be so far away but when you make all the gifts you give out; it seems you are racing against time.

I just turned a beautiful lamp post candle holder and realized I turn the top to small and can’t use it. No time to get upset, throw it in the burn barrel and start again.

Needless to say, it’s beginning to look a lot like Christmas at my house. I don’t remember if I ever mentioned it, but I love this time of year.

November 3, 2016

A penny for your thoughts, when I tell them, I hold out my hand. I’ve been giving my thoughts for years and never received a penny. There goes that myth. Food for thought, I’ve been using this for years with my doctor tells me I should lose some weight. I’m just trying to fuel my thought process with a bag of chips sitting beside me.

A penny for every time you said that. Now if that were true, Hazel would be rich. I love it when someone I meet asks me how I am doing and I start telling them. It took me awhile to realize they weren’t asking a question.

My dementia forces me to focus on what people say and sometimes they say the dumbest things.

November 1, 2016

Can you see the hidden tears or do you see a smile and think everything is ok? Probably not because early in our journey we were taught how to fake happiness. Life taught us that we need to hide our emotions and protect you from our disease. I hardly ever hear someone with dementia break down and cry about their future and what lies ahead.

Mostly men will never do that because we were taught at an early age, boys don’t cry, suck it up and get on with life. We do cry, but you will never know. Our tears may be in the form of a nightmare that wakes us up in the middle of the night.

Most of us don’t see the boogy man in our dreams, we see real life. My nightmares are vivid and so real to me. I never discuss my dreams because I need to suck it up and get on with life. There are nights that I’m afraid to go to sleep because my future is waiting for me.

November 1, 2016

Who do you trust well enough to let into your world. Many people visit but are never allowed into the inner sanctions of dementia. We talk to many about living in the world of dementia but few get to hear what the inner most parts are like.

There is a reason for this and goes around trust. We don’t want people to try and fix it, just accept it. You may not like the curtains I have hanging, just don’t tell me they are ugly.

It is so hard for people to listen and not give their opinions. You may visit but must remember this is the world I live in, don’t try to change it. The people we allow into our inner world are the people that accept us for what we are.

November 1, 2016

Do people living with dementia enjoy looking at pretty things or is their life so drab that they miss the beauty in the things they are looking at? You tell me, have you ever wondered what they are staring at when they look at something?

Are they lost in thoughts and admiring what they see or are they thinking, what the hell is this? Could be either but most likely they like what they see. I personally love to look at delicate things, but dare not touch them.

I stare at the grain in wood or the intricate carvings of wood carvings. I get up close to oil paintings and look at the brush strokes. We do like to look at pretty things but are often restricted because we might hurt them.

October 31, 2016

How many of us look up into the sky and wish upon a star? I couldn’t imagine a guess, but I do know what a lot of us living with dementia wish for. We seldom wish for a cure because we realize that is not within our reach.

We don’t wish for money or wealth nor do we wish that someone would like us. What we do wish for is peace and a better way of life for all living with dementia. Our wishes tend be lean toward our disease and helping others.

People living with dementia are the most loving of people once you reach them. Sometimes it may take effort on your part, but well worth the effort.

October 31, 2016

I’m living with dementia and only need someone to tell me everything is going to be ok. I know the world is in turmoil but there is no need to tell me the details. I need someone to tell me that I will be loved and cared for.

These are the thoughts of us living with dementia. We live in constant fear that everything is not ok. We know that we are slowly dyeing and there is no cure for the cause and that doesn’t bother us.

Not being loved or forgotten is what weighs on our minds the most. When you are caring for us, take a moment and let us know that we are loved and everything will be ok.

October 29, 2016

I have dementia and I am always so tired. I just want to sit in my chair and be left alone. Why is this? Is it because I am not getting enough rest or is it because I am not getting enough activity.

So many times, you are not exercising your brain or you muscle and your body is simply given up. I am not encouraging you to join a gym and start pumping iron but am trying to tell you to do something.

Read a magazine or book, take a walk outside, do something that will redirect your thoughts to another place. Pump some life back into your body and help yourself live a better life.

October 28, 2016

I have been so busy with the spirit of Christmas the last couple of days that I forgot my problems with dementia. How is that even possible and the answer lies within redirection.

My symptoms did not go away; my thoughts were redirected in a different direction. I was led onto another path away from dementia. This distraction will not last but gives me time away from the doom and gloom of my life and enables me to recover some of the energy that dementia robs from me.

I am a hopeless case because this spirit will be with me until January. Yes, Christmas music is playing and I am singing along with it. I am closer to Heaven then anytime of the year. I am wearing my coat of love and through these turbulent times, I can see the good in people.

I love the Spirit of Christmas and wish it would engulf me year round.

October 26, 2016

Before and After. I don’t want anyone to say in front of me that someone living with dementia doesn’t have an imagination. I could take a hunk of wood and remove what I didn’t want, and come up with a pretty nice lamp post.

No plans or patterns, just put it on my lathe and let my imagination do all the work. Never give up on the things you love to do.

October 25, 2016

Can you look through my eyes and see the things I see? Can you feel the things I feel and understand why I am the person I am. Most people can’t because they have their own ideas what living with dementia is like.

They get to know the person that they are caring for and assume that is what living with dementia is like. They probably have not touched the tip of the iceberg, yet.

I live in the world of dementia because, I have to, I admire the people that visit my world because they care and want to. Working together we can change how people view dementia.

October 24, 2016

What really hurts is when I look at you and you finally see what dementia is doing to me. I thought that I was protecting you from the horrors of dementia but I was only preventing you from learning about the changes that were happening to me.

We think by hiding the changes that we see, that maybe you will never notice. Not true, you can only hide for so long then dementia raises its ugly head and announces the changes to the world.

My advice is to share any changes not only to your doctor but also the person caring for you. They want to walk with you, and you need to allow them.

October 23, 2016

I love this time of year. I love the smells of the upcoming holiday. I especially love driving people crazy with my enthusiasm. People say, what is wrong with that guy, he has dementia but he loves his life?

This is what happens when you find inner peace. You don’t have to impress anyone because you know who you are. You have come to terms with your future but most of all, you have learned to love.

That doesn’t mean the problems of the world went away, you just don’t let them effect you. You took a long look at your life and when it is time to be judged, you are ready.

October 23, 2016

There is no such thing as a typical day in the life of someone living with dementia. The only typical thing may be, that it will be different. If you think today was bad, tomorrow may be worse.

My moods may change hourly and for no apparent reason. Living with dementia is hard but, caring for someone is harder. Someone, somewhere is trying to figure that out right now and until they do, we just need to make the most out of it.

October 22, 2016

I was once a printer for a major printing company during the “hot metal” days. When we converted to electronic printing in the 70’s, I started my education in the computer field and spent most of my career in the IT department, although I always considered myself to be a printer.

My love of printing continues to this very day and proof of this is the cookbooks I do every year. Alzheimer’s has stolen a lot from me but will never steal the printer inside me. I do not write the recipes but compile them from the members that post them in a support group I run.

This year’s cookbook is the seventh I did and always made it available for free. This year is no different and will be in several formats so you can download it to your PC, Kindle or tablet. Out cookbook is now 711 pages and we still have a month to post recipes before I release it the first week of December.

I’m always asked how I handle living with dementia and I tell them I stay active doing a variety of things I love. I refuse to sit around and wait for the day when I enter my life stages. You may think I am running away from Alzheimer’s, and you are right.

October 22, 2016

Will a cookie cutter approach work when dealing with dementia.? Will one set of rules and regulations help with raising dementia awareness? Or is dementia so diversified that different rules may apply to different people.

Guidelines are set to do just that, help you decide. Guidelines explain from different angles solutions to a problem; they never force an opinion on you. They give you the tools to make an intelligent decision.

Sounds so simple but that is not the way it is in today’s world. These are the words you can and cannot use when speaking with someone living with dementia. This is the way someone living with dementia acts. Most organizations use the cookie cutter approach when explaining dementia.

Times are changing and we now believe everyone living with dementia are different. You cannot compare two people living with the same form of dementia. There are similarities but there is also something that makes them unique.

October 21, 2016

I am often asked why I get so excited during the Christmas Holidays and I love answering. This is when I can freely give myself without looking for anything in return.

I can slip away into my “workshop” and make the gifts that I give away. Not only does this give me a warm felling but it is also therapeutic for me. I work my brain for the designs and my hands to make them.

Music is a big part of my life especially Christmas songs. The melody of these songs not only sooths my fears but allows me to escape into the pleasant memories I still have.

I never forget the true meaning of Christmas nor do I leave the stresses of the holidays overcome me. I can escape the horrors of your world and enter into this magical world I live in. I become Willie Wonka.

October 19, 2016

Today, I turned four more candle holders, raised a little hell and got caught up on our FMN Cookbook. Basically I had a pretty good day. Hazel is ramping up to return to work full time and I’m stuck trying to keep out of trouble.

I have so many woodworking projects lined up that doesn’t need supervision to do. Most of my turning is done when Hazel is with me, but the hand sanding and finishing can be done while she is working.

Last night the power was off for a couple of hours and my anxiety went up. I don’t mind sitting in the dark with candles burning, but the quietness gets unnerving. First thing she does was get my headphones and sets them beside my chair encase I want to listen to music.

October 18, 2016

Does your head hurt? I think it does. Is it bad? Yes, it is killing me. Take a pill and it will make it better. The power of suggestion will decide what someone living with dementia is thinking.

You may plant a thought or unconsciously suggest something and we will go along with you. I may not have a headache but may rub my head trying to form a thought and the first thing you think of is, he must have a headache.

I wish I knew what stepping outside the box means, I just know those words are used often when caring for someone with dementia. The rules are so different in each of our worlds.

October 18, 2016

Health care is going up and people are beginning to feel it in their own pockets. We have been taking about the rising cost of health care and what it will be doing to our country for a long time.

The cost of caring for someone with dementia will one day bankrupt our country if something isn’t done. Maybe now is the time to turn our focus away from emails and groping and try to find ways to deal with the raising costs of healthcare.

Maybe the next Presidential Debate.

October 17, 2016

What a crazy week this is going to be, several days in the 80’s then in a day or two, the high will only be 52 degrees. The weather often depicts what living with dementia is like. Several days that are really nice, and a day or so that is just miserable.

Just like the weather, I have found ways to deal with the ups and downs. When it gets chilly, I put on a sweater, when my moods shift, I may play music or if possible, I go outdoors to shake the blues.

Whatever the weather or dementia throws your way, there are ways that will help you. Sometimes you just need to look for them.

October 16, 2016

Don’t tell me what to do. I’m only trying to help you. How many of those types of discussions do you have in a day while caring for someone with dementia. Or maybe, I can’t even go to the bathroom without him/her following me.

My favorite is, if you ask me one more time, I’m going to scream. Have you ever noticed that these things never bother the person living with dementia, only the poor soul caring for them?

We living with dementia only want to make your life miserable, or so it seems at times. Dementia is hard on everyone, especially the people that are caring for us. You helplessly watch the decline and in most cases, we don’t even know it’s happening. It is my belief that regardless how much we complain, all caregivers would do it again.

October 15, 2016

We can’t do this alone. Living with the disease of dementia is hard enough without thinking, we don’t need your help. Advocating for awareness or lobbing for funds for a cure, it doesn’t matter how strong you feel or how powerful you may be, you need the help of others.

You not only need people to keep you anchored to your beliefs, but also people to argue with you to keep you committed. I am so blessed to have both, although at times I could use a little less from one of them.

As I advance down the road of Alzheimer’s, I am more committed in seeing a World Without Dementia. I get involved in more projects ignoring the advice that I need to slow down. Care before a cure is more important to me and the message more and more advocates are spreading.

Will I ever see a World Without Dementia and the answer is a simple, YES I will. I may be looking down with a tear in my eyes, knowing that finally we came together.

October 14, 2016

Whew what a week. I now understand what Patty feels like after she runs a 100-mile race. You are tired, mentally exhausted but ready to do it again. This week consisted of several talks, Memory Cafes and an Italian interview.

All week was dedicated too northing but raising dementia awareness. I was in my prime and anxious to get that microphone and tell what life is like living with dementia.

If we can reach enough people to talk to, I know the changes we are seeking, will be made. Every talk we do leads to more people that needs to hear the voices of people living with dementia. Take advantage of every good day and this week, I did just that.

October 13, 2016

Here I am today, speaking at the Toni Finn Dementia Symposium at Willow Valley in Lancaster PA, raising Dementia Awareness.

 

October 12, 2016

I am one of the first ones to try to claw at someone’s throat when they try to tell me how easy it is to live with dementia. Living with dementia will never be easy but you can find ways to make it tolerable.

You can learn how to make the most out of the good days and ways to not step off the cliff when you are having a bad day. Everyone living with dementia has those occasional bad days and that is the focus of my advocacy.

This is when our message is Hope. Most don’t listen to me when they are having a good day, only when times are hard do they understand what I am trying to say.

Frustrations and fears are at a low on good days and we better deal with our life. On the bad days, we need to hear the words of Hope and look for the hand being offered to help us back up.

October 11, 2016

The path you are walking on, where is it going? Do you even care or do you just want to keep walking. You get to decide what path you want simply by changing your attitude.

You may be on the wrong path and end up someplace you don’t belong. Your actions play a direct role on which path you will go. Choose carefully and know where you are going before you take another step.

October 10, 2016

Watching the Presidential Debate last night, viewers were shocked and outraged at the hostilities being shown. Isn’t that terrible some of the words that were spoken.

Sure was but I’m getting used to hearing that kind of hostilities, it is directed at me all the time. Why on earth would anybody talk to you like that, especially someone caring for someone with dementia and knowing you were diagnosed with dementia?

The answer is simple; I am not as bad as the person they are caring for. We hear that kind of trash talk all the time, especially if you are trying to raise dementia awareness. People want you be in the end stages and if you are not, you are either faking it or misdiagnosed.

Our society accepts this kind of talk and even make excuses for the person talking like that. Everyone wants change but doesn’t want to look at themselves.

October 10, 2016

When you are living with dementia, you are always waiting for the other shoe to drop. After having a string of some of the best days I had in a long time, it is only inevitable that the darkness will come. I am not kidding myself, my Alzheimer’s did not go away or did I find something magical to beat it.

Something will trigger it and there is nothing I can do to prevent it. Whatever happens, I hope I can adapt to it and get on with my life. There is no balancing act between the good and bad days. You can’t just wait on something to happen but it is always in the back of your mind.

Living with dementia you learn to make the most of the good days because you know things will get worse.

October 10, 2016

What a busy week lies ahead of me. Every day this week, except today, I will be at either a Memory Café or speaking at a dementia event. I feel so alive spreading the word and raising dementia awareness.

I know I may be pushing myself but the rewards are worth it. I get to tell my story and give Hope to so many living with dementia. I will be walking in the pits of dementia and trying to help those get out of it.

If I see the sparkle return in one set of eyes, any stress I fell will be worth it. It is so wonderful being alive and making a difference.

October 9, 2016

Evan though I have dementia, I love getting into a lively debate. Yesterday I accidentally walked into a political discussion on Facebook and felt like I did 10 years ago.

It was a discussion that remained respective and no one raised their voices. I don’t care or understand politics but it was the thrill of the game that excited me. Once again I was in a battle of wits not knowing what I was talking about.

It became a game of one liners knowing that no one was going to be called the winner. The topic was not the issue but trying to outwit the other person became the game.

Thank you Rick Phelps for helping me be the person I was years ago. People with dementia can be in a lively debate, but they are not trying to prove a point, they are only playing a game.

October 8, 2016

I try not to get involved in politics, not because I don’t care, but because it proves how divided our country is. When we talk politics, the only thing we care about is how bad each of them are.

I want to know what they plan on doing about the financial dementia burden facing our country. We should be concerned about Health Care reform and less on the trash that is brought up daily.

The amount of trash will decide this election not what will happen to our country. I am anxious to see if the next Presidential Debate is based on the issues facing the country or what trash has been dug up on each person running for office.

October 7, 2016

Tears come to my eyes when I hear of people isolating themselves because they are ashamed of what dementia is doing to them. They don’t want to be seen in public because of the shame they feel that they brought to their families.

They are so afraid of what someone will think about them or about their slurred speech. This is dementia and what it is doing to us. You only think about the things we forget or the skills we may have lost. You may never realize the emotional damage that is being done.

Socializing is one of the most important concepts if you want to live well with dementia. You can’t take a pill; you only need to find the right people to socialize with. Most times these are the people living the disease or the people caring for them.

They walked in the trenches of your fears and understand them. This is why I am fighting to get Memory Cafes located in every city and town. Everyone has their own opinion how a Memory Café should be run. In my opinion, they are not a support meeting with speakers. There is no need to keep us occupied, they are simply a place to socialize and talk with others living with dementia.

October 7, 2016

How do you convince someone living with dementia that they have to leave the safety of their home because of a natural disaster? We may not realize the dangers if we do not evacuate, we only see that you are trying to take us away.

I wonder how many decide to “ride out the storm” not because of the thrill of it but because they cannot comprehend the dangers. When an evacuation is called, do they ever consider the mindset of someone living with dementia?

October 7, 2016

What do you say to a group when you are sitting on a panel and only have 20 minutes to say what it is like living with dementia? There are questions and answers but still not enough time.

You become a lobbyist and try attempting to influence decisions made by officials in a government, most often legislators or members of regulatory agencies. In other words, you work the crowd telling your story.

This is the only way, we living with dementia, will get the changes that are needed. I am learning to work the crowd in a positive way, and get those changes. It’s going to take more than me, we need to get United Against Dementia.

October 6, 2016

I was asked to sit on a panel at the Alzheimer’s Disease and Related Disorders forum on Wednesday, November 16, 2016 to be held at the Radisson Hotel in Camp Hill.

We are trying so hard to have our voices heard at these forums and I was honored that the Alzheimer’s Association recommended I be on the panel. Here is where we can talk about what it is like living with dementia and what policies need to change.

Hearing from the “horse’s mouth” carries more weight than any text book and I plan on making our voice heard.

October 5, 2016

Problem behavior comes out differently with people living with dementia. Anger is one of these behaviors that may be triggered and you have no idea why. Here are some tips that may help our care partners eliminate some of these problem behaviors.

1. Try to put yourself in the person's situation. Look at your loved one's body language and imagine what he or she might be feeling and what they might be feeling or trying to express.
2. Ask yourself what happened just before the problem behavior started? Did something trigger the behavior? Try a different approach to see if that changes the reaction.
3. Are the patient’s needs being met? Is the patient hungry, thirsty, or in pain?
4. Does changing the environment or the atmosphere help to comfort the person?
5. How did you react to the problem behavior? Did your reaction help to soothe the patient or did it make the behavior worse?

October 5, 2016

When I look into the eyes of someone living with dementia, it is like looking into a mirror. Unspoken words are passed between us and I can feel their fears. I know exactly how they feel because I spend every day of my life down in that dark hole with them.

So much can be learned by looking into their eyes. They may try to hide from you but to us living this disease, they can’t. We all have the same fears and we recognize them.

We need to stop the tears and walk away from our fears. Live in the moment that I am living in, and enjoy whatever time is left with me. Cherish the moment of recognition because I need you to walk with me until the end.

October 5, 2016

I’m sitting in my chair, looking out the window, enjoying the beautiful fall day we are having. Should I be worried about the bad weather we may be getting or should I just enjoy the moment?

Now let’s look at my life, I’ve been living with the diagnosis of Alzheimer’s for 12 years, and today I am enjoying that fall day. Should I take advantage of my good day or should I be worried about my future?

I can’t predict the weather nor can I say for certain what my future will be like living with dementia. So many times we overlook those good days, preparing for the bad.

October 5, 2016

In Pennsylvania, nursing facilities are now being rated not on the quality of the facility but rather the quality of life they offer. It has long been my belief that the most luxurious of nursing facilities may not have the best of care.

More people are beginning to view the quality of life as more important than a cure. We need a cure but helping us live with the disease is more important until a cure is found.

October 4, 2016

I get upset when you tell me that I just don’t care about anything anymore. That is so untrue because I may be losing the ability to care or is it that the things you see as important, are no longer important to me.

So many myths concerning dementia are still around that causes frustrations when caring for someone living with dementia. Not caring is one of them. Knowing what I am dealing with Alzheimer’s, should help you understand why I cannot get upset over everything in my life that you think is important.

I developed a natural “safe place” that protects me from the ups and downs in my life. It’s not the fact that I don’t care, I’m protecting you and me from getting angry.

October 2, 2016

I feel like a new man. I’ve been working very hard compiling the recipes posted this year in the FMN Recipe group into a cookbook. The cookbook has grown to over 150 pages and will be ready to download, free of charge, around December 1.

I am doing this for many reasons and one of the reasons is very selfish, I am doing it to exercise my brain and push myself to climb another mountain. I am beginning to lose my computer skills and making this cookbook is helping me to retain some of those skills.

You ask me how I am doing so well and I can’t thank the medication. I am doing so well because I push myself to be better. I never think I can’t do something simply because I have Alzheimer’s. I have faith in myself and want to motivate you into doing the things I do. Living with dementia for 20 years is going to be common.

October 1, 2016

What will it be like when I enter into the late stages of Alzheimer’s. From what I hear, it is pretty horrible to watch but what will it be like for me, living with dementia?

It is a pretty smooth transition for me, but painful for you watching it happen. I will be spending more time in my safe place where I now visit and leaving the world that you live in.

You will lose contact with me, but I will have moments when you will once again be walking with me. It is the cycle of life and one that I have made peace with.

September 29, 2016

Walking down the path of dementia I stop and pick up what appears like Hope to me. After closer examination, I discover it is only false Hope and toss it aside. What exactly is false Hope?

These are the promising cure’s we hear about almost on a daily basis. They stop short of being a cure, only to confirm that very little can be done for us. They lift our spirits then breaks our heart.

Many cannot believe I don’t get excited every time a new promising breakthrough develops. Over the last 12 years, my heart has been broken so many times that I now believe a cure will never be in my reach.

Stop showing me false Hope and show me ways to live with my disease. I will gladly support research that helps us live a better life.

September 28, 2016

The past several days I wrote about the hurt and humiliation that get inflicted on us living with dementia, but it is time to move on and talk about other topics. Dementia is not all doom and gloom, you can enjoy your life perhaps until you enter your late stages.

Someone is bound to reply that there is no enjoyment living with dementia. That may be the case for them, but not for me. You must realize I am looking through the eyes of someone living with the disease and not caring for them.

I found inner peace that so many are not able to do. I know my disease is terminal but so is life. I don’t fight the changes but I adapt to them. I have my pity parties but someone is always there to put an end to it.

I know my time is limited. but I vowed to make what is left, the best days of my life. Your attitude is the difference between enjoying life or being miserable

September 28, 2016

Have you ever felt the loneliness that breaks your heart, or makes you cry?

Have you ever watched the sun go down in blazing colors?

Have you ever woken from a nightmare drenched in sweat and shaking from fear?

Have you ever forgotten the person you love most in the world?

Have you ever wished the pain would stop?

Have you ever stood on the edge of a cliff, on a beautiful cloudless day, knowing that if you take a step the worries of your loved ones would be over?

I have, so don’t ever doubt my diagnosis of dementia, of the Alzheimer’s type. You don’t know me or what Alzheimer’s is doing to me. You only know the person you are caring for and try to compare them to me.

Have you gone through 6 hours of testing to determine your capacity and understand what those results mean? If you didn’t, why are diagnosing me without knowing the results of my testing.

Most are saying, Harry just let it go, but I can’t. I need to reach and educate what it is like living with dementia so they will understand and hopefully ease the pain they have.

September 27, 2016

Do you ever wonder why someone living with dementia wants to isolate themselves from the outside world? It is a common problem that we all share.

Socializing is so important to a healthy life but many of us just want to retreat into our safe place. I will let you figure out if it is just part of the disease or are there other reasons behind this nature.

September 27, 2016

September is World’s Alzheimer’s Awareness month and I have learned so much this month. A women gave me hell and attacked me simply because in her eyes, I was doing so much better than her husband that is living with Lewy Body Dementia.

Another woman attacked me calling me a fraud because I am able to write and speak intelligently. Several others joined in saying that if I truly was diagnosed with Dementia of the Alzheimer’s type, I could never do the things I do.

Still another woman told me she has worked in a care facility for a number of years and never came across any residents like me. She added that most of them cannot even form sentences. The month is not even over and the knowledge I came across is amazing.

Don’t try to figure out what I have learned, let me tell you. People are stupid when it comes to understanding dementia. I have been trying to raise awareness so hard over the years, that I just want to through in the towel and let the next generation figure it out. This generation, never will.

September we tried to work harder in telling our stories and bring realism to dementia but the emotions and frustration that go with caring over shadow the need and want to understand dementia through the eyes of someone living it.

I’m not complaining because I have reached and supported thousand by the responses I get. You think I am a self-centered pain in the ass that borders being a fraud, you will be disappointed to hear that I am not giving up on you, or any of my Forget Me Not groups and especially the Memory Cafes I attend. You will still see me on TV, on the radio and in the newspapers. You may even come to one of the talks I do.

I am a Dementia Awareness Advocate/Volunteer, living with dementia of the Alzheimer’s type, until the last stigma and myth has been destroyed and hopefully we will be closer to a cure.

September 27, 2016

I look through the eyes of someone living with dementia, that is the only thing I see. I don’t pretend to understand the reaction of care givers because we are so different. My opinions are based on 12 years living with Alzheimer’s.

I never say I am right, only that these are my thoughts. In my mind I am right but that may not be necessarily correct. I think, walk and talk like someone living with dementia but the day will come when you understand what I am trying to say.

You may think I am walking the same path as you, but you are wrong. Each of us are different and that is so hard for people to understand. You may try to pull me from my path onto yours but you won’t be able to. Alzheimer’s has claimed my body, but not my soul.

September 26, 2016

I read over my blog for guidance and the messages I received from literally hundreds of people in our dementia community to realize I get more support then what I give. We care and don’t hesitate to offer a hand when one of us falls.

People that may disagree with me, offered their support and encouragement not to give into Alzheimer’s and carry on with my work. The World of Dementia is composed of people willing to take a break from their own problems and help me back up.

I know there are pitfalls with any form of dementia, but as I progress, they are more personal and harder to climb out of. I stood on the edge of my cliff, and wanted to give up, abandon my dreams and let nature take its course, but so many hands were offered and I can’t, it’s not my time yet.

There is no way to say thank you for that kind of love. I will mend my heart and God will give me the strength to follow my dream. We are United Against Dementia and walking together to end ALL forms of dementia.

September 26, 2016

I am being tested. Right now I hate being an advocate for dementia awareness. It hurts so much being active and able to tell you what it is like living with dementia. So many despise me because God has given me the abilities to explain my thoughts on what my life is like.

People say the cruelest things and call me the foulest of names simply because I am not in the end stages of the person they are caring for. They have no idea that their loved one’s disease is destroying them, they just feel that someone needs to pay for their suffering.

They don’t consider the suffering I am going through, just what they see. They don’t even realize how cruel they are being; they just feel better because they were able to vent. They show no remorse or offer apologies for the pain they caused.

They are unwilling to find help or learn about the disease because dementia is destroying them and they are letting it. I hate it because I have to be kind and compassionate and walk into the shadows feeling the hurt they caused.

Caregivers wake up, can’t you see what dementia is doing to you?

September 24, 2016

I encourage everyone living with dementia, to tell their stories but almost every one of them refuses because they are afraid of the hostilities a few caregivers will show toward them.

If you are not like the person they are caring for, you are a fraud and don’t have dementia. I have the most respect for the people that care for us, but you always run into a few that know nothing about dementia, and try to diagnose you. I have never been disrespected by someone living with dementia, but by so many that try to strip my dignity because I am not like the person they supposedly care for, that appear to be, in their end stages.

The beginning part of the year I stopped posting in a group I created called Forget Me Not because of the hostilities a few members shown toward me because I am not in the end stage of my disease. I can still speak and write so in their twisted minds, I can’t possibly have dementia.

Several days ago, I started to once again post my thoughts in some of the various FMN groups only to be verbally attacked by one or two caregivers that called me a fraud and a “dick” because I found the secret to living beyond my diagnosis.

I understand why people living with dementia do not want to tell their stories because of the disrespect we get in one of the safest groups on Facebook. No matter how many times you walk in the Hells of dementia and all the lessons you learn along the way, ruthless caregivers can still find a way to hurt us. They do it simply because you appear, in their eyes, living better than the person they care for. I have to wonder what kind of care they give. The lesson I learn was only post in groups that understand dementia and are willing to walk with you.

September 24, 2016

Get off your high horse and step down on the path, we living with dementia, are walking. We are walking not only to raise funds but to end all forms of dementia. When you walk with me, I don’t want your money, I want you to open your mind and listen to that awareness I’m trying to tell you.

During the walk, we may both shed a tear watching the people walking with us. You will not only see the Hope within the crowd, but also the fears that we are living with.

At first you may think that I possibly do not have Alzheimer’s, but if you walk with me, you will feel the emotions I live with. I will give you Hope, and tell you how I climbed my mountains and told Alzheimer’s, I have Alzheimer’s, but you don’t have me.

Let’s walk together not only to end Alzheimer’s, but every form of dementia.

September 24, 2016

I weep because I lost so much in my life. Things I treasured, never to be found. You may ask, if you lost them, why not look for them? The things I lost can never be found because I have no idea how to.

You may be thinking that that is the dumbest thing you ever heard. Why not just backtrack until you find them? The problem is, I have very little short term memory so I have no way to backtrack.

Dementia is the degeneration of your brain that leads to physical damage being done to the brain. If the damage is being done to the part of the brain that holds the memories of you treasures, they will never be found, They are lost forever.

September 24, 2016

My life reads like a book. Chapter one starts the day I was diagnosed with dementia of the Alzheimer’s type. It starts there because that is when my new life started living with dementia.

The more you read, the more you begin to understand the path I am following. Each chapter tries to explain the changes that are occurring and how I fight to adapt to them. Many chapters are happy and some are even funny.

Then you come upon a chapter where I travel through the darkness on my path. Here is where the true feelings of dementia are being told. You cannot hide the fears you have or hide from the fact that you are scared.

I am a born story teller and have a need to tell my life story. I have no idea if I will be able to finish my tale but “while I still can”, my goal is to tell you what it is like, for me, to walk the distance in my journey to a better life.

September 22, 2016

Why does the medical profession believe that if we are not in the end stages, we don’t have dementia? I was told a story yesterday about a woman that was being tested and her doctor told her to draw a cross, which she did. After that she was told she didn’t have dementia.

When she question him, he told her that he knows more about dementia, then she ever will. So many red flags flew up which made me so angry. Many of us are thankful for the caring doctors we have, but many more are not so lucky.

We are trying so hard to break down the stigmas and myths concerning dementia that it may be time we teach the medical profession.

September 21, 2016

What does Death with Dignity mean to me? It means being able to travel the road of Dementia without the stigmas and prejudices that go along with that disease. Living the length of my dementia without pity and being offered a hand when I’m down.

Not taking any short cuts and not being ashamed to say, “I have dementia”. Holding my head high until it is my day knowing I am living with dementia. So many other meanings, but this is what Death with Dignity means to me.

September 21, 2016

Experts predict a cure for Alzheimer’s is years away, we say we need it now. A cure means so many things to different people and I can’t even begin to explain what a cure would mean to me.

I pray when a cure is found, it will mean that no one will ever go through the suffering that we do. I wouldn’t expect a magical return of all the memories I lost and the removal of all the horrors I have seen.

I was taught many lessons in life since I was diagnosed, and so many of them were taught in the darkest of time. A better quality of life and easier ways to live with Alzheimer’s is what I fight for.

September 21 is pronounced World Alzheimer’s Awareness Day in hope of bringing awareness to dementia, but my World’s Dementia Awareness is every day and will be until I die. Join us today in volunteering to raise Dementia Awareness.

September 20, 2016

What does it take to stand by me? If you are a caregiver, you realize how difficult that can be at times. You think you know me, but then dementia changes me, I become a person that you may not recognize.

Doesn’t matter, you will still stand by me. You may get upset with me at times, but help the person that tries to harm me. You may get to understand me, but you will never get to understand the dementia I am living with.

You are doing your best, and in the back of your mind, you question whether you can be doing more. We living with dementia have someone that stands by us and I often wonder if the people caring for us has anyone standing by them?

Do our care partners have someone that is standing by them when they are walking in the dark side of dementia. Is someone holding their hand, or are they crying alone?

September 19, 2016

Let me shine, let me be the me that is me, instead of who you want. WOW, when I read this, I knew right away I had to write something about this. How many of us living with dementia try to say that without being able to put it into words?

You don’t see me shining because you expect someone else. You want me to do better not knowing I can’t. I see the disappointment in your eyes when I don’t live up to your expectations. How I wish you could only see the me that is me.

September 17, 2016

Today I was listening to a Silver, Wood & Ivory Adagio Christmas CD with one foot in Heaven. I know it is too early but I don’t care. Their music takes my mind to the most peaceful of places.

Music will do that to a person especially if they are living with dementia. For some reason it unshackles the restraints in your mind and allows your thoughts to wonder across the universe.

You have to try music therapy to calm your anxieties and slip into your inner peace. Once you find it, it will become your favorite place to be.

September 17, 2016

Somewhere over the rainbow is the life I am seeking. Peace, harmony and everyone loving each other. No more living in fear, just sitting on a fluffy cloud gazing at all the beauty that was created.

I know my world exists and someday I will find it. Until then, I will continue in this world and dream about my magical world. Next time you ask me what I am thinking about, you will know.

September 16, 2016

I was asked once by Alzheimer’s, why aren’t you more like me? How come you are not miserable and afraid from what I am going to be doing to you? You should be afraid and lost your will to live.

I stood proudly and answered because you are nothing more than a degeneration of my brain. You are not me; you will not prevent me from doing the things I want to do.

You may share my body, but you better believe, I am driving this boat.

September 16, 2016

I hear all kind of stories of why I hate dementia. Most are from caregivers who explain why they feel that way. Dementia is stealing their loved one from them, and they are powerless to stop it.

We living with this disease have the same feelings but we don’t hate what is happening, we mourn the loss. I know I will be losing bits and pieces of my life but I have no room for hate in my heart.

I need to stay focus on staying alive and staying in the now. I have no room for hate.

September 15, 2016

Every now and then we get a reality check and it surprises us. I talk all the time about the changes in our lives and how to adapt to them. There is nothing that can hold us down, except reality.

My reality check hit me hard today although I knew this day was coming. It was a simple thing but a milestone in my life. At the time I was the only one that understood what happen.

Hazel and I was shopping at Home Depot and made a small purchase and I told her I would pay for it. At the checkout I pull out a couple bills from my wallet to pay for my purchase and found out that wasn’t enough.

She showed me what I gave her but I could not figure out how much it was or what else I needed to pay her. Hazel helped me out and we laughed but we both knew at the time, I lost another part of myself that I cannot adapt to.

September 14, 2016

Another wonderful Memory Café at the Lancaster Health Campus tonight. We are not just a social gathering; we are changing lives. We are not just breaking down the stigmas of dementia, we are removing them completely.

We have found the formula to make people believe in themselves even though they are living with dementia, they are finding a true meaning in their life. We cannot erase the fears in their lives, but we can help them find ways to live with them.

I had this dream that people are helping each other understand the life changes they are facing and overcoming them, can be done without medication to mask the horrors of their dementia.

Lancaster General Health gave me a platform to try out my theories and we developed a program that is changing lives. We may be living with dementia but we tell our stories and maybe face our fears amongst others and get rewarded when they tell us how we changed their lives. Thank you God for giving me the guidance and strength to carry out my dreams.

September 14, 2016

What is the one thing that scares you the most about living with dementia. If you are living with the disease or caring for someone that does, your answers may be quite different.

They are similar in the fact that we answer with personal feelings, how this disease is affecting us. When I am asked this question, I respond, I am frightened the most concerning what will happen to my loved ones that I leave behind.

Our care partner may say, what will happen to me. They know that I will be loved and taken care of, but will they. Dementia is a horrible disease that effects everyone that comes into contact with it.

September 13, 2016

It may be a miracle that I am doing so well living with dementia, but what you may not understand is the hard work on my part, that needs to be done. After 12 years of being diagnosed with Dementia, of the Alzheimer’s type, I can speak and write fairly well.

Maybe that means that Alzheimer’s is not yet damaging the part of the brain that controls those functions or maybe it is the process behind how I write. My thoughts are my own but I rely on spell/grammar checkers to insure everything I write will get me a passing grade from my English teacher.

I write from my heart so there is little thought process needed to write a blog. I work very hard with socializing and talking to others living with dementia so I don’t isolate myself from the world. I learned most of the things I know about Dementia by living with it and talking to others that are also living with dementia.

When you investigate why I am doing so well, you will find out how hard I am working to stay alive and raise awareness toward Dementia. In my book, that's not a miracle.

September 12, 2016

Every day isn’t peaches and cream when you are living with dementia. You have days when you entertain the thoughts that living with dementia isn’t that bad or maybe the silly thoughts that your diagnosis may be wrong.

You never think about the days when you sit around with a blank stare or get irritated because someone invades your thoughts. This doesn’t mean that you can’t live a meaningful life, you just need to stay realistic.

It’s a hard, long road with many twist and turns before you reach that inevitable end stage. Decide early when you start walking on this road if you are going to ignore what is happening or if you will make a new life living with it.

September 11, 2016

I read with interest a letter to the editor in our local newspaper concerning the drumbeats of Death with Dignity beginning to be heard in Pennsylvania. Having a passion of giving Hope and teaching never to give up, I was curious to read what the writer had to say.

I read the reasons why we should not play God and take one’s life but I realized she left out all aspects of compassion. My religious beliefs tell me that this is a sin, but sins can be forgiven through compassion.

There are times we need to “put down” our pets with tears in our eyes but we do it with compassion. I honestly can’t give you a diffident answer although I know which way I lean.

I stood on that breakdown ledge and just wanted the suffering to go away but a voice told me it was not my time. What if that voice never speaks to me?

When I think of Death with Dignity, I think of end stages of any disease where there is no possible chance of surviving only pain and suffering. This is when my battle with compassion goes into play.

September 10, 2016

I will be remembered as the old guy sitting on his old wooden bench under the shade tree, drinking a hot cup of coffee, gazing up at the cloudless blue sky. That is how my neighbors see me every day.

Me and my buddy Jade spend endless hours outdoors letting time slip by us. I have dementia and don’t need to be kept busy all the time. Some will argue that I should be kept busy to keep my mind sharp.

Reality is that you are taking away my freedom by having me do something, when I need time to think about my future and find that inner peace that will carry me through the bad times ahead.

It is hard to watch me, in your mind, wasting away. How do you explain how I came to terms with my dementia and enjoy my life. No medicine is capable of doing that.

September 9, 2016

Does she love me like she used to, or see the man she once saw? Crazy thoughts unless you are living with dementia. Our insecurities drive us to some of the most unfound fears, but to us, they are real.

Our disease takes us to a place where we doubt everything around us and we can’t tell what is real or not. Our care partners do their best to prove their love and when we don’t respond, they feel like they failed us.

Understanding dementia is so much more then caring for us. It’s understanding the insecurities we are going through are in our mind and not in our heart. We know in our hearts we are loved, but the disease in our brain no longer understands these emotions.

You can’t fix it, so don’t waste your time. Understand we know we are loved, maybe we no longer remember or comprehend what is was like.

September 8, 2016

Yesterday when I was young is becoming more clear in my mind and the things I do today is so easily forgotten. I’m told that is because my short term memory is not being saved.

My mind is sharp when it entails recalling memories of my childhood and growing up into manhood and that seems to be ok with me. I vividly remember my fly fishing days and my buddies hanging over the side of the boat when we went deep sea fishing.

I remember the feelings I had when I first saw Hazel and what she did to me. I vowed that someday she would get to know the real me and find a lasting love, that was over 50 years ago.

I know that I no longer remember things but it bothers the people around me more than it does me. The scariest part of dementia is just a part of my life, I’m just trying to keep walking for as long as I can. Somewhere inside me I will know what is around me.

September 7, 2016

I haven’t seen any major changes in my life until today. I’m beginning to stumble more. Not because I am dizzy but because I lose my balance more. My medications haven’t been changed and my blood test seem to be ok. Blood pressure is fine along with my sugar count.

That leaves my Alzheimer’s. After being diagnosed over 12 years ago with dementia, of the Alzheimer’s type, I can’t complain. I’ve gone through some major life changes but I’m still capable of putting a smile on someone’s face.

I should be upset with the things I’ve lost, because I remember doing them but no longer remember how. We lose the ability to do something and never realize it until someone reminds us we no longer can do it.

I have learned so much since I was diagnosed like, how to be scared and what being alone is really like. I also learned how to face my fears and there are days when I have to walk alone. That is when I realize that I am ever so slowly losing my battle with dementia, of the Alzheimer’s type.

September 6, 2016

Why am I so concerned with the string of wonderful days, I’ve been having? I’m just waiting on that proverbial shoe to fall and ruin my peace and quiet. My sleep has been peaceful without any nightmares and I hesitate with making any changes in my life.

When things are going so smoothly, living with dementia is not so bad. I’m a realist and know the bad times are not over, they may only be on vacation and waiting for the right moment.

There is no such thing as remission when you are talking about Alzheimer’s. You thank the Lord for the good days and struggle through the bad. I have so much planned for the future that I don’t have any time to fall in a dark hole. We got awareness to spread.

September 6, 2016

Maybe I under estimated the number of tiles that needed to cut, or the shortness of my work day, because Hazel is limiting the hours I am working, but my two-day bathroom project will be three days.

I will be finish with the tiles tomorrow, and amazingly there is only one paint strip left taped to the wall which indicates that Hazel narrowed it down to one color to paint the walls.

We have found the secret to complete a major project without the frustrations and lose of interest to complete. I’m not looking for another indoor project because the outside yard will be needing to be prepared for winter.

Hazel and I work well as a team and as long as my coffee cup is full, I’m happy.

September 5, 2016

Labor Day holds a special meaning at my house. All the chores that I put off all summer must now be done. The first is to finish the bathroom project. We all remember the plumber fiasco and the plumber revoking my plumber license and making me promise never to think about doing any plumbing by myself ever again.

Well, several months ago we got the tile for the shower but for some reason I can’t think of, I never put it up. Well since it’s Labor Day, there is no more stalling in the Urban household, so down with the old and up with the new.

I figure this is a two-day project then I only have to paint to call it complete. I want everyone to know that I am being blackmailed by Hazel, she told me no thinking about Christmas until my chores are done.

September 4, 2016

Why me Lord, if I was never diagnosed with dementia, I may have been able to accomplish so much more. Next thing I know I feel a sharp pain in my head reminding me that I am doing what was planned for me.

It doesn’t take long to learn not to doubt your future and just do what you are supposed to be doing. I never plan ahead, I’m better at flying by the seat of my pants. I always seem to find the answers and the guidance to do my work and don’t need to think about it.

All of us dislike having dementia, but to me, it is the best thing that could have happen to me. I have found the peace that many will never see.

September 3, 2016

Like sand in an hour glass, so are the days in our lives. Here it is September and I’m still buying plants for my flower beds. Today I bought two more ornaments that needed a home in my garden and Hazel reminded me that in a couple weeks we will start to clean out the flower beds.

Where are the days going? Kids are back in school and brown spots are beginning to be seen in my yard. I’m going to fight it, I don’t care how many leaves fall in the yard, I’m not ready to rake leaves.

I don’t know if it is just me but where did summer go? It is still hot as heck but September reminds me of fall. Mother nature is telling me to loosen my grip on summer and think about long pants again but I have so many more bug bites yet to get.

In a blink of an eye, this latest heat wave will be a thing in the past and how cold it is getting will be the topic we are taking about. The seasons will change, but will living with dementia be any different?

September 1, 2016

The general belief is that you need to be rewarded monetarily for your hard work. We all want to be paid for the things we do, but what if you are a volunteer? They also get paid for the hard work they do but it certainly isn’t in money. To them, what they receive in return could never be bought at any price.

Volunteers are those special people that give of themselves not looking for anything in return. There is no amount of time that is required to be a volunteer, just a willingness to lend a hand to someone that needs it.

Someday just drop what you are doing and find out what other volunteers have found. A whole new world may open up before you.

August 31, 2016

What a difference you made in my life. Words that give my life meaning and removes all the fears and concerns of the future. We all have people in our lives that are making a difference and helping us understand what our future is like.

When we are diagnosed, we sometimes don’t want to admit how scared we are and then we meet someone that has the ability to change our lives. Was it luck or was that person supposed to be there to offer help?

I often write that it is my belief that God is using me to seek out and help those living with dementia. I could never find the right words to say on my own, but it appears like we are making a pretty good team.

Everywhere you look, someone is making a difference. It gives me hope in my dream of a World Without Dementia. Join me and make a difference in someone’s life.

August 30, 2016

I had to write this because I am reading so many posts on Facebook that Gene Wilder never disclosed his diagnosis of Alzheimer's

Unless you have had the drama of being diagnosed with some form of dementia, you have no idea the impact it has on you. We owe it to no one whether we disclose it or not.

We can do away with the stigmas of dementia without forcing people to disclose their most intimate of feelings. Everyone wants to hear the gory details so they can better understand what we are going through.

Nobody wants to be publicly stripped search but thinks it is perfectly ok to force us to stand before a crowd and discuss what is going to happen to use. We are not advancing dementia awareness if we think we should divulge personal information that we are not comfortable talking about.

What is so hard to understand that some are uncomfortable with standing up and saying, “I was diagnosed with dementia”?

August 30, 2016

If I was living with dementia and never told you, then died from the complications of Alzheimer’s, would that make me a bad person for not sharing that information? Would you feel betrayed or understand my need to protect my dignity and privacy.

This often happens to celebraties that die from some form of dementia and we wonder why they never added their name to our cause. Everyone is different and their wishes need to be honored.

Not many can open their souls and give the public what they are asking. Some just want to keep their illness private and not talk about it. I fully understand because I am living with it.

August 28, 2016

We carry so many emotional scars that will never be seen. We’ve been telling our story and the fears we have and the fears we are living with, for many years. We open not only our heart but our sole in a way that should never be seen.

The return we get is snippets from unknown people that cut into us so badly it leaves an emotional scar. Our supporters rally to defend our integrity but the unseen damage is done. Our honor is upheld at a price no one can imagine.

I call this emotional abuse but others see it as fair play. I finally get a chance to speak out on elder abuse this coming Tuesday on Alzheimer’s Speaks Radio. Join us so we can collectively bring elder abuse to the limelight and discuss ways to stop it.

The emotional scars we carry may never go away, but maybe ways can be found to prevent anymore from happening.

August 26, 2016

I am so tired of dealing with the family and trying to understand this crazy world we live in. I want to slip back into the world of dementia where I feel safe and live the days I have left.

Sounds like depression but it is not. It sounds to me like a man that gave his all and is finding out, it’s not enough. Maybe I lost the will to fight and only want peace and tranquility in my life.

I have so much I want to do in life but the bumps in the road are getting bigger. Most would keep their inner thoughts to themselves but how would you know what is going on in my head if I didn’t tell you.

This will pass and the fire in me will return, but until then I need to learn how to balance the ups and downs of living with dementia. I’m not alone because the person you are caring for, may be fighting the same battle. Don’t try to fix it, give us a little space and let us work it out. That doesn’t mean abandon us, it means take our hand and walk with us and not say a word.

August 26, 2016

It never ends, the emotional abuse our children dish out to us never stops. They can’t wait until we are dead before they take what they think is rightfully theirs. In their minds if they don’t take anything they can get their hands on now, it won’t be there after the medical bills are paid.

Kids now days don’t give a damn about the people that raised them, they are looking for a handout so they don’t have to work for the things we did. I can’t speak for all kids but I can about one of mine.

Laws need to be changed to protect all elders. I’m going to be told that there are laws protecting us but they aren’t working. We need to not only prove our cognitive ability but the property rightfully belongs to us. After we do, they walk away and we are left with the emotional damage.

Laws need to be changed, the people causing emotional or physical abuse needs to be punished. He will forget is not an excuse for the heartaches you are causing. So many families hide the abuse because they are afraid of causing more trouble, not me, sue me, I’m ready.

August 25, 2016

I get upset with people that speak out on dementia without paying their dues and learning the lessons that dementia has to offer. Maybe I’m getting cranky but you need to cry with someone living with dementia before you know why they are crying.

You need to learn the symptoms and emotions of all dementia’s and the only way to do that is to spend time talking with them. Unfortunately, you need to walk and spend time in the Hells of dementia before you can talk about it. You need to stand on the edge of that cliff before you know what real fears are.

Now don’t get me wrong, I’m not talking about the caregiver that tells you what it is like caring for someone, but those that profess to be experts on the disease and try to make a name for themselves.

I live in the world of dementia and can tell a phony from a mile away. I encourage everyone to speak out on what it is like living with dementia and tell their story. If you hear enough different stories, you begin to understand the World of Dementia. Every one of us is different and may view what we are living differently.

August 25, 2016

Two years ago today I wrote this post and I looked back how much has changed in my life. I walked many miles on the path of dementia, and I've lost ground in my fight but one thing has not changed, and that's my dream.

I’m a dreamer, always have been. I never dream of becoming rich and famous but I do dream of a better life for every single person living with Dementia. I dream of neighborhood Memory Cafes on every corner of the block wherever you go. We will have Memory Cafes online 24/7 so we will never be alone.

I dream of being free without being fenced in. We would never be caged in like animals to prevent us from wandering. We would be able to roam our paradise without restrictions. All our cities and towns would be dementia friendly.

Most of all, we would never be embarrassed or afraid to say, I have Dementia. All the stigmas and social embarrassments would be gone. We would realize that there is life after diagnosis and we are still the person we have always been.

We know we have limitations but they would not stop us from trying new things and getting back the pride we once had. I dream big but as long as I have faith and hope, my dreams will become reality.

August 24, 2016

Yesterday we had an interesting talk on Dementia Chats. The topic of how technology could improve the lives of someone living with dementia and the small number of apps that is available to us. The group talked about what type of apps they thought would be beneficial to us and the need to have them.

The wonderful thing about Dementia Chats is that they always discuss the pros and the cons on the topic being discussed. At times there is a stinker in the group that may disagree with the majority and yesterday it was me.

I believe technology is handicapping us not helping us. We no longer have to think for ourselves, we have a app to do that for us. We never have to remember anything because we have a app that will do that for us. Everything is at our finger tips if we know what to ask.

Most apps are designed to keep us in the world we no longer understand and most times, we have no idea how to use them Technology is great but it is expensive, most living with dementia cannot afford it. We rely on technology and when it fails, we have no idea what to do.

I know I may be in the minority but if someone did not disagree with the majority, no one would be looking for a better way.

August 23, 2016

I’m always talking about what life is like living with dementia that I forget what my life was like prior to my diagnosis, or do I? I was working 12-14 hours most days, 6-7 days a week. The stress of my job was dragging me down not knowing if my time was running out and I would be laid off from my job.

It seemed I could never catch up and on my days off, there was always chores that needed done around the house. My life was awful and I couldn’t wait until the day I retired.

The day came and I retired but shortly after came the dreaded diagnosis of dementia of the Alzheimer’s type. That is when my life took a turn toward the better. I was forced to slow down and my hectic life started to fade away.

I found a new life that suits me and I find joy living in it. Do I thank all the years that I worked so hard or my diagnosis of dementia for the riches I have and the skip in my steps?

August 22, 2016

Have you ever heard the expression, sitting on a bench and watching the grass grow? That describes me when I’m sitting out on my bench. There are many descriptions of freedom and being free, but the freedom I feel, is the freedom that nature offers.

I am free when I allow my mind to wonder. Have you ever heard two squirrels arguing over a tasty meal they found or the various songs that birds sing during the day?

Or maybe lean back and wonder what is on the other side of the clouds you are looking at. Are they as pretty on that side as the one I am looking at. That is the freedom I have, I am no longer bound by the worries of the world.

You look at me knowing I have Alzheimer’s and feel sadness because I am losing so much and will continue to lose until there is nothing more to lose. Unknown to you I was set free and offered whatever life I choose to have. There are some that don’t want to be given the freedom I have and want to stay in the world they always knew. That is ok but I want to learn the secrets that the winds are offering.

August 21, 2016

When I was told I had dementia of the Alzheimer’s type, my breath was taken away from me. What in the world am I going to do ran through my brain? All my thoughts and feelings turned inward and I couldn’t stop thinking about what will become of me.

That was over 12 years ago and I can tell you what happen to me. I found purpose in my life and started a new wonderful life. I think I have accomplished more meaning things in my life since I was diagnosed with Alzheimer’s than ever before.

I found a happiness that I never knew existed. I will not deny that living with dementia is hard and very scary at times, but the purpose I found lifts me up and carries me through the hardest of times.

I found people willing to put their life on hold to help me. Not everyone is as lucky as I am, but the purpose I found is helping to change that.

August 21, 2016

Here it is drawing toward the end of August and the “ber” months will be on us soon. The kids are starting to go back to school and my summer plants are dying in my garden. The temperature is falling out of the 90’s and we have promises of being in the 70’s.

The seasons will be changing along with my life. I may not be spending so much time in my back yard chatting with my neighbors but will be spending most of my time sitting in my chair and looking out the window.

I’m not sad summer is slipping away because I also love fall. The changing of the color of leaves is breath taking and reminds me that everything needs to take a break and rejuvenate so they can once again bring joy to the world. Nature teaches us lessons if we want to learn.>/

August 20, 2016

Am I dreaming my life a way, a question I always ask myself? It seems I spend so much of my time dreaming of a world without dementia and how we will ever get there, that all my time is spent doing just that.

I can’t think of a more worthwhile dream to occupy my thoughts. Just because I’m living with dementia doesn’t mean I can’t dream about the future. My disease does not prevent me from being a part of the future.

So many think our life is hopeless and we lose the ability to care. We are no longer the dreamers of the world, but someone that’s need to be cared for. That is so untrue because not only can I see my dreams becoming reality, I am starting to live with the changes that is bringing a better quality of life to all of us.

I’ll leave the worries of our disease to others and spend all my time dreaming of all the wonderful changes that await us. A World Without Dementia awaits us.

August 20, 2016

A friend wrote me and asked me if I ever forget that I have dementia. I thought about it and realized that most days I do forget I have dementia. You never have the luxury to totally forget about your dementia because something always reminds you about it.

I am so at peace in this new world I am living in that I don’t even think about it any longer. You have to be willing to forget that you have dementia before you can live comfortable in your new world.

I know and accept the changes that are occurring so there is no need to analyze them. When you find your peace, you forget all your worry’s and live within that peace.

When you write a daily blog on my thoughts on dementia, it may appear that you are consumed by your disease and can’t think about anything else, but in reality I am just writing about my life and what it is like.

I was born to be a story teller and telling you about my life is what I do. In my mind I am telling you a story about my life, not the medical condition of my life.

August 19, 2016

Reading the newspaper this morning I looked at the 7-day weather forecast and saw that the temperature for next Monday and Tuesday may only be in the 70’s. I wondered if the heat wave was breaking or was it signs of what is coming.

This often happens to me when a sudden change occurs in my life, is this simply a bump in the road or a sign of things to come. Most times I jump to conclusion and think, whoa me, times are going to get rough.

Just like the weather forecast, the signs I see for my future, may be wrong. Weather forecasting is a scientific guess using the facts that are available just like my diagnosis of dementia and what my future may be like.

I am my own personal weather gauge, if I want to know what the weather is like, I walk outside. If I want to know how my day is going, I ask myself.

August 17, 2016

What is it like when you don’t see the flowers anymore, only the darkness? Living with dementia this happens quite often. Most times it doesn’t last long but when it does, your world falls apart.

The feelings of hopelessness overcome you and you lose the true meaning of life. There is nothing to fight for so you just drift along. Words can’t help you and may make it more difficult. You are alone and it is up to you whether life is worth fighting for.

Slowly the light peaks through and you are able to crawl out. You never look back you only try to put distance between you and the darkness. You just had a bad day and are looking forward to a good day knowing you will be seeing the darkness again.

Alzheimer’s is supposed to be a forgetful disease but why are we always able to remember and recognize a bad day.

August 17, 2016

I’m sitting in my chair with the faraway look in my eyes and when I return, Hazel asked me, where were you? I don’t know how to put it in words but I was in a long ago memory.

Sometimes when I’m relaxed, a memory comes to me that sweeps me away. It is real to me and takes me back to relive that moment. It is so nice and much better than the original.

It seems to me that only happy memories have the power to pick me up and allow me to drift back to a pleasant time in my life. I love reruns and some of my memories are the best.

August 17, 2016

When I say huh, or what’s that, the other person automatically turns up the volume thinking I can’t hear them. That may be the case in some instances, but in others it probably means that the words you are speaking are not registering with me.

You may be speaking too fast and not giving me the time to process what you are saying or maybe your sentence is so long and I can’t keep up with you. So many things may be causing me not to “hear” you and the trick is to find out the reason for it.

Once you find out the reason I also say huh, you can adapt to it and take another step into my world.

August 16, 2016

I was as happy as a kid that was given an ice cream cone when I open my email to find a coupon from a local nursery for a free $2.49 mum in celebration of my birthday. Of course Hazel had to take me right away to pick up my free plant.

Unbeknown to me, the nursery was having some tremendous deals on the stuff they sell. My mouth dropped when I saw all the bargains I could get. I grabbed two patio chairs, a holly tree that wanted to be adopted and three larger mums because the free one was just a baby.

Then I picked up several other items when Hazel asked me if we were going to be able to get everything loaded in our car. Like a magician, I got everything loaded and on the way home I realized I never got my free plant. Doesn’t matter because I’m happy.

August 16, 2016

Often times I am guilty of thinking everyone is on the same wavelength as I am. I write a post that appears totally logical to me but to someone else it may be totally different.

That bridge may never be crossed for someone living with dementia and someone caring for us to completely understand each other. I often say I can’t read your mine not thinking that the reverse is also true.

We are lacking in communication skills when it concerns talking to someone with dementia. We are getting better at it because we now know it is a problem and are becoming more patient.

August 15, 2016

After living with the diagnosis of dementia of the Alzheimer’s type for over 12 years, how much more is there to learn about this disease? I walked in the valley of dementia and seen the horrors it created.

I shed so many tears that I’m all dried up. I felt hopelessness and often lost the will to live. Then something happens and I want to learn more. I’m granted my wish and something changes in my life and offers me a lesson to be learn.

I need to learn more so I can better help those living with dementia. I need to feel the pain before I can describe it to others. I can’t rely on others telling me how they think it works, it’s just not the same to me.

There are others like me that have a need to understand dementia, the price to learn this is high, you need to live it to understand it. Many look up to us but for us, we are only trying to learn more. We work hard not to live another day but to learn more and pass on what we have learn to others.

August 14, 2016

Today I found out that a heat advisory is the same as damn hot. By now you should know that words and being political correct drives me crazy. Say what you mean, and mean what you say works for me.

I used to ask the kids when they were growing up, why are you dancing around? It wasn’t because they needed to use the bathroom but they were trying to think what to say. I would say, just say it.

There were times I was sorry I said that but at least they did what I told them. Being cranky, is so much fun and passes the time.

August 14, 2016

I’m sorry. Two words that are easy to say until it becomes your turn to say them. We often think that we should have said those words, but never do. Why is it so hard to admit that maybe we were wrong?

I sit in my chair and try to figure out human nature but can’t. Maybe it’s because I am part of human nature and make those same dumb mistakes. Why in the world did I ever do that, often comes to mind.

We do so many stupid things and the amazing part of it is that we may not even know we did them. When you get old, and suffer from dementia, the craziest things go through your mind.

August 14, 2016

Go with the flow, easy to say but so hard to do. It’s against human nature to go with the flow. There always needs to be a reaction to any action. Little bumps in the road need to be cleaned up and not just run over.

When you do go with the flow, you appear to not care. It seems to be a losing battle. Caring for someone living with dementia demands that you learn the lesson of going with the flow. You cannot react to every change or bump in the road and survive.

Our lives changes quickly and so must yours to adapt to these changes. Temperament will decide whether these changes affect you or not. Try going with the flow and see if caring becomes easier.

August 13, 2016

Robert Bowles keeps reminding me that a house is built one brick at a time. I’ve been building my house for 12 years with no end in sight. I want to reach more people to let them know that there is Life After Your Diagnosis.

My window of opportunity is limited, and I want dementia awareness to take giant leaps instead of these little steps I always hear about. I want to celebrate with you the day a cure is found for all forms of dementia.

I want to see more advancements made for a better quality of life for everyone living with dementia but most of all I want to spend time in the house that I helped build.

August 13, 2016

Can someone with dementia jump up and click their heels? Probably not, but the feeling of clicking your heels is felt by many. Doing something you thought you may not be able to do, gives you that feeling.

Waking up with a clear head and anxious to start the day makes you want to jump up and click your heels. Unfortunately, our care partners may never see these feeling because so often they don’t last that long.

It doesn’t matter because we felt the joy and although we may not be able to tell you about it, for a moment it felt good to be alive.

August 12, 2016

When I speak. I always get favorable responses to the Do’s and Don’ts of dealing with someone with dementia and I’m asked to write a list. Here is a short list I use and could add so many more, but these make a good topic to throw in the conversation.

DON’T

• Don’t try to reason or argue with someone with dementia. They are able to last longer and you will walk away frustrated. You will never win an argument with someone living with dementia. In our minds we are always right.
• Don’t confront us because we see that as a form of aggression and react to it. Most times not in a good way.
• Don’t remind us that we forget. When you say, don’t you remember, we don’t, and only get reminded that our memory is failing.
• Don’t question recent memory. Try to refrain from asking me what I had for breakfast or what I did yesterday because my short term memory may be fading and once again I may get agitated.
• Don’t ever take what I say or do, personally. The filter in my brain may not be working and what I say, may not be what I mean. Now if I was always an obnoxious person, this may not apply.

DO’s

• Give short one sentence explanation. I get confused with long sentences.
• Allow plenty of time for comprehension. I understand what you are saying but need extra time to process it.
• Always repeat instructions or sentences exactly the same way. If you change them, they will sound different to me.
• REDIRECT, the most important word to learn. Many heartaches can be avoided if you redirect an issue in a different direction and not try to explain your point of view.
• Leave the room, if necessary, to avoid a confrontation. This is more a safety tip, because dementia causes us to have short fuses at times, and it is possible we could lose control and get verbally or physically abusive.
• Respond to the feelings rather than the words. Half the time I have no idea what I’m saying.
• Be patient, cheerful and reassuring. Good luck with that.
• Go with the flow or suffer added stresses.
• Practice 100% forgiveness which is hard to do, because I can be a real jerk at times.

I could go on and on but this may give you an idea how to keep your sanity.

August 12, 2016

The light I am chasing may not be the light drawing me to a better life but one giving me purpose in my life. It is guiding me to the things that need to be done and giving me the wisdom and strength to get them done. Last night I stood before a group and poured out my stories of living with dementia and the response I got back was magical.

My stories are not medical in nature or the statistics of dementia, but true stories told from my heart. The group can relate to what I’m saying because they see the same thing in the person they are caring for every day. It helps them understand the crazy things we often do and say.

My light is helping me act out my dreams and hopefully passing on the light so others can follow their dreams. The message that dementia will not stop us from living the life we want, will be told forever.

 

August 11, 2016

Another talk today to people starting out walking down the path of dementia. We call our talks Living Beyond Your Diagnosis and is held at the Lancaster General Health Campus.

This talk will have three of us talking about what it is like for us to be living with dementia and how we adapted to the many changes that are occurring. Three people telling their life stories that are so different but having the same results.

Our goal is to provide the information we never had when we started out and give Hope to their life after their diagnosis. When people leave the room, I want them to think, if they can do it, so can I.

We can’t give advice about medical, legal or financial issues, but we can explain what is working for us and how we deal with our disease. The question and answer time is my favorite because the group has the opportunity to ask us anything about living with dementia.

We can explain to them what our life is like which they will never find in any book. Hearing it from the people that live daily with the horrors and found ways to live with their dementia is far more powerful than someone that wrote a book on what they observed.

August 10, 2016

Walking in a fog, what does it mean when we say. I’m in a fog. Some say that if you smear your glasses with vaseline that will simulate what it is like. That may be partially true giving you a sampling what it is like visually, but doesn’t give you a clue what the emotional part is like.

Being clueless may better describe it because all thoughts are cleared from your mind and you are walking aimlessly. Usually being in the fog is temporary and things begin to become clearer and you continue on with your normal life.

Most days I wake up in a fog and it takes me some time to get my biological clock ticking. I walk around stumbling and at times I get frustrated because I can’t focus on what I am doing. It’s all part of this wonderful world we live in, called dementia.

August 9, 2016

I feel like the King of the Road walking down the path of dementia. My good days outnumber the bad ones and my support system never fails to pick me up when I fall.

I know what lies ahead but also the good times I will have before I get there. I may get bumped around at times, but for the most part I see myself driving the boat. I may get tossed and turned and slapped with a giant wave at times, but I’m able to steady the coarse and proceed to where I am going.

For the moment, I am in control and feeling good about myself. It is not easy at times, but anybody can be King of the Road and be as happy as I am.

August 9, 2016

If it wouldn’t be so hot and muggy outside, I think I could really get into the Christmas spirit. Not the buying frenzy or the chaotic hustle bustle but the everyone is being nice to each other mode.

I was playing a cd of Christmas songs and feeling really good and decided to go sit outside for a while and enjoy the day. The first thing that happened was something bit me on my leg and the next thing I knew, I was slapping myself silly.

There went all my Christmas spirit and I decided to go back into the house and play some oldies on my cd. Maybe I am rushing the season.

August 8, 2016

Short term memory loss is the cause of so many wonderful blogs never being written. How can I write what it is like living with dementia when I turn around and not remember what I was thinking about?

It’s not that bad yet but if I’m sitting in my chair and something comes to mind that I could write about, and I’m distracted by something, that thought may be lost.

It gets frustrating because I’m a story teller and not able to come up with any current ideas and not forget them. I’m stuck in the 60’s with nowhere to go.

August 7, 2016

In another’s eye, they see living with dementia quite differently than we do. They constantly remember us the way we once were and not the way we are today. They have a hard time getting over the decline they see and it breaks their hearts to watch us struggle.

We on the other hand also see the decline but accept it because we understand what is happening to us. Often times we are not given the credit of understanding what is happening to us and you feel the need to carry the load.

We know, but may not have the capability to process what needs to be done. We want dignity and respect but may not be able to explain how you can help us achieve that.

I often wonder if we will ever fully understand the complexities of living with dementia. Sometimes we want to protect you from seeing and feeling what we feel and think it would be better if you never knew.

August 6, 2016

When you are living with dementia, the good days are very good. We smile, laugh and don’t let the symptoms affect us. Our life has purpose and people are happy to see us. They come and visit and everyone has a wonderful time.

Then our world crashes and we fall into the depressions of dementia. We don’t smile any longer or laugh anymore. We feel so alone and scared even though we are surrounded with people that love and support us.

You recover somewhat from your low, but in the back of your mind you know that the rug will once again be pulled from under you and you will once again fall into some form of depression.

Anticipating what lies ahead is the hardest part with living with dementia. Not only for you, but for the people caring for you. It is so unfair that we have to live with this hanging over our heads, but one thing you can count on is, someday the bad days will return.

August 5, 2016

The gentle reminders of the damage that Alzheimer’s is doing slapped me in the face yesterday. Several months ago I got a new computer with all the bells and whistles that a person with my computer background would ever want.

The past week or so I started to have problems with my CD drive. I’ve used it before so I didn’t think the drive was at fault. I spent the week before I went on vacation trying to use my expertise and try to fix it.

I reloaded drivers and checked the register for any errors without it helping. I exhausted myself researching the internet on ways to fix my problem. During vacation, Hazel told me to stop getting frustrated because it was still under warranty and we would take it back and have it repaired.

Yesterday without thinking, I put in a CD and it worked. The CD drive sits in the computer vertically and not horizontal like I’m normally used to, so I took the CD out and looked at it and put it back in and this time it did not work. Taking the CD out again I realized that the problem was that I was putting the CD in backwards and that is why it did not work.

The moral of this story is, I have been working in the computer field all my life and now I am losing those skills. Now don’t tell me not to be so hard on myself because that could have happened to anybody, dementia does this ever so slowly.

August 4, 2016

Tony Bennet may have left his heart in San Francisco but mine was left in Williamsburg, Virginia. My back hurts and my legs are killing me, but other than that, I feel great.

I am ready to tackle all the injustices in the dementia world and raise the flag for dementia awareness. Now that that crap is out of the way, it is good to be back home and continue to report on my life living with dementia.

I think we get so used to the ups and downs of dementia, that we need a change to remind us that there is a life beyond your diagnosis. Going back to Williamsburg helped me to mentally replant my feet and enjoy my life.

It may not be Williamsburg that excites you, it could be anywhere. You will know when you found your place, because time will stand still and the feelings of contentment overcomes you.

I don’t feel sad when I have to come home because those feeling will be with me until I return.

July 29, 2016

Dementia will not wait until you are ready to deal with it, it is a degeneration of the brain that does what it can, whenever it can. I know so many that chose to ignore the symptoms associated with dementia until they have lived with the disease for so long that they now have problems dealing with it.

They may never be tested by a doctor because they think that they may have Alzheimer’s. So many times the problems they are having may be due to some other medical cause that can be easily treated and they worried needlessly.

If the diagnosis comes back determining some form of dementia, the world is not over but just beginning. Now you can plan on how you are going to live with your diagnosis and not just sit back and let it have its way with you.

If you never did it before, you will now. It’s time to put on your game face.

July 28, 2016

I think early detection of any form of dementia is important and upon being diagnosed, a pamphlet called Living Beyond Your Diagnosis should be given to you which would explain the changes that may occur, but more importantly, give you Hope. Of course there is no pamphlet written, but there should be.

So many problems could be avoided if the person had a better understanding of the disease and got off on the right foot. I often speak on my life living with Alzheimer’s and the things I’ve done to adapt to these changes.

When you get diagnosed, so many wrong thoughts go through your head that need to be stopped. Telling you everything will be ok will not make that walk down the dementia path easier.

July 28, 2016

I just finished mowing the yard and I’m sweating like a pig. What is the first thing I do, well of course, I grab a hot cup of coffee and retreat to my bench under the tree.

We all have a safe place to go to, where we can just get away from the world around us. I don’t feel the heat sitting on my bench because my brain is telling me this is where I want to go and be by myself.

Living with dementia, we often escape into our world where that boogey man can’t get us. Hazel often wonders why I don’t come inside and sit in the air condition but at this moment, I need to escape my thoughts on dementia and sitting in my safe place is the only place I can go.

July 27, 2016

I really dislike statistics. Some people like facts and figures but not me. This is especially depressing when you are talking about dementia, it appears like the deck is stacked against us.

I know for fact that we are outliving these statistics, but for someone just starting out on this journey, it has to be scary. I would rather hear real life stories and let the numbers fall to the bean counters of the world.

Every time I attend a talk on dementia and watch the power point presentation, I see these awful statistics. I want to stand up and scream, but how about us, don’t you have any statistics on us living beyond our diagnosis.

That is when I think, why ain’t I the one speaking? This is why I started to speak out on living with dementia. Not to minimize the hardships but rather to give my real life experiences. It seems to be working.

July 27, 2016

Today we are going to have a special two-hour Memory Café at the Lancaster General Health Campus where a lawyer that specializes in elder law, is going to speak to us and answer any questions we may.

We are so lucky that Lancaster General Hospital will organize speakers that we think would benefit the group and donate the use of their auditorium for this function.

We usually don’t have speakers at our Memory Café and the hospital allows additional times outside our normal meeting and space to include the large crowd we expect.

The Alzheimer’s Association is working with me to create more Memory Cafes in Lancaster County and with the help of willing organizations, we will have a Memory Café every week of the month in various locations. Our hard work is paying off.

July 26, 2016

Having to prove you have dementia is like being told you have an ugly baby. You know it’s not true but those words hurt so badly. I’m so often told that I’m not like someone’s loved one and I say, hell no, don’t you know everyone living with the symptoms of dementia is different.

You may care for someone for 10 years and know that person’s behavior, but you still only understand so little about dementia. That is why it is hard for some to understand the stories we tell because they never ran into that circumstance.

It’s a learning process and I understand this. It is the people that refuse to listen to me and try to make me prove what the medical profession has already proven, that upset me.

I and others wrote so much about this that you would think by now people would have learn to listen and not make you defend what they don’t understand.

July 25, 2016

It’s a scorcher outside today. Hazel and I went out to weed the flower beds and it is nothing like sitting under my tree. I was soaked and only wanted to relax under my tree so I went inside to grab my Ipod and came out just carrying the ear buds.

I told Hazel I think I lost my Ipod and she asked me where I lost it at. I gave her my best dumb look and said, if I knew where, it wouldn’t be lost would it. She replied, don’t yell at me and walked away. Sounds awful familiar doesn’t it?

Anyway we searched all over the yard and on the patio and didn’t find it. She asked me where I had it last and I told her I remember last night charging it. We promptly went inside and there it sat, fully charged. This is why I never charge anything because it always ends up lost. Blame it on the heat because I don’t see how it could be me.

July 25, 2016

I don’t remember things and that doesn’t bother me, it’s not like I’m going to stay up all night worrying about the things I forgot. If I forgot them how would I know I should be concerned.

Living with the symptoms of dementia for so long, it doesn’t bother me anymore. If the boogey man was going to get me, it would have long ago. Living with Alzheimer’s can’t hurt me anymore because I won’t let it.

Maybe I no longer realize the pain it throws at me because the pain becomes part of me. I don’t moan and groan like I once did although Hazel tells me I can give a pretty good impression of whining. It is so easy to live with Alzheimer’s when you are having a good day.

July 24, 2016

It is so hard living with me. I should get mad but I don’t or maybe I get mad for no reason at all. Time has no meaning to me and when we are late for something, I can’t understand why everyone is so edgy.

Someone is telling me their problems and I laugh because that aren’t problems but mere annoyances. My priorities are nowhere close to yours so if I don’t jump and down when you tell me something, don’t get upset.

I get bored and lose interest very fast so don’t take me on a shopping trip. Other than that, life with me is a hoot.

July 24, 2016

Yesterday I gave Jade a bath or maybe she gave me one, I’m not sure. She enjoyed it so much she couldn’t wait to roll around in the dirt. Hazel was yelling at her because we just gave her a bath and I was laughing like a fool.

Most days it is like a zoo at my place. You learn very early to go with the flow and just enjoy whatever happens. I can no longer get excited over the little things in life because they happen not to agitate me but to entertain me.

Hazel always asks me if I ever take anything serious and I just say, I don’t have to, I have Alzheimer’s. Living with dementia is all about what you make of it.

July 23, 2016

Can you tell when someone lost Hope? Sometimes it is easy to see and other times it is almost impossible to see unless you experienced that feeling. You walk around with a smile and pretend everything is ok and cry when you are alone.

You never reach out for help because you don’t want anybody to know, so you just put on your smile. Then one day someone, possibly someone you never met, breaks the ice and offers their hand.

You have no idea how they know how you feel, but you feel comfortable and safe talking to them and open up with your fears. It doesn’t happen overnight but you have found a dementia mentor.

I like to call them peer to peer talks and I promise you, you will be hearing more of this in the future. It is all within the purpose of my life.

July 23, 2016

From the Inside Out, this is a phrase a dear friend of mine Richard Taylor used that was branded within me. It is a reminder to me that I have to be honest with myself and speak from my heart.

Any other way will prove you are a phony and have not learnt the lessons dementia has to offer. Walking down the path of dementia I get slammed with some of the ugliest lessons to learn, but ones I have to learn to be able to speak from my heart.

I fall into some of the deepest, darkest holes that would make some simply give up and give into their disease, but I was taught that every hole I fall into and get out, is because I needed to learn the lesson being told.

I exit stronger and that is why I can say that I am stronger now than before I was diagnosed. I don’t look for holes to jump into but when I do fall, I know there is a lesson being taught.

I am thankful for the medication I take and the support I get, but I need to speak from the Inside Out and the only way I will be able to do this is walk and live in the pits of dementia.

July 22, 2016

It’s hot outside, I heard we are under of extreme heat wave for the next couple of days. Doesn’t matter to me, I have a need to sit on my bench, under a shade tree with my morning cup of coffee.

I guess I’m like the mail carrier, weather doesn’t affect my schedule. I hear Hazel telling me not to stay out to long and stay hydrated, and I say ok, not knowing what that meant.

She tries to push water on me knowing I prefer a hot cup of coffee, but with a smile on my face, me and my coffee venture outside. It won’t be long before summer is half over and I need to take advantage of every minute of it.

I need to get ideas for woodturning projects and get back into woodworking. During the summer, I usually take a break and enjoy nature and the outdoors. I’m living with Alzheimer’s and enjoying every minute of it. With the right attitude, you can to.

July 20, 2016

The business of dementia awareness is growing with millions of dollars waiting to be made. So many ideas and products are becoming available that will make our life so much better, or will they?

So many of these products are geared to help the people caring for us and does nothing to ease the pains we feel. I love the products that try to teach us new skills or train us to live a better life, but drift away from the ones that promised a new life that will lead to a happier life.

Money can be made off of the people living with dementia, and people will find ways to make it. I often wonder what is driving them, do they even know someone living with dementia, or felt the fears we do?

When someone comes out with a new product, the first question I have is, why did you make this.

July 20, 2016

What a difference a day makes. Yesterday may have been gloomy but today it is bright and shiny. Living with Alzheimer’s for so many years, I have found out that one bad day isn’t the end of the world for me.

It depends on how comfortable I am with my life and how much I want the sun to shine again. You often hear the expression, don’t wallow in your self-pity and if you don’t, you should.

It’s a reminder that you hold the power to be happy regardless how bad your life appears. Find that happiness and living with dementia isn’t that bad. Only you can do that.

July 19, 2016

If I was given one wish that would grant me anything I wanted in the world, what would I wish for. My wish would be that I never had to make that decision. My life is peaceful and humble but one that I enjoy.

In my eyes I have everything I could ever want, but why wouldn’t I wish that I was cured from living with Alzheimer’s. This is the only life I know and don’t think I would be able live in the busy world that you do.

I know my destiny and a cure is not in it. I don’t have to wish for the strength to carry on because I gave up my life and He is guiding me. As long as I speak from my heart, I will be ok but when I think or plan it out, I get into all sorts of problems.

I spend so much time in the dark side so I can learn and help those living there. I don’t have or want any wishes because my life is what it was meant to be.

July 18, 2016

This Wednesday I will be speaking to a group of caregivers concerning what life is like living with dementia from my point of view. This is harder than talking to a group that is living with the disease because I have to step out of my world and back into theirs.

I have to explain my emotions differently because they are not living with them and it may be hard to understand. I love talking to caregivers because I feel they learn so much, not because of any wisdom on my part but living first hand with these emotions and feelings, and having the ability to explain them.

I can see it in their eyes when understanding takes place and my quest for dementia awareness is getting closer. This is why I promote talking and listening to someone with dementia so hard. The benefits to both parties cannot be measured.

July 16, 2016

I live in the world of dementia where I feel safe and understand everything around me. Every now and then I step back into the so called normal world and get totally confused.

This past week I decided to remove the playset we had in our backyard because it has not been used in years and would give us a more open yard. I called the borough office and asked if our trash hauler would dispose of it and they told me yes if the wood was cut down into suitable sizes.

I sawed up the wood and neatly stacked it in a cardboard box to dispose it over a course of several weeks. I put the box out with my weekly trash but found the box and wood still sitting there after the trash was picked up and called the borough office to see why the wood wasn’t picked up.

They told me if it was in a metal or plastic container they would dump it into the truck. I told her it was in a small cardboard that I could have reused the following week and was light enough to pick up and dump.

In a rather unpleasant voice she informed me since it was in cardboard they would not dump it because they don’t haul cardboard. I tried to tell her I didn’t want them to take my box because I could refill it the following week. In her, I talked to you long enough voice, she told me to put the wood in a plastic bag and they would take it.

I was going to tell her that dumping more plastic in the landfill was not going to help the environment but apparently the borough knows more than I do. I returned to my world of dementia because honestly, it makes more sense to me.

July 15, 2016

I met a person with tears in their eyes that was recently diagnosed with dementia and images of myself came flashing back from 12 years ago when I was diagnosed. I knew telling them everything would be ok is not what they wanted to hear.

I had to get this person to tell me his fears in order to try and help him. Unlike a doctor I am not trying to treat him but showing him that we all have the same fears and I can tell him how I dealt with them.

Listening is the best way to help someone because they must figure out how to help themselves. No one can chase away their fears for them, but we can pass on the information on the ways we tried.

Peer to peer conversations breaks all the barriers without the lectures. When the time comes, they will understand what I do and believe me when I say there is life after your diagnosis. You are happy you were able to help and move onto the next person.

July 14, 2016

So many times my thoughts on dementia get me into hot water but the day will come when I no longer will have those thoughts or able to express them. Until that day comes I will continue to speak from my heart in the hopes I don’t offend anyone.

Living with dementia has taught me how hard life can get and sometimes those thoughts surface and end up in my blogs. We try to stay positive and stay away from reporting the ugly dark secrets of dementia but when you come in contact with the hopeless faces living with dementia I feel we are not helping the very people that experiences the same things I do, that are unwilling or unable to talk about it.

I want my blogs or thoughts to honestly describe my journey living with dementia and share all my emotional ups and downs as a gift to the world. The world of dementia is cruel and ugly and meant to be read about and not lived in.

July 14, 2016

Have you ever noticed when it is stormy and raining outside, how dark and dreary it seems? Your spirits are down and you can’t wait for it to stop raining. Morning come and the sun is shining brightly and everything looks so fresh and colorful.

The world has not changed but how you are looking at it did. You are no longer looking at the dreariness but how the world really looks. Your mind determines how you see things and puts you into your mood.

When you fall into a depressing mood you may only need to change your thoughts to see the world as it really is. The beauty around you never goes away, you just may not be seeing it.

July 13, 2016

I’m sitting on my bench with Jade laying at my feet and a rabbit sneaks into the yard planning on enjoying a midmorning brunch in my flower bed. I watch the rabbit take a couple of steps and freezes before it moves closer.

It sees us sitting there and stares at us when it stops almost asking permission to eat my flowers. I am so engrossed in the rabbit that I don’t see Jade tensing up but she sits there looking like a statue.

It gets within 5 feet of us and poor Jade can’t control herself any longer and takes off after the rabbit. There is no way in you know what, that she is going to get that rabbit but God love her, she tries.

I laugh so hard at them and think Jade is so like me. She knows she will not catch that rabbit but by golly she is going to give it her best. I know I will see never see a cure for my Alzheimer’s let alone be cured, but that will not stop me from doing the things I love to do.

July 13, 2016

What are the warning signs of elder abuse?

While one sign does not necessarily indicate abuse, some tell-tale signs that there could be a problem are:

Bruises, pressure marks, broken bones, abrasions, and burns may be an indication of physical abuse, neglect, or mistreatment.

Unexplained withdrawal from normal activities, a sudden change in alertness, and unusual depression may be indicators of emotional abuse.

Bruises around the breasts or genital area can occur from sexual abuse.

Sudden changes in financial situations may be the result of exploitation.

Bedsores, unattended medical needs, poor hygiene, and unusual weight loss are indicators of possible neglect.

Behavior such as belittling, threats, and other uses of power and control by spouses are indicators of verbal or emotional abuse.

Strained or tense relationships, frequent arguments between the caregiver and elderly person are also signs.

Most importantly, be alert. The suffering is often in silence. If you notice changes in a senior’s personality or behavior, you should start to question what is going on.

Remember, it is not your role to verify that abuse is occurring, only to alert others of your suspicions.

July 12, 2016

After you have been diagnosed with some form of dementia, it is important to move forward so you can live beyond your diagnosis and live a positive and fulfilling life.

No two people deal with their diagnosis in exactly the same way. There is no right or wrong approach but you are the only one that can change how you feel or how you will spend whatever time you have left. You will have good days and others that will test your will to live.

Write down your thoughts and feelings about your diagnosis in a journal. Try to keep a record of the ways you are adapting to these changes.
Share your feelings with close family and friends. Speak open and honestly about your feelings. Don’t sugar coat your feeling but don’t lose yourself in the shadows.
Surround yourself with a good support system that includes individuals who are also living in the early stage of the disease and understand what you're going through.
Join an early-stage support group. It can provide you with a safe and supportive environment of peers. There are many and you may need to try several before you find the one that suits your needs.
Talk to your doctor if you or others are concerned about your emotional well-being. Your doctor can determine the most appropriate treatment plan to address your concerns. Don’t play doctor and try to “fix” yourself.
Seek help from a counselor or clergy member. He or she can help you to see things in a new way and help you understand more fully what you are feeling.
If you are feeling misunderstood or stereotyped because of your diagnosis, learn what you can do to overcome stigma. Don’t turn inward and keep your emotions hidden.
Stay engaged. Continue to do the activities you enjoy for as long as you are able. Unless it is unsafe, don’t let anyone tell you that you are unable to do something simply because you were diagnosed with some form of dementia. Learn your limits.
Take the time you need to feel sad, mourn and grieve. Putting on a happy face only works for so long.

July 12, 2016

Sticks and stones may break my bones, but words will never hurt me. Growing up we sang this song to let people know we were stronger than them. Now it seems like words do hurt, especially if you are living with dementia.

I must admit that I don’t get overly excited whenever a new list of offensive words to use with dementia comes out. I don’t have the luxury to be upset because I am spending my time fighting elder abuse and just staying alive. I would rather spend my time helping others and trying to make our lives more tolerable then fighting the battle of words. Each year hundreds of people I personally know die from the effects of dementia that words lose its effect on me.

Fighting the battle of words is honorable for some but I have been touch with the horrors of dementia and live with those horrors and feel my limited time is more benefit fighting the battle for Hope.

July 11, 2016

Yesterday when Patty and Keith came to visit we made plans for our upcoming vacation to Williamsburg, Va. For the last several years they have been driving Hazel and I down there the week of my birthday, since I no longer drive, and spending time with us walking around the place I love.

This year will be special because I start a new decade in my life and will turn 70 years old during the week. Patty already told me she has no intentions of pulling me around in a cart just because I think I’m getting old. We used to visit 4-5 times a year but living with dementia, it is best to stick with once a year. Every year I tell them the same historical facts about Williamsburg and they always pretend not to be bored.

We always have to visit the Yankee Candle mega-store and I have a chat with Santa Claus and stand on the bridge while it snows. They allow me to be my dementia self and do the things that make me happy. It is positively the best birthday gift I could receive, being in my fantasy world with the people I love.

July 10, 2016

Do you have the faith to carry on? Do you believe in something that will give you the strength to face the day? I live through days that I if told you about them, the wording alone would offend you.

We need faith to gather the strength and determination not to give into our disease. Will power is not enough, and you need to know something will help you. This something I call faith and could be religious in nature or anything else you believe is strong enough to help you.

You cannot fight dementia on your own, it is much stronger then you and will destroy you before you had a chance to begin to fight.

July 9, 2016

Lord I hope this day is good. Every day I start my day with this simple prayer and hope for the best. My days may be pleasant or a continuation of the nightmares I have at night.

I can’t think about anything else but what may happen to me. It’s not much of a life but the only one that Alzheimer’s is offering me. I never thought what my day may be like until Alzheimer’s entered it and showed me what it is going to be like.

It’s not all bad but when it is, you know that the day will come that is all you will know. Until that day comes, I look around for the next mountain to climb.

July 8, 2016

I was thrilled yesterday with the comments made on my post regarding over medicating persons with dementia. So many valid wonderful comments were made from all angles regarding this use of medications that it proves my view that more people living and caring for someone with dementia needs to be on the committees studying dementia with their common sense approach.

If more medical professionals were involved in the many chat sessions we have, they could learn so much by being quiet and listen to what we have to say. Our voices are being heard and we now need to gently sooth their egos so they listen.

July 7, 2016

When someone with dementia gets agitated, the first thing suggested is more medication. This will settle them down and make it easier to care for them. You are 100% right, by taking their life away from them they have nothing to be agitated with.

Won’t it be wiser to try to determine what is agitating the person and correct that before you comatose them to make your own life easier. So many care facilities are guilty of this because it is cheaper and they are lacking funding.

I hear many care partners say that after they doped up the person they are caring for; they were much better. Live the life of someone that is drugged up and then tell me have much better off they are.

Medication is fine for dealing with the symptoms of dementia but it is not curing us. Don’t put us in a daze until we die, find another way.

July 5, 2016

So many changes occurred over the years and I had to adapt to these changes. I no longer feel the threat of being in denial or being in the early stages of my disease. Alzheimer’s has its grip on me and we both know it.

I no longer feel the need to fight my disease but I’m happy with sharing my life with it. The rose colored glasses fell of years ago and I know what my future will be like.

I’m not bothered living with Alzheimer’s because this is the only life I remember. My inner peace is returning and God is answering my prayers. I am still the easiest person to be taken advantage of but I’m now surrounded by people that know that and will not let it happen again.

No one knows how much time I have left but I know I will continue to enjoy every minute of it. I was told the sun would shine again and it did. Each lesson in life I learn only makes me stronger.

July 4, 2016

Here it is July, what in the world happen to June? Hazel and I went to the garden center to get some more flowers and the tables were bare. I asked what happen and they told me it is getting toward the end of the season and they are sold out.

Next we went shopping to find they were stocking the store with winter items. I’m not ready for this but I’m told before we know it, winter will be here. Hearing this news, I got excited and asked if we could put up Christmas decorations and got shot down real fast, way too early I’m told.

Why are there always double standards in my life? We can buy a winter coat or snow boots in July, but I catch hell for playing Christmas music before Thanksgiving. I’m pretty sure it is not my dementia making it hard to understand this.

July 3, 2016

Walking down this path of dementia can get very lonely even though you are surrounded by people that not only love you but support you. Your emotions close in on you and your world is crushing you.

Your loved one grabs your hand and ask if you are alright and instantly you answer I’m fine without telling them that you are overcome by your disease. We have no idea how to explain the emotional fears we get because we are not in any pain.

Silently we suffer because we just can’t find those words to tell you how we feel. Better ways of communication must be found because we are losing the normal ways to do it.

July 2, 2016

You have no idea how good life can be until you walk on the dark side of it. After living with the diagnosis of Dementia, of the Alzheimer’s type for the last 12 years, I can honestly tell the difference.

In the shadows of life, you are breathing and not much more. You may see and feel things that may make you want to scream. You have no Hope and just want it to end.

Thankfully for me, I have been able to crawl out of the darkness and be welcomed back into the light. Living with any form of dementia is hard and unless you are living it, you have no idea how hard it is. My passion in life is to bring awareness to dementia and help you understand more than the medical side of dementia but also the emotional side that no one talks about.

July 2, 2016

Reading the newspaper this morning, I read a story about a man 82 years old that jumps out of an airplane not because he has to but because he wants to. He was inducted into the Parachutist Hall of Fame because of the number of successful jumps he made in the last fifty years. I guess the ones you don’t make doesn’t count.

Now why in the world would a sane man of 82 years old want to do that? I have trouble walking down steps without breaking my neck that I can only image what would happen to me if I would step out of an airplane. I have only praise for someone that follows their dreams whatever they are. Not giving up on the things you love makes for a happy life.

July 1, 2016

When you fall into one of those dark holes of dementia, you never return to the point you fell. There is always a reason why you fell and unless you correct the reason why you fell; you will fall again.

There are lessons to be learned at the bottom of that hole but we are so anxious to climb out that we never learn them. We have a tenancy not to learn the things that trip us and pass up the lessons life is trying to teach us. We want to get better before we know what is making us sick. When you fall into your dark hole and climb back out, you know you are losing. There is never a reason to celebrate.

June 29, 2016

Some believe there is no such thing as sun downing, but ask anyone with dementia and they will tell you differently. After the sun goes down our brains are over stimulated from the day and our body needs to shut down.

We are too mentally exhausted that our anxiety overcomes us and each of us may react differently. I lose my security and retreat into a safe place within my Alzheimer’s world. Others may want to go home where they feel safe. I don’t want to go to sleep because I know what awaits me. We wake in a fog, dazed and do it all over again.

June 29, 2016

I was reminded, do I get bitter or do I get better, the choice is mine. I don’t have to think what choice I want to make, I’m just not sure how to get better. Time is helping me get back on my feet but letting go of the anger is harder.

Controlling my emotions is thy only way I will regain the inner peace I was living with and enjoying the days I have left. Letting go of the things that bother me seems like an impossible task.

I turned my life over to my Higher Power and took it back to only find out that I can no longer deal with it. I had a taste of both lives and want my inner peace back. I will now let my dignity be guarded by others and let them handle it. I plan on sitting on my bench and accepting what God is offering me.

June 28, 2016

Rest in Peace, three words spoken when someone passes from this life, to give comfort to the person. How can we do this when we know the turmoil that we are leaving by our passing. Very seldom will anyone get a sample what life will be like after we are gone but we often see what it will be like before we die.

I pray I die in peace but I have doubts that I will. Spiritually I know I will find peace upon my death but there will be no peace for the ones I leave behind. What does it take to Rest in Peace when we die?

June 28, 2016

I often speak out to groups and everyone wants to hear my life story. Here is what I tell them.

My life story concerning living with dementia is similar but may be different than others living with this disease. While I was still working I knew I was having difficulties performing the duties that I have done for years and decided to retire from the job I have been doing for 38 years.

Upon retiring, I decided to have my hearing tested due to a considerable loss in hearing and the results were so bad that I was sent for a MRI to rule out a brain tumor. The results were negative but led me into further testing with a diagnosis of dementia of the Alzheimer’s type.

Like most people I went through the stages of denial, anger and over a period of time, I finally found acceptance with my diagnosis. It was not an easy journey finding ways to live beyond what I thought was a death sentence and found many of my friends and especially relatives have abandoned me and left me to fight my disease alone.

I got on the internet to learn about Alzheimer’s and at that time, only found information on the late stages. I never found the Hope I was looking for, nor ways to live a healthy, happy life with my disease so I decided to draw on my own life lessons and educate others what it is like living with dementia, not from a medical point of view but from the view of someone living with the disease.

I got my education in the Hells of Dementia walking in the darkness and living the fears that people with dementia share. Many times I stood with my toes overhanging that cliff trying to decide if I should step off and stop the pain but a Higher Power told me I would get the help if I told my story and tried to help others.

That was 12 years ago and since learn the life of living with dementia that you will not find in any book. I experienced the horrible darkness and fears we live with but also the nightmares that awaken us in the middle of the night in sweat and tears. I see and understand the anguish our care partners are going through watching us decline with no ability to help us.

I lived with the elder abuse family members inflict on us and the greedy motivations they have not willing to wait until we die to get what they can. Although my disease is terminal, I have found a passion to continue to endure whatever Alzheimer’s throws my way.

I share My Thoughts On Dementia and try to describe what it is like for me living with this disease. One of the hardest lessons I needed to learn was how people react to someone living with dementia. They can be harsh at times due to their ignorance of the disease.

I am slowly drifting away and I know it. I no longer remember the things that were once important to me but clearly can recall the things that hurt me. I plan on spending the remaining time I have on earth, breaking down the walls and removing the myths on how we feel living with dementia.

I will never see a cure in my life time, but hope to carry the message that there is Hope Beyond Your Diagnosis and you can live a happy productive life until it is my turn to pass the awareness baton onto others.

June 26, 2016

I’m sitting on my bench under a cloudless beautiful sky trying to find my inner peace that I lost. I worked so hard and found inner peace only to have it taken away. I’m trying so hard to let go of the things that were done to me but the hurt is still too great.

I know my depression is now the cause of my unrest and no amount of medication will help it. Time and my disease is telling me I will soon forget it, but my heart is telling me otherwise.

Outside people will never know the hurt and pain we go through. Some say that we don’t suffer because of our disease, but I will stand up and debate them any day they choose.

June 24, 2016

Yesterday I got a copy of the police report that my son and daughter-in-law filed against me to give to my lawyer. I read over it and have the confirmation I needed but one thing in the report simply broke my heart.

My daughter-in-law stated to the police that they haven’t spoken to us in five years and I remember it well the last time we spoke. I recall it like it happened yesterday, it was Christmas Eve and we went there to try to mend fences but were told to leave.

My heart wasn’t broken because they no longer want to speak to us but the fact that they prevented us from seeing our grandchildren since that time. We requested to see the kids several times over the years but were refused. My guess is that if I ever saw them again I would not remember them nor would they remember me.

Elder abuse of this type needs to be stopped but if they were forced to let us see our grandchildren, those kids would feel the wrath of their parents. I will not do that to the kids I love and make them live with the same pain I do.

What I will do is Stand Up and Speak Out on Elder Abuse. I would love to see a cure for all forms of dementia but never will. What I can do is raise awareness to the various ways we are abused.

June 23, 2016

Alzheimer’s may knock you off your feet and make you feel that you will never get back up and that is when it gets personal. You see only darkness and may get angry for what your disease is doing to you and then you must decide if you are going to give into your disease, or fight back.

I have been knocked off my feet so many times but my passion for a better life has always got me back on my feet and willing to take another punch. I will always fight for my life and those trying to take it away from me. Living with dementia is hard but we find ways to tough it up and find happiness. Never give up to any disease you may have, happiness is out there and just waiting for you to find it.

June 22, 2016

Today Hazel and I traveled by train to Harrisburg, along with several other representatives from the Alzheimer’s Association, for the PA Public Policy Coalition of the Alzheimer’s Association Harrisburg Action Day.

We were able to sit in on a legislative hearing and later Hazel and I met privately with four representatives on the action committee and tell them, from my point of view, what was most important to me in PA’s dementia policies. I was able to tell my story and advocate for changes and passage of Pennsylvania’s goals.

I told them although a cure needs to be found, a better quality of life could be found by passage of these goals. People living this disease should be invited on their committees to get input from the very people living with dementia. Now is the time to hear what the dementia community is saying.

Every State Representative I talked to, listened to me, asked me questions and I walked out of our Capital Building with the feeling that they are finally willing to listen to what, the people living with dementia are saying.

June 21, 2016

After being a victim of elder abuse, I can now speak out with authority on the effects it has on us and what we can do to protect ourselves from letting this happen.

We are in a state of disbelief and unable to understand what is happening to us and it is necessary to report it so someone that is not emotional connected can deal with it and help us.

Elder abuse comes in so many different forms and we tend to only think about physical abuse but emotional abuse is much worse and a crime. Emotional abuse will strip you of your dignity, inner peace and could drive you so deep into depression that suicide may seem to be the only solution.

This is the main reason why it needs to be reported so help can be provided. As soon as possible, legal document such as medical power of attorney, doable power of attorney, living wills and any other document that an elder lawyer may suggest should be completed.

Elder abuse is more common than you may think. It is a national problem and one we tend to keep hidden within our families and suffer the results. Help is available and you no longer need to put up with it.

June 20, 2016

Just returned from my doctor’s office and after a lengthy discussion, received the hope I desperately needed and a letter stating my level of competence which outdates any information that someone may have found in my medical records.

I was disturbed to find out that anyone in the medical profession could view my medical records but it is highly illegal if not directly involved with my case. I was referred to the legal department of Lancaster General Health and once again explained my fears.

They put a block on my medical records and only my doctor can now view them and anyone else will be immediately fired. They told me that they have strict guidelines to protect the privacy of patients and will inforce them.

Next is a meeting with our elder lawyer to change all our legal documents and ways for us to protect ourselves from the elder abuse we have been getting. I want my dignity and inner peace back and will do anything within my means to do that.

On Wednesday we will be going to our Capitol in Harrisburg to advocate for dementia awareness in Congress. One thing I want to speak out on is elder abuse and more stringent guidelines to prevent it. My experience proves we need to be more active in this area.

June 19, 2016

You have no idea what real fear is until you are living with dementia and one of your children drops the bombshell that you are incompetent and unable to make your own decisions.

The first thing you try to figure out is what is their motive. It surely isn’t my safety or the care I’m getting so it must be greed and what they think they can get out of their accusations.

Before I can defend myself, I need to prove that I have capacity to make decisions. This may be done through a hearing or additional testing which I will find out next week. After that they pursue whether any Hippa Laws were broken and take corrective measures.

I already had to prove I had sole ownership of a business that I owned due to accusations made by them. I now need to take the legal actions to prevent them from making any decisions on my health care and protect any assets I own.

I’m beginning to think there is no such thing as dying in peace. Someone is always there to get what they believe should be theirs. I never knew such fear existed.

June 17, 2016

When you have a terminal disease you are fighting many battles and the one I am putting the remaining portion of my strength in is the battle to regain the dignity back in my eyes. I have lost so much and suffered every single day of my life through the complications of living with dementia, but that isn’t enough.

I have accomplished so much working towards a Life Beyond Your Diagnosis but that isn’t enough either when someone is trying to strip you of your dignity. I don’t fear my disease but I’m scared to death of what my family is trying to do to me and my wife.

They want everything we worked for all are lives not caring what it is doing to us. They will continue to have the police knock on our door to prove we have done nothing wrong, but that is changing. Blood or not they will not intimate me by threating me by their belief I am incapacitated and not able to care for myself.

Why am I going public with my personal battles is easy to answer? So many seniors or people living an illness is being abused by their own children and are afraid to stop them. I wish to lead by example by having all the proper documentation to legally prove my point and not rely just on lip service to gain justice. A good lawyer is also advisable, so you in court.

June 16, 2016

I wish I could be angry instead of being hurt by recent events in my life. Is it possible to die in peace when you know what you will be leaving behind? I try so hard to find my inner peace in the here and now but I am not slipping into the thoughtless void fast enough, that is waiting for me, to not know what is happening all around me.

My survivors do not need the grief that will follow because I am helpless to do anything about it. Medical science states that my disease will make me lose my capabilities but never states when. Human natures states I will lose them when it is convenient for them.

Alzheimer’s is so much more then forgetfulness. It forces you to see the injustices while stripping you of the power to process them.

June 15, 2016

I heard a rumor just the other day that I was incapacitated and unable to make decisions on my own. This wasn’t made from someone that doesn’t know me but from a family member. The vultures are flying around me looking for some easy pickings and I’m not even died yet

You lose so much through your disease and people are just waiting to see what they can get. They never visit or check up on how you are doing but are pushing to get in line for getting any nimbles that could be left.

My family is no different then so many others’ that have a terminal disease. They can’t wait until it is over so they can see what they get. I live my life helping others but that isn’t enough, I have Alzheimer’s and they think my life is over and I have no needs for anything that I have. Boy will they be surprised when they find out differently.

June 14, 2016

Keeping balance in your life is hard to do when you are living with dementia. All the hype you hear and forceful opinions you hear makes you just want to throw up your hands and give up.

I have a hard time trying to be politically correct while living with this disease. I can’t tell you how I feel because someone will tell me I’m being offensive to them. I have to feel the way they think I should no matter how I feel.

There are groups that try to force their opinions on you and when you resist, they make you out as the bad guy. I’m not ranting, just expressing my thoughts on a disgusting subject that is never talked about it in the open, just behind someone’s back.

June 11, 2016

I have a hard time explaining what it is like having dementia and walking in a fog. It is so much more than being disoriented and not being able to see clearly. You are walking without a soul and no purpose in life.

Your life has no meaning and you just continue to walk. Thankfully, the fog eventually goes away and you regain control over your life. I’m not afraid of being in the fog because I have no feelings when I’m walking in it.

I have no idea why I am there or when I’ll return. I just need to continue to walk.

June 10, 2016

Living with dementia, the things we crave the most are dignity and respect. During the course of our disease we lose both because it is thought we no longer have the capability to have either.

We are stripped of our dignity and respect by the same people caring for us. They do for us the things we are capable of doing to speed up the process. We are removed from the decisions of our health and it is left up to others to decide what is best, in their minds, for us

We are never consulted what we want, just what they feel is best for us. They stripped us of our dignity and respect and never meant to. That is the very reason we Stand Up and Speak Out concerning our disease.

June 9, 2016

Living with dementia is like running against the wind. Things are so much more difficult for us to do and it takes more effort for us to do it. The simplest of things takes me so long to figure out how to do it.

You may never forget how to ride a bicycle but the thought process on how to do it may not exist anymore nor does the desire to do it remains anymore. It seems I always find the hardest way to do something.

I’m always running against the wind to get where I’m going. Maybe that is what living with dementia is all about. One thing I do know is, we will never give up.

June 8, 2016

What a frightening thought it is to realize that you may be losing your communications skills. You haven’t talked to me in a long time is a common question and your responds is, I haven’t anything to say.

The answer should be that I’m not able to formulate my thoughts to say anything. I want to say something or maybe tell I story but the words don’t come. I then hear that you just have writer’s block and it will pass.

It isn’t that simple because I know what to say but not how to say it. I form a thought but then can’t remember what it was. It won’t pass, it is part of my disease and something I am struggling with.

June 7, 2016

My backyard contains all the entertainment I will ever need. I just need to sit on my bench and wait for the action to start. I laughed so hard yesterday watching a squirrel do what squirrels do.

I had a bird feeder hanging from the railing on my upper deck that the squirrels loved to dine at. I replaced it with a wind chime and move the bird feeder someplace else.

I have a bench that views the deck and the gardens and while sitting enjoying the view a squirrel came for a snack and jump like he/she always does, onto what they thought was going to be a meal and landed on the wind chime.

Now this wind chime is rather large and makes a racket when the wind blows depending on if you like wind chimes or not. When the squirrel landed on the wind chime it gave off a racket that scared the squirrels so bad it did several flips in the air before it ran off.

I laughed so hard knowing the same squirrels will probably return tomorrow to do the same things. It doesn’t take much to put a smile on my face,

June 6, 2016

What a beautiful day after a stormy weekend. I am willing and able to take on the next bump in the road that occurs and continue to educate those living with dementia.

Every now and then you need to take a break and let your thoughts unravel because you got to close to the emotional side of your disease and it tries to swallow you up.

You not only see and feel the pain it is causing you but see it in so many others. It feels like the weight of the world is resting on your shoulders and trying to smother you.

We think of Alzheimer’s has that forget disease without realizing how it tears every fiber of your soul. When you start teaching about the disease you see the hidden effects it does to a person that are not talked about.

We never talk about the horrors we live because the emphasis is on finding a cure. People get upset and walk away because it is so depressing and the secrets stay hidden. The secrets of dementia is the weight we carry on our shoulders.

June 4, 2016

They are predicting some rather nasty storms this weekend and that brought back a memory of long ago. Many years ago I used to ride my bicycle to work, which was only several miles away, and when I was leaving one day there was black ominous clouds in the sky and I thought I better hurry to get home.

The security guard stop me and told me he had to advise me to wait out the storm before I tried to make it home. The rain was starting to come down and the lightning was getting very loud, and he feared for my safety.

Naturally I turned around and went to the coffee machine and got two cups of coffee and went back to his office to wait it out. This story and so many others like it, got me to wondering if there are truly angels walking amongst us.

So many events in my life has happen that could have turned out tragically if someone did not step in and stop me. I for one believe these special people are my guardian angels.

June 3, 2016

What a difference you made in my life. When I was diagnosed with dementia, I was scared and felt so alone. I didn’t want to show you my weaknesses so I put on my happy face and we pretended all would be ok.

I didn’t want to talk about it but your gentle persistence helped me realize we could still have a happy life together. I never lost my manhood in your eyes which left me to live my life with dignity.

We made so many changes to adapt to this new life, but we made them together. You told me I would never walk alone and for the past 12 years you have lived up to that promise.

Our care partners have no idea the differences they are making in our lives. This road could be so much harder if it weren’t for you and when the day comes I no longer need your care, I pray it made a difference in yours and gave you the strength to complete your journey in life.

June 3, 2016

I always laughed when I heard the expression, you can’t see past you nose. I was always told this when I couldn’t see what was before me. Only after I started to live with dementia did I realize that there was nothing wrong with my eyesight but how I view things I’m looking at.

I look at so many things and they blend in with the background that I don’t recognize them. My missing coffee cup comes to mind after I search all over the house for it. It was sitting beside my chair but I never saw it. Peace and harmony is some other things we overlook because we are caught up in the moment and fail to look past our nose.

June 2, 2016

What would you do if someone asks you for end stage information? Would you give it to them or try to make them feel better? My personal library has several good articles on end stage and I read every one of them.

I waited to read this information until I was able to handle what I read and capable of understanding the progression of my disease. I feel I have the right to know what is going to happen but not jump into it until I am ready.

So many jump from diagnosis into end stage and there lies the reason why we don’t talk about end stage. The power of suggestion is so great that they forget that there is life after their diagnosis.

Get to know what is happening to you and why before you look to far down the road but don’t put off learning about end stage before it is too late. Caring for someone in their end stages is nothing like caring for them in their early stages.

June 2, 2016

Most people will never find what we found living with dementia. We found a peace unlike anything you can image. I agree that dementia is a horrible disease especially if you are caring for someone living it.

You see the ugliness and we see and feel the peace overcoming us. We are giving up our life in hopes of a better life ahead of us. We imagine the life of no more nightmares or the fears of the things we are losing.

We are content with what we have and the memories of the life we lived. It’s hard to think that we could possibly be happy being a shell of the person we once were without knowing the person we became.

June 2, 2016

Stop looking for the old me and get to know the person I’m becoming. You may find out that I matured and got a little wiser. I slowed down and found the time to find the real meaning of life.

I was forced to face the things that scare me and find ways to get around them. I no longer think about getting ahead but try to save what I have. My days are consumed with thoughts of days long gone. I believe I like this new life and don’t miss the pressures of the old. I may be so different from others but once you gain serenity, you don’t want to give it up.

June 1, 2016

It is so hard to start up a dedicated group for people living with dementia because usually it becomes a caregiver support group. I’m not saying that it doesn’t serve a purpose but people living the disease are not the ones running the show.

The atmosphere of the group changes and the vast majority of the group are caregivers. No one wants to talk about the hard issues because they don’t want to upset us living the disease, but in reality it upsets the people caring for us.

We are not stupid, we know what is happening to us, but no one wants to talk to us about it. This why I love the Memory Cafes that I am involved in. We talk about these things without being ashamed because we feel the way will do. No subject is off limits unless it is argumenta, we leave that to other groups.

Everyone talks about how they handle a problem from their perspective and we share how we are dealing with our disease. It is a fun social gathering with lots of information flying about.

May 31, 2016

Someone asks me, what do you think about….. and when I respond, they may say, that was harsh. At this point I know they didn’t want to know what I thought but wanted to analyze what I would say.

We are asked so many questions and people really don’t want to hear what we say unless they agree with what we said. Many experts would rather not speak to us because we contradict what they read in a book. How could we, living this disease, know more than they do.

This myth is changing because the only way you will get a true feeling for what our life is like, is by taking to us. Try it and see if I’m not right.

May 31, 2016

Slow down and smell the roses. Great advice with a powerful meaning but does anyone every do it? Would you take off your watch and not look at it for a week? How about not watching the TV or reading a newspaper for a week?

Most people would say they could never do that because they cannot slow down and smell the roses. They are so used to their fast restricted life that they believe nothing exists but this life.

They come into our world of dementia and try to pull us back because once again, they know no other life and think we are not happy living this slow life that we are now accustom to living in.

Usually they get frustrated and believe we are losing our fight with dementia when in reality we found our inner eace.

May 30, 2016

Prayers do get answered but sometimes it’s best some don’t. We may pray so hard for that magical fix that never comes, and then get angry because our prayers weren’t answered. We never think what the results could be if they were answered, only at the moment that is what we want.

I pray it would be all over is one prayer we all make. I made that prayer many times but silently I was remained that I still have so much to accomplish and need to continue on. I’m not being punished for continuing living but being rewarded for helping so many.

May 29, 2016

This past week was good for me living with dementia. It was warm, sunny and I got to spend a lot of time outdoors in the back yard. Many hours I sat on my bench and thought about my future.

No it’s not all bad when I look around me and realize how blessed I am. I have a terminal disease but also an unbreakable joy for life. I block myself from squabbles and try to live within the peace that I formed.

I am escaping from the world I once lived in. I’m not losing it but rather giving it up freely. I can no longer tolerate the hustle and pressures of that life anymore. I want to relax on my bench watching the birds and complaining about the squirrels eating out of my bird feeders.

Living with dementia is not as bad as you think once you get to the level I am and trust your life to others.

May 28, 2016

You get the news that you have a terminal disease and you start to fight the battle for your life. It may be a short battle or stretch over many years but you fight with everything you have knowing there is no remission, cure or hope of winning.

The day comes when you are in your late stages and death is near You fought hard but now is the time to let nature take its course and take you home. Often times this is when the family squabbles begin and someone feels like they need to take over the body even though the person is still breathing.

They take away the dignity of death making decisions regardless on how the person may have felt. It is so important to make end of life decisions prior to when someone else makes them for you. Don’t wait because you don’t want to talk about it, and you totally lose control of your life.

May 27, 2016

When someone with dementia loses their grip on reality, is it a bad thing? Generally, we think it is bad and they are losing their battle with dementia. We do whatever is possible to bring them back into the horrors they see and feel.

We don’t even stop and think that maybe they are safe and free from their disease. We may not even know we are pulling their safety net out from underneath them because they don’t want you to know.

We tend to spend more time in our thoughts and this scares you. You try to keep us busy and active but there are times we just want to escape and get away from our dementia.

It makes you wonder if I’m losing my battle with dementia, or are you.

May 26, 2016

Sitting in my yard on a bright sunny day reaffirms my belief that I found peace in my life. I know my days are numbered and there is no cure in site, but I am ok with that. I’m not happy with the future that faces me but able to live with it.

Things were not always this way because I always needed to blame someone else for the miseries I felt. I never looked at myself and wondered if I was making myself miserable.

Many never find the peace I have for many reasons. I came to realize I needed a higher power to comfort me during my dark times and never give up on me. So many want to control their destination without realizing that they completely lost control and it is what it is.

Letting go without giving up is when you find your inner peace and are able to begin living with their disease. You can sit outside in your backyard with peace and comfort in your heart,

May 25, 2016

Sunny skies make for a beautiful day. I never get tired of sunny days but cloudy rainy days just plain depress me. The same is true with dementia, I don’t want to live in the gloom and doom of this disease.

I don’t want to be angry because of my disease but what can you do about it? You need to work hard to be happy, easier said than done, you betcha but anything worthwhile is going to take lots of hard work to get it done

I get strong responses when I say that I think we sometimes use our disease as a crutch for being angry and I understand the need to be angry at something for the things we feel we lost.

But we can’t live in this anger, we need to find ways to return to the living. Easier said than done, yes but I will do anything to enjoy the remaining portion of my life happy. I don’t wish to die angry.

May 25, 2016

Sunny skies make for a beautiful day. I never get tired of sunny days but cloudy rainy days just plain depress me. The same is true with dementia, I don’t want to live in the gloom and doom of this disease.

I don’t want to be angry because of my disease but what can you do about it? You need to work hard to be happy, easier said than done, you betcha but anything worthwhile is going to take lots of hard work to get it done

I get strong responses when I say that I think we sometimes use our disease as a crutch for being angry and I understand the need to be angry at something for the things we feel we lost.

But we can’t live in this anger, we need to find ways to return to the living. Easier said than done, yes but I will do anything to enjoy the remaining portion of my life happy. I don’t wish to die angry.

May 24, 2016

If you want to buy a new car, you can test drive it to see if you like it or not. So many things you can use on a trial basis prior to purchasing it. Wouldn’t it be great if you could try out various forms of dementia before you settled in to one particular form?

So many of us are diagnosed with some form of dementia and later find our symptoms are changing that may point to some other form of dementia. The best thing to do is to be reevaluated and start all over again, or is it? What happens if you came to terms with your original diagnosis and are comfortable to die with it. Will a new diagnosis change anything in your life or force you to doubt the things you learnt?

Retesting may be great for gaining more knowledge about your disease but at what costs to me. It only confirms I have a terminal disease and my due date is getting closer.

May 22, 2016

The other night we were at our Memory Café and went outside to meet in the pavilion because the church was using the room we usually meet at for a yearly fundraiser.

I sat down and mention that the only thing that would make this better was eating a hot dog. A friend of mine said, I’ll be back in a minute and returned later with several paper plates with hot dogs on them.

Without thinking about it, he created a memory that will last for all of us that was at that Memory Café. I have friends that are supporting me that are much more then friends, they are what I am today, they give of themselves to make our lives more enjoyable,

May 22, 2016

If you are bald does it matter if you don’t comb your hair or if you have a beard, must you shave every day? We get weird thoughts running through our brain at times and we tend to stop and think, what was I thinking?

A gesture may trigger a memory that has nothing to do with what we are talking about but for some reason I start to talk about it. At first you look at me and say, what are you talking about.

Of course I continue to talk like I never heard you but reality is, I never did and my mind is focus on this memory and need to tell you about it. I may come to the end of my memory and abruptly stop which brings another strange look from you.

At this point, welcome to my world, you have crossed over to the place I call home. Don’t try to understand it, it is nothing like your’s.

May 21, 2016

When I get to where I’m going, I hope all my dreams were filled. There will be no need for tears because I did my best and tried to bring meaning to everyone’s life that is living with dementia. It will be time to relax and smile at the work we got done by working together.

There was a time if you had some form of dementia you were just waiting around to die, but that has all changed. We worked hard to prove, not just say, there is life beyond your diagnosis.

We were able to accomplish some rather important things since we got the message, you have dementia. Our work is not done yet and our message needs to be told to all the new people being diagnosed with this horrible disease. In turn they need to tell the next generation and the next until we are truly living in a World Without Dementia.

May 21, 2016

Letting go without giving up,,,,, what does that mean to you? Well to me it means letting go of the past without giving up on the future. When you are living with dementia, you will need to let go of the past even though you don’t want to. It will simply just fade away.

When that happens, and it will, you can no longer live in past that you remember because it is slipping away. You have to let it go and look toward the new life you are entering.

It is scary but just waiting to be conquered. The slate is rubbed clean and you have a chance to build your life with a purpose without fighting for the recognition and things that you want. That and more will come to you in ways you cannot imagine. For the first time in your life you may be accomplishing things that you could never buy.

Your paycheck is replaced with the warm feelings that you are making a difference. For the first time in your life you are proud of what you are doing and don’t need the praise. You have found your way of letting it go, without giving up.

Thank you dementia for giving my life purpose.

May 19, 2016

What a wonderful time I had today being invited to sit on a panel at the all-day 5th Annual Early Stage Symposium sponsored by the Alzheimer’s Association. I was able to tell my story about living with Alzheimer’s and answer questions from the audience.

Several speakers including a neurologist, elder lawyer and speakers from different dementia organizations spoke about dementia and bringing awareness to our disease.

The Alzheimer’s Association did an outstanding job on putting together the educational program and representing us living with dementia. I am so happy to see the Alzheimer’s Association supporting all forms of dementia and bringing together the education needed to understand each and every one of them.

Great job to all involved.

May 18, 2016

So many people ask me if everything is ok because they don’t see me around much anymore. I’m fine but I’m spending more time doing the things that are important to me.

I’m out talking to the people, raising dementia awareness and trying to pass the message that there is life after your diagnosis. I’m trying to keep a low profile because my message is more important than anything I do.

I want the things I say to be remembered without me being remembered for saying them. A World Without Dementia is driving me and I feel it within my reach.

May 18, 2016

It gets so frustrating with you try to make me understand when I’m confused. The more you talk, the more confused I get. Confusion and living with dementia is so different because we are always trying to catch up to the conversation and a light bulb never comes on saying we now understand.

Confusion is hard for me to explain because it is like my thinking processes are slowing down and I only hear every other word you are saying. I try to figure out what you are saying and more words flood my brain.

It is best to stop and wait up on me to catch up before you begin again. The need to slow down is one of the most difficult things to learn.

May 17, 2016

Next time you throw a temper tantrum or yell at someone, I hope you realize how lucky you are. I can’t do that because I have Alzheimer’s. I would be treated for aggression or unhealthy behavior. You may be blowing off steam but we are not allowed to blow off steam.

We are looked upon with a fine microscope and carefully watched for any unusual behavior unlike you. Unless we are the perfect patient, we are looked at with a cause for concern.

I punched many locker room lockers in my life but the stigmas of dementia would get me a fast trip to the doctor’s office. Guess what, I still have human emotions and what was once acceptable is no longer because I have Alzheimer’s.

May 17, 2016

So many changes, lets blame it on the medications and not the progression of Alzheimer’s. It is so much easier to think of the side effects of the drugs then to think we are losing our battle with dementia.

After living with the disease for so long, it doesn’t matter to me. I know what changes are occurring and why they are happening. I have come to expect these bumps in the road and found ways to overcome them.

Our caregivers tend to try find ways to fix the problem without thinking that maybe that is the way it is. There is a fine line between giving up Hope and accepting these changes. I’m always accused of holding back information, but I see the panic whenever a change occurs and I try to tell someone about it.

Why didn’t you tell me sooner is always the first comment and that is exactly why I didn’t? Your concern overshadows my concerns and it takes a whole different direction. Relaying information becomes me having to defend why I didn’t tell you sooner and it is so easier for me not to go through that and just keep quit.

May 16, 2016

Watching Glen Campbell’s Goodbye Tour gives me goosebumps with the thoughts of, when will that be me struggling to do the things I love. Watching that video, you can see the love and support his family gives him helping him follow his dreams and play out his years.

It is so hard to watch someone you love struggle but you can’t take away that little bit of enjoyment they have left. Yesterday Hazel, Patty and Keith helped me clean out a flower bed and remove three bushes so I could plant some bulbs that I was so anxious to get planted but struggling to do.

They did not do the work for me but helped me get it done. They allowed me to have the feeling that I got it done, with the help of my family. They are supporting me without taking away my dignity or self respect.

May 15, 2016

It is so hard to tell you what my bad days are like but just as hard to explain my good days. Just the other night I had the most peaceful sleep I had in a long time and when I awoke, I realized that I had a sound sleep with no nightmares.

I felt refreshed and full of life. This is a good day for me even though I slept. When I experience the things you take for granted, it is new to me and stands out as a good day.

My days are filled with so many hardships that when some normalcy enters my life, I see it as a good day. I guess a good day is a day that I don’t want to give up.

May 14, 2016

What do you do when you are walking and you get lost? Most people will continue to walk until something looks familiar and they find their way home. Not in the case of someone living with dementia.

They will continue to walk and their mind goes blank. They may continue to walk not recognizing anything but maybe further down the road may be some place they know.

They get frustrated and often times refuse the offer of help. They know that standing still will not help them remember where they are, so they keep walking. Once they realize they are lost, panic sets in and strange behavior may occur.

Most times it is best not to ask if someone is lost, because that reinforces their fears. Ask them where they are going and if you can help them get there. If you think someone is lost, they probably are, don’t leave them on their own to find their way.

May 13, 2016

How do you answer the question, “What is it like living with Alzheimer’s”? My answer would have to be, just like you but different. Contradictory but how else would I answer it.

I look, eat, drink and smell like everyone else but that is about all we have in common. When it comes to my thought process, we no longer have anything in common. I am unable to think the way you do.

There is so many gaps when I process something that it only makes sense to me. I am losing my communication skills and you have to learn new ways to talk to me. Everything seems to be going slower for me which makes it harder to follow the fast paced life you are living.

Living with Alzheimer’s makes it so you never forget you have it. Times of hopelessness overcome you and reminders of worthlessness creates the living conditions of constant fear. You don’t want to die, but you wish it would come to an end.

May 13, 2016

What are the best topics for discussion when you are having a Dementia Chat? If it is informational in nature, then I believe it is the topics that are uncomfortable to talk about and listen to.

I say this because these are the things we never talk about. I’m not talking about confrontational things that may lead to an argument but more on the emotional side of dementia.

We all know that living with dementia is Hell, but why do we feel that way. Why are we so hesitating to mention the things that scares us the most about living with dementia?

You need to get personal with the disease if you want to learn about it. Learning about the clinical side of dementia is only one part of the knowledge needed.

May 12, 2016

You were given the diagnosis of some form of dementia and you are so angry. This couldn’t possibly be happening and there must be some mistake. I’m too young or I feel great so they have to be wrong.

Sounds familiar doesn’t it, we don’t want to be saddled with the stigma of having dementia and we certainly don’t want anyone else to know about it. How do you get over the anger and accept your diagnosis so your life can move forward?

The first hurdle to cross is the acceptance of your diagnosis. This doesn’t mean you like it or you are giving up but rather you are open to the options and changes you will be facing.

Most of us know we are having problems but dislike the label that goes with it. It may not be the disease we are uncomfortable with, but that label everyone puts on us.

It could be a short process or a long one, but you will find ways to adapt to this new life and come to realize that there is life after your diagnosis. Don’t be hard on yourself or the people around you, understand your problems and find your happiness.

May 11, 2016

You feed them and allow them to freely romp around in the yard and how do they repay you, they nibble on the flowers you just planted.

May 11, 2016

I feel like a little kid sneaking outside to plant some flowers in between bouts of showers. April showers blah blah blah, I know the story but how long is April going to last?

The seven-day forecast is cloudy with periods of rain although one day the sun is expected to peak out. I don’t care, it is after Mother’s Day and I’m going to plant my flowers.

I poke my head out the door and try to guess if I can plant a tray of flowers without getting muddy and dragging mud into the house. At least if I can get them planted, I don’t have to worry about watering them.

I plant them and then wonder if one of the neighbors will tell Hazel I was outside playing in the rain.

May 10, 2016

I wonder if we are guilty of raising the heartless people that were once our children? We taught them to be strong and independent and not to run back to us whenever things don’t go their way, stand up and make your own decisions.

Maybe we never taught them the importance of family and helping each other out. We gave them love and all the comforts they would ever need but maybe not the desire to return them. In America we tend to look out for ourselves and not be bothered with the hardships our parents may be having.

I know this is not the case in every child and young adult but I know the statistics on the ones that are spoiled and abandon their parents when they are no longer useful to them.

May 10, 2016

I have Alzheimer’s and I’m expected to have bad days. Most people think, he’s just having a bad day and things will get better for him tomorrow. But what happens when those bad days become my new normal and they don’t get any better.

So many still think we will “bounce” back to the way we were but we don’t. You only take notice of this when you look into your rear view mirror and see the things you were once able to do and can’t anymore.

You mourn these loses until you realize that there isn’t that much more to lose. What happens when you lose everything and are left with nothing. Will I know how to be scared or will I just be living?

May 8, 2016

Mother’s Day is a joyful occasion for many but for some it is a reminder that their heart is broken by the very people that they gave birth to. For some reason these thankless children fail to recognize the sacrifices their mother made for them and chose to ignore them on the one day set aside to honor them.

Mothers will never tell you of the abandonment they feel and will most likely defend their children’s actions. I don’t have to show any respect for any child that fails to honor the person that gave birth to them and will never makes excuses for them.

You may not like your mother but you damn well better respect and realize the sacrifices that women made for you.

May 8, 2016

Soaking up the sun took a different meaning for me today, while I was sitting on my deck enjoying my morning coffee, it felt like my body was actually absorbing the sun rays.

After so many days of rain, it was nice to let nature wash away my problems and give me the strength to carry on. I have no doubts that I am not in control and outside forces are guiding me to live with my Alzheimer’s

After so many days of cold rainy weather, my plants are thriving and enjoying the sun as much as I am. I walk around my garden and it gives me the hope that I will also thrive in the days ahead.

Giving up your life and putting your trust in others is very difficult but trying to go it alone and failing is much worse. I know whatever Alzheimer’s has in store for me and whatever heartaches lie ahead, I will be given the strength to handle it.

May 7, 2016

Walking down the path of dementia, you look to either side and see people walking and wonder if they are walking with you or just going in the same direction. There are days when that path gets so lonely, and those are the days you need to walk alone.

Sometimes no one can help you and you need to find your way on your own. Your emotions are at their peaks and you hurt without any pain. When I was little I often heard the expression, the day will come when you meet your maker and while I’m walking alone, I seek him out.

I need guidance and someone to tell me what to do but I can only be told my choices and I need to choose which one. Somehow, somewhere I get the strength to make the choice that is right for me and I continue on with my walk.

May 6, 2016

The more you learn, the harder it gets. I call them life lessons but you may know them as black holes or bumps in the road. It doesn’t matter what you call them, they are the events that turn your life upside down and brings you to your knees.

Living with Alzheimer’s I have learnt many life lessons and have the scars to prove it. They are not physicals scars that you can see but are hidden within your very soul. Some see scars as a badge of glory but the ones I carry; I never want to surface.

It gets harder as you progress with Alzheimer’s, due to life lessons you need to learn like crying, that will only draw pity so you learn to smile and hide your fears. You can never be honest if you have dementia because people will think you are crazy or try to fix you.

So many good intended solutions are given to you that people think may help you but you can never fix the emotional turmoil and unexplainable fears you have. You say thank you, put on your happy face and pretend all is better.

May 6, 2016

When you talk to your doctor about the nightmares you are having, it becomes clear why you are having them. Your disease is progressing and you are reacting to it.

You cannot hide behind a smile because you know everything is not ok. The weight of pretending is getting to much to carry and you know what the outcome is going to be and it is time to face it.

The nightmares of hopelessness are controlling my nights and my days are spent pretending it doesn’t bother me. It’s a vicious cycle that needs to be broken but I haven’t a clue how to do it.

Increasing my medications will only mask the problem and not solve them. I of all people should realize what is happening to me but not how to deal with it. I pray I will be able to continue writing about my journey and give you my thoughts on dementia.

We are only scratching the surface on how dementia effects our lives and how difficult it is for us that have it.

May 5, 2016

What a shock when I thought I bought Photoshop for $88 and found out that was per month. Another reason why someone with dementia should not be allowed to purchase anything online. Hazel quickly fixed it and cancel that subscription.

May 5, 2016

It is what it is and I accept that. It all depends on my outlook on life and how I want it to go. If I am surrounded with doom and gloom, I will live in doom and gloom.

I get somewhat depressed with the stretch of rainy days we are having, but I try to look ahead when I will once again be sitting outdoors in the bright sunshine. When I allow it, the problems of living with dementia, will overcome me and send me into a tailspin.

I need to keep reminding myself that I am in charge of my happiness and not let the problems overwhelm me. It’s a constant battle but I feel it is worth fighting for the feeling of being worth the person I am.

May 4, 2016

It leaves a bad taste in my mouth when I am told I can no longer do something. It attacks my ego and reminds me that I have Alzheimer’s. It’s different if I find out that I can no longer do something and makes it easier to swallow.

If it is a safety issue, you should prevent me from trying it but if you are only uncomfortable and I want to give it a try, I believe you should allow me to succeed or fair.

I was asked what one piece of advice I would like to give everyone caring for us living with dementia and the first thing that came to my mind was, don’t handicap me, allow me to fail.

May 4, 2016

Learning new things, living with dementia can be very difficult, but not always impossible. You must use extreme patience with me while I’m learning something new. What may seem so easy to you may be very difficult for me to understand.

f you show any signs of frustrations, I will simply give up and not even try. I am learning speech recognition on my computer so I can talk without the need to type. I can now open and close applications and type into a document without using the keyboard.

I want to learn and understand how to do this so I can teach others how to use their computer with simple commands. My typing skills are diminishing and speech recognition may help me to continue writing my blog.

May 3, 2016

With Alzheimer’s, it is a long slow goodbye. We don’t notice the things we lost until we take inventory and realize we can no longer do something. We assume we can actually do something until we sit down and try to do it.

Reality shakes us and then we only take notice that another part of our life has been taken away. So many things were once a part of my life but today I barely remember them. I can’t miss them because I barely remember how I ever did them but I do remember them being a part of my life.

The only thing we can do is flip the page and start a new chapter in our life. The chapters are getting shorter because our lives are beginning to change faster and the adaptions to these changes need to be done. The end of the story is in our minds and we just need to play it out.

May 2, 2016

Sometimes you need to get a little dirty to enjoy the beauty that is around you. In the spring many flowers bloom and we miss seeing them because the weather is ugly outside. Looking at crocuses bloom in the snow or watching tulips bloom is often missed because it is raining and cold outside and we don’t want to bundle up to look at them.

We may look out the window at them but never get to really enjoy the way they feel or smell. When you are living with dementia, you often miss out in seeing these things and have to rely on someone telling you how pretty they are.

Don’t get upset with getting a little wet or chilly, get to know what nature has to offer and be thankful.

May 1, 2016

Short term memory loss is one of the things I miss the most. You don’t think about it because if you forget something, it will come back to you. In my case it never does.

It is getting worse as my disease progresses. I take notice I’m forgetting things mid-sentence and unable to complete what I was saying. I notice it a lot during writing a blog entry.

I try to think through what I want to write about but when my fingers touch the keyboard, the thoughts are gone. In the blink of an eye, my mind goes blank. I have no idea what I wanted to write so I’m unable to recall the thoughts.

It scares me that I may be entering into the void of Alzheimer’s and losing all traces of reality. I hate that I know what is happening to me and unable to tell you how scared I am.

April 30, 2016

Have you ever walked across a train trestle? It is one of the scariest things you could ever do. It is up to you to make it across safely without any help from anyone. You walk across the railroad ties thinking you could drop through at any moment.

You may stop halfway across and see the openness around you and realize how vulnerable you are. You feel the wind and start shaking knowing you are going to fall. You finally get to the other side and realize you have to return the way you just came.

The feeling you feel right now is how someone with dementia feels. We cross the trestle and realize we are going to do the same thing tomorrow and need to face the same fears. We get satisfaction when we cross the train trestle of dementia but fear overcomes us knowing we need to do it again.

April 29, 2016

Will Ferrell pulls out of Ronald Reagan movie after outcry from family, the best headline I read in a long time. The movie was going to be a satire on Ronald Reagan and his fight with Alzheimer’s. It is sad to think that people think living with any form of dementia could be a comedy is beyond me.

It proves once again that there are people willing to make a buck on the suffering we go through. I am so disappointed that Will Ferrell would even consider to be involved in a project like this, let alone the people that wrote, directed and acted in it.

It is so important to have a sense of humor living with dementia but not at the expense of making fun of us and getting paid to do it. American greed will be the downfall of a great and wonderful country if we do not put a stop to it.

We fight so had for the respect and dignity of everyone living with dementia and find out that our message is going nowhere. If a buck can be made it Will, even at the expense and dignity of us living this disease. If this move is made, I will be asking for help in preventing it ever being shown in my town.

April 29, 2016

I need some sunshine, it’s been cloudy and raining all week and next week is predicted to be the same. April showers bring May flowers unless I’m unable to plant them.

Impatiens are not only flowers but people like me that can’t wait. I can’t wait to slow down and watch my flowers grow. Doesn’t make sense does it but I have Alzheimer’s and that makes it ok.

Working in my garden and taking my periodical coffee breaks makes living with dementia tolerable. I lose myself and all the horrors that go with my life, drift away. Maybe I’ll go to a tanning salon and get a sun burn.

April 28, 2016

Working together is the only way we will bring dementia awareness. Trying to be “the voice” of Dementia doesn’t work. Dementia effects everyone differently and you only know what you know.

So many various forms of dementia are now being discussed that people are saying they thought Alzheimer’s was dementia. They never heard about these other forms of dementia that we are beginning to talk about.

I believe the best discussions are the ones that a group of people living the disease are free to talk about their disease from their point of view. Most talks are from our care partners point of view and what they observe. They see the effects of the disease but not the feelings behind living it.

We are beginning to work together and call it what you want, I like to think we are becoming United Against Dementia.

April 27, 2016

We all make sacrifices when you are dealing with dementia, but what is a sacrifice? My definition of a sacrifice is giving something up without the hope of getting it back. When you sacrifice something is may make you sad or maybe even angry.

You lost something and take it personally. You cannot forget your lost and carry the weight of that pain with you and can’t get it off your mind.

What happens if you don’t think of it as a sacrifice put rather adapting to a new life. We lose so many things living with dementia that it would drive us over the edge if we thought of them as being sacrifices.

I would rather say I adapted to a change then think of it as a sacrifice. I feel no pain and may even feel like I accomplished something.

April 26, 2016

When I was growing up I was always told not to show your weaknesses and always show confidence in whatever you are doing. To this day I follow that training and try not to show you the days I am weak and down with my Alzheimer’s.

When you are bred to be a man, it is difficult to give into your disease. Never cry because someone will think you’re a baby and man up to the most difficult of times and never ask for help.

Then we are diagnosed with some form of dementia and told to reach out and ask for help. We want to, but it is so difficult because men don’t do that. We are a man so we silently suffer through the fears because we were trained to.

Don’t try to tell me Alzheimer’s is all about forgetting things, maybe if I can gain your trust and know you will always see that strong man I once was, I would tell you what goes bump in the night.

April 25, 2016

Be realistic and accept your limitations, sound advice but not what we want to hear. We have a need to be the person we always were but our dementia won’t allow that.

Being realistic is knowing you are entering into a new life, one with so many changes. No more denying the fact that you have dementia and in order to live a happy life, you will need to find ways to adapt to the changes and live with your disease.

Learning your limitations is painful to watch. You must fail at something before you can find out you can no longer do it. Some try to take a short cut and say, “I can’t do that because I have Alzheimer’s”. They don’t try to find their limitations, they just assume they can’t do it.

Every day I am challenged to be realistic and accept my limitations because my life is always changing. I accept the challenged because it is better than just giving up.

April 24, 2016

Star light, star bright,
First star I see tonight,
I wish I may, I wish I might,
Have this wish I wish tonight.

When I was young, I sang this all the time and wished for so many silly things not realizing how my wishes were going to change over the years. I still sing it today, but never once wished that I was never diagnosed with Alzheimer’s.

What I do wish for, is the strength to continue raising dementia awareness and fighting for a better quality of life for everyone living with dementia. The hardest battle I fight is the one to continue on.

At times I think why am I fighting this winless battle and it never fails that someone reminds me why I do the things I do. I don’t do it for the recognition but for the need to educate people what life is really like living this disease.

I walk my Walk to End Alzheimer’s every single day of my life without a day off, not to raise funds but to raise awareness which will lead to a better way of life for us.

April 23, 2016

Yesterday I fought with my dementia and I think I won, why is it that when I woke up today, it seems like I will be fighting again. Dementia never gives up; it will try to beat you whenever it thinks it can.

I struggle to get dressed in the morning and get my mind out of the fog and it seems I did the same thing yesterday. The same battles but just a different day. I never win against my Alzheimer’s but I’m so happy to wake another day and give it a try.

I now know how to win these little battles because I adapted to them. Living with my disease is easier for me than trying to fight it.

April 22, 2016

Panic attacks to me are the times when my brain won’t tell me what to do. It’s the feeling I get when I want to do something but don’t know the why’s or how’s of doing it.

I know if I don’t do something, my frustration will overcome me and I will get agitated. I push my brain to tell me what to do and when it doesn’t, I simply react the only way I know how.

It’s hard to smooth over a panic attack and it’s best to try to avoid it whenever possible. Large crowds or noise will often lead to a panic attack and I try to avoid them.

April 22, 2016

Why do I need to be so impatience? Mother’s Day isn’t that long away until I can plant my flowers outside, but that to me is like saying, no Christmas tree until after Thanksgiving.

I look at the forecast and they are not predicting a frost until next fall and feel relatively safe nothing is going to happens just like nothing will happen if my tree goes up before Thanksgiving.

Is this an old wives’ tale or will I be kicked out of the neighborhood for displaying beauty before Mother’s Day? I keep pushing my luck by planting something, only because I’m not being supervised.

April 21, 2016

I’m finding out that taking to an older person is like reading a history book. Most must be history buffs just waiting to be opened and read. I was speaking with a gentleman last night and told him I was born in 1946, he proceeded to tell me he was just returning home from WW II.

He started to tell me events and General’s names involved in the war. I couldn’t be more impressed with how he was able to recall such memories and willing to share them with me.

Everyone has a history book sitting in their chair just waiting to be opened and read. Recalling past event gives you that spark that leads to a happy life. Just don’t care for someone, talk to them and learn some history.

April 20, 2016

Wonderful talk tonight at Pleasant View Retirement Community concerning dementia awareness. I am always more than willing to speak at these places about Life After Your Diagnosis.

April 20, 2016

Yesterday Hazel and I went to the garden nursery to pick out some flowers for my sensory gardens. 149 plants, 28 herbs, a planting table and less $758 I came home with a happy face and a car load of goodies. I picked out several pots with an assortment of colorful plants to sit around. My sensory garden is designed to heighten my senses of sight, smell and touch and give me a feeling of tranquility.

I got a stern warning to wait until Mother’s Day to plant anything which is going to be the hardest thing to follow. I plan on talking to the rabbits and squirrels, and of course Jade from romping around in the gardens. Once I get everything planted, I will post pictures to show you why living with dementia doesn’t have to be all doom and gloom.

April 19, 2016

After breakfast I start my day with a cup pf coffee and look at the newspaper. Most of it I don’t read because it is too depressing, but every now and then something catches my eye.

I spend this time trying to clear my head after a restless night. I like to start my day on a pleasant note regardless how my night went. Today is the day they deliver my new deck furniture.

My rocker is being replaced with whicker style chairs and sofa on my upper deck, which will be more comfortable to sit on. My rocker is going to be placed in a pergola structure, in the back yard, which I plan on building, surrounded by a sensory garden.

I am planning ahead to the days I just want to sit alone and let my mind wander.

April 18, 2016

I wish I could find the words to describe what it feels like to me to be back sitting on my bench outdoors on such a beautiful day. I can describe the horrors of living with dementia and what it is doing to me but the calmness that overcomes me sitting out there is impossible to describe.

I have found peace and the blissful feelings that go with it. Total relaxation doesn’t even begin to describe it. This is my world and I feel safe. The hours go by and I don’t know where they went and I don’t want to return to the world of dementia.

Maybe I can’t describe them because I don’t want to share them. These are my feelings and you need to find your own. I wish you could sit by me and learn the things I did and just let yourself be free.

April 18, 2016

Make a donation today, help a family living with dementia. Have you noticed how commercialized dementia awareness has become? Everywhere you look someone is hawking their product pretending the money they raise is going to a good cause.

I get yelled at a lot because of my views on raising funds under the disguise of research. I know it takes money to fund research but most of these businesses are not nonprofit, they are out to make a buck. They try to embarrass you if you question where the funds go.

It’s the American way to make a buck wherever you can. I support any product that brings awareness to dementia and actually improves living condition but keep the marketing strategy respectful to the people living this disease.

April 17, 2016

If you were given the opportunity to improve a person’s life living with dementia, would you. The next question would be, will you. It is so easy to do and doesn’t cost you anything, just a little of your time. Sitting with someone with dementia for one hour and not having their care partner worry about them may be the break they need. Escaping from dementia for one hour may give them the strength to fight their frustrations.

I do it all the time and I’ve been living with Alzheimer’s for 12 years. I love sitting with them and listening to their stories because it makes me feel like I’m giving back for the rich life I’m living.

It doesn’t have to be someone living with dementia, it could be anyone that has a caregiver. Reap the rewards of volunteering knowing you are making a difference.

April 16, 2016

I think to myself, what a wonderful world. I have been living with the diagnosis of dementia, probably Alzheimer’s, for the last 12 years and can still sit on my deck and appreciate what is around me. I’m sitting on my rocker with a luke warm cup of coffee watching the two little girls next door play like two little girls do, under the prettiest cloudless blue sky I could ever wish for.

I’m listening to the music I love and several birds stop at the feeders not caring that I’m watching them. I know there is a downside to living with Alzheimer’s, but for now, I could not wish for a better life.

April 16, 2016

I’m never going to go away. Those little things that infuriates you will always be with me. It is in my nature to have coffee spill when I fill the cup too much and try to walk to my chair.

Every now and then I will forget to pick up my sox’s or put my shoes in the closet. You can bet on me taking a nap while you are trying to vacuum the floor or want to bother you when you are trying to do something.

These are the memories that will always be with you and give you the strength when I’m no longer around.

April 15, 2016

What is real and what is not. It is so hard to tell when you have dementia. The stories we tell may be so farfetched you may wonder where we ever came up with that, but to us it is true. Our mind is tricked into making us think that it actually happens.

You may say, quit your lying or reason with the person to try to show them it is not true, but are you ever successful? We may be convinced that our story is true that we begin to think you may be the one lying. How would you know, you weren’t there?

The sad facts of life are; does it really matter. In my mind I am always right, and I will prove to you that I am even if it means I need to shout at you. Most times it is best to leave an untruth slip by and not look at it as a lie but reality playing games with me.

April 14, 2016

Fifty miles of bad road is what it is like when you are having a bad day. What is a bad day compared to a normal day when you are living with dementia? Your normal day is living with the ever present feelings of your dementia. You may feel bad but you are in control

When you are having a bad day, you are no longer in charge, your dementia is controlling your every thought and emotions. You lose motivation and fall into despair.

A bad day for a person with dementia is nothing like a bad day for you when your hair is unruly. Bad days to me is more emotion then physical. I’m not in pain, I just feel worthless.

April 14, 2016

When we don’t show you our true feelings living with dementia, are we in denial or are we trying to protect you from seeing the hurt in us. Speaking for myself, I’m not trying to escape anything, I just want you not to see what I’m becoming.

One of the biggest comments I hear from our caregivers is how much it hurts them to see us decline. It breaks their hearts to watch us struggle and makes them cry.

We hear this and want to protect you from this pain so we put on our happy face and pretend everything is alright. We are not in denial, we know exactly what is happening to us and want to protect you from seeing it. You have to realize; it also breaks our heart to see you cry.

April 13, 2016

Why is it so hard for me to take my own advice? My life depends on me giving Hope to others and telling people to never give up no matter how hard the road becomes.

I have come to realize that reaching out is more than giving Hope but reaching out and accepting Hope from others. I need to stop thinking and just start doing. When I start to think of what is happening to me, I lose focus what needs to be done and have a meltdown over the things I lost.

Our Memory Café tonight reminded me why I enjoy my life and my purpose in life. My Facebook friends never left my side and left me work out fighting my demons on my terms and gave me the strength to help them. I’m human and know I will have another meltdown because Alzheimer’s doesn’t like me to have too long a string of good days, but I also have to grab one of those hands being offered to me when I need to.

April 13, 2016

You really don’t know what it is like living with dementia until you fall into one of the holes we do. We may tell you how terrifying it is but never do we tell you why. You never see the tricks dementia plays in our brain but only the effects it has on us.

Facing my fears and telling you about them is the only way you will understand why Alzheimer’s is so devastating to me. I always said that the emotional part of dementia is worse than wondering where I put the car keys.

April 13, 2016

You really don’t know what it is like living with dementia until you fall into one of the holes we do. We may tell you how terrifying it is but never do we tell you why. You never see the tricks dementia plays in our brain but only the effects it has on us.

Facing my fears and telling you about them is the only way you will understand why Alzheimer’s is so devastating to me. I always said that the emotional part of dementia is worse than wondering where I put the car keys.

April 12, 2016

Sadness, frustrations and anger is what I feel. I have no idea why I feel this way but I feel like I have to lash out at someone to protect myself. My world is closing in and trying to smother me. I am looking for a reason to get rid of the anger that built up in me before it kills me. Alzheimer’s stole my life and I want it back but I know I can’t and it makes me so angry. When you are down here where I’m at, you have absolutely no control over your emotions.

I’m not thinking rationally and would never have these thoughts if I wasn’t alone, sitting by myself in the dark. I want to scream or cry but I can’t, I just need to sit here and wait for this to end.

Don’t come looking for me because I will fall deeper into my despair because I never want you to see me like this. I brought my faith with me but so far I am not listening because I am so afraid.

April 12, 2016

Walking in the pits of Hell is what it is like at times living with dementia. You don’t hear about the emotions we go through so you have no idea what it is like. I want you to know, but you may not want to, so I suggest you skip reading my posts for the next day or so because I plan on writing on what I feel and let you feel what I feel.

Don’t judge me or try to fix me, just open your mind to one person who fell into the hole we talk about.

April 12, 2016

A year goes by and I look back at the rate of decline I had living with Alzheimer’s. You may not notice it because I won’t allow you to see it, but fading memories and that short term memory is taking a toll on me. I think of a blog I want to write and by the time the word processor loads, I completely forget what I wanted to write.

When I look back at the same year, at the progress I made with the work I do, I don’t see the same advancement. I know you are going to tell me how many people were helped, but I see how many people are starting out on this journey and the number is increasing at an overwhelming rate.

This is when you don’t try to fix my problem or make me feel better, you walk with me and listen to me until I work it out. Sometimes I need to walk alone.

April 12, 2016

Things that go bump in the night and scares us out of our sleep. We call them nightmares but sometimes they are more than that. They are personal and so vividly real. They reach inside you and fine the things that scare you the most. Mine always center around me being lost, reaching out but not being able to get help. I have never found my way back before the nightmare ends.

We tend to think of nightmares of the Halloween type that scare you with a frightening figure that goes boo, but when you are living with dementia, your nightmares are the emotional personal type that are hard to face and explain.

April 12, 2016

Sometimes your dreams fade away because of reality, and changes are needed. The Forget Me Not web sites have lived out their usefulness at forgetmenot.support and forgetmenotsignup,com and will be discontinued. The Facebook Forget Me Not groups will still be active but I will be less involved in them.

I plan on continuing writing my blog and posting on my Facebook wall but need to spend more time on the things I feel are productive. I’m planning in the future to create a webinar where we discuss the issues related to living with dementia and stay away from what I call the safe topics of discussions.

We live in a world that is so scary that no one wants to talk about it. I want to talk about these things, in a group discussion, from the viewpoint of someone living the disease. I want you to view these webinars to feel and understand how we view things.

I want to expand our Mentoring meetings like we have at the Health Campus. with the care facilities that we have locally, and create more Memory Cafes where we can socialize and discuss the problems we have. Social media is just that and tends to sway towards the care giving problems and less on listening to the people living the disease. I hope to make a attempt at changing that.

April 11, 2016

I am losing my objectivity toward living with dementia and it scares me. Where can I go to talk about the issues concerning me living with this disease and not concerning how our caregivers handle it. Most places want to keep the conversation safe and fluffy and not upset the apple cart and not talk about the issues that they are uncomfortable talking about.

I want to discuss the Right to Die and our care partners taking on lovers to satisfy their needs when their spouse living with dementia can no longer do that. There is a common acceptable belief to this and I have dementia and would like to know why people feel this way.

I thought I created a group with this freedom to do this without judgement and respect and dignity, and I did for the most part, but the majority only wants to talk about the caregiver’s issues from their point of view. I’m beginning to think that Memory Cafes are the only place we can safely talk about what is bothering us.

April 10, 2016

When you light the fuse, expect an explosion. Tough love doesn’t work with someone living with dementia. You may be tempted to use this method when you are dealing with us but once you light that fuse, run for cover.

We see tough love as aggression on your part, and react to it, sometimes in a violent nature. Once you light that fuse, no matter how hard you blow, it won’t go out. At this point we don’t hear you say, “I didn’t mean that”, we are set to do battle.

At the slightest hint of agitation, you must realize you are on the wrong path and redirect the conversation. You will learn very fast there is no right or wrong because you are dealing with raw emotions.

April 9, 2016

I got into a conversation on how lonely it is for a person caring for someone with dementia and watching them slowly fade away and thought how lucky they were because they are able to escape their loneliness, we feel the same loneliness but can’t.

April 9, 2016

When you’re living with dementia, you no longer play the what if game but play the when game. You don’t worry if I lose my memories but rather, when will l lose them. What will happen to me if I start to decline changes to, what will happen to me when I decline to the point I need constant care.

These are not your dinner table discussions because no one wants to talk about them. Just because we don’t talk about them doesn’t mean we don’t constantly think about them.

When we are left alone to think these through our inability to process these thoughts may lead us in the wrong direction and no one is available to talk to us. We tend to think the worst and end up dreaming about our fears.

By the time we are incoherent and unable to communicate, we are heading toward our fears and no way to stop. We can no longer tell you we are afraid.

April 8, 2016

You make me smile when I think I can’t, you pick me up when I’m down. You carry the load when I no longer can. You find me when I’m lost and you do all this not looking for anything in return. You do it because it needs to be done.

You don’t even have to guess who I’m talking about, you’re the people caring for us because we can’t. You love us even though you may not be in love with us. We may be strangers or not the person you remember but you feel the need to help.

You may think we no longer remember you or appreciate the things you do for us, but we do, we just can’t tell you how much we love you and say thank you. It’s lonely in this world not being able to return what you do for us.

April 7, 2016

“Cognition is the way we use our brains to think”. So what does cognitive impairment mean. Simply it means, that we have the information stored in our brain but are unable to obtain it.

It has nothing to do with how smart we are, but not being able to get to that knowledge. When you are diagnosed with Mild Cognitive Impairment (MCI) it means you are beginning to have problems processing these thoughts. As time goes on, you begin to have more difficulty processing these thoughts and leads you toward some form of dementia. Learning about dementia will get rid of the myths and stigmas of dementia.

April 6, 2016

I am not in the late stages of Alzheimer’s and refuse to have anybody put me there. The mid stage of our disease is the hardest part because people cannot believe we are doing so well and think we should be in our late stages simply because of the length of time we are living with our disease.

I read in MebMD that the survivor rate is reported to be 4.5 years and we all know that is a bug crock, well let’s just say I believe that could be wrong. Many live in excess of twenty years a full meaning life, with goals and dreams to achieve.

Don’t let a number tell you when someone is in their late stages. Let their cognitive abilities indicate what stage they may be in. I read so many stories from care partners that tell how remarkable their loved one is doing and wonder why they are so surprised. If you allow us to fly, we usually do.

April 5, 2016

It’s just the fool in me that thinks more people are becoming aware of the hardships of living with dementia or is it? Total strangers are coming up to me and are interested in talking about my thoughts on dementia.

Several care facilities are inviting me to talk to them and their staff about becoming more dementia friendly. It is my belief that we have turned the corner with people with dementia being locked up and someone overseeing them.

They are becoming aware that we still have a life and need to be kept active. We need to be physically safe but also have our emotional needs met. No longer are we lined up in front of a TV to spend our day.

More facilities are getting activities directors and offering us activities that we are capable of doing. Care facilities are no longer a place to store us until we die but rather a place we can live until we die.

April 5, 2016

If I said it once, I said it a thousand times, there is always a reason why we do the things we do. At times you need to be a detective to figure out what is going through our minds.

I’m reminded of the story of a women living in a care facility that refused to get up out of her chair even after so much coaching from the staff. She sat there and refused to move. After a period of time, someone finally asked her why she wouldn’t get up and she replied, I’m waiting on them to vacuum the floor. You have no idea how strong our routine is until you try to fight it.

April 4, 2016

Am I going to die from some form of dementia? Maybe, or a door from a passing airplane can come loose and fall onto your head and kill you. Now if the same person would have asked me if they were going to die, I would have answered, yes someday, we all die.

So much time, especially in the early part of your diagnosis, is spent on the topic of death. Those thoughts run through our mines until we get tired of thinking about it and move onto something else. If we were in excellent health you wouldn’t be worried about dying in a car accident or falling down an elevator shaft so, why worry about something so gloomy when you get diagnosed with dementia.

April 4, 2016

Is it possible to be too optimistic or cheerful that it offends others? I believe there are some people that are so miserable in their life they are living, that they have a hard time believing someone can be happy even living with dementia.

They can’t seem to find that one little spark that gives their life meaning, and they give up. The want everyone to follow them but it doesn’t work like that. Those of us that found peace with our disease can’t help but be optimistic.

We find ways to enjoy our day that you will never see or feel. We escape into our own little world and feel safe there. We are able to tune out your world and find happiness in ours. We don’t let the stress bother us because we no longer understand it.

April 3, 2016

Now that I have my new computer up and running, I can return to what I love to do best and that’s raising dementia awareness. So many arguments are started because people don’t know how to communicate with someone with dementia.

Why can’t you get it through your thick skull what I’m saying? Unfortunately, we got it but don’t know how to process it. Your tone of voice only indicates your wish to argue.

You are looking for an instant reply and when you don’t get it, you fire off another question or response that only adds to the agitation. Think before you talk, saying I didn’t mean that doesn’t work because we know that is exactly what you meant.

Slow down and give us time to understand what you said and give us time to form some kind of answer. Stop playing the, I didn’t mean that game. It only leads to hurt feelings and agitation.

April 2, 2016

Agh!!! I got a new play toy last night, a brand new computer that is faster than a speeding bullet, more disk storage than a family of five could ever use and more memory that could hold all Donald Trump’s insults. Why am I sitting here with my old computer and not playing with my new one and the answer is easy. I need to get a stupid video cable to use on this new and wonderful toy.

Hazel is working and can’t take me for a new cable so I just have to sit here and practice patience which is something that I am not used to doing. Could be my imagination but I swear that computer is calling to me and asking why I’m not trying it out.

April 1, 2016

I was reminded that if you are not a member of our club, you will never understand what it is like living with dementia. The day you were diagnosed with some form of dementia, you became a member in our club. We hold the knowledge necessary to understand our disease and lead to a cure. You need to join us to get this information and enter into our world.

It’s discouraging to see the membership growing because it reminds us that we are nowhere close to finding a cure but together we are finding ways to live with our disease until that cure is found. We will celebrate the day when our club folds up and there is no longer a need for it.

March 31, 2016

My first attempt at writing a poem to my care partner, lover and wife Hazel. When we fell in love and got married, we never thought of the hardships dementia would create. She made a vow that we would make it to the end, together, walking hand in hand and I couldn’t think of a better way to say goodbye, “while I still can”.

Saying Goodbye

It’s hard to say goodbye in the autumn of my life
When I look, into the blue eyes of my wife
You know the day will come, when we will meet again
But the pain will last, because you know, not when
Our life was good, and I have no regrets
And my thoughts return, to the day we met
Our love is strong
But will it be enough, when I’m gone
We fought the fight, knowing we wouldn’t win, but together we made a team
That made it to the end

March 31, 2016

Have you ever tried a little kindness to get through your day? We try to fight and resist the things that bother us and maybe a little kindness won’t solve the problem, but we may walk away feeling better about ourselves.

March 31, 2016

Why do caregivers make living with dementia so hard for us? We hear them say how much they miss us because our disease is taking us away from them. In our minds we are still here and may not understand where we went.

They tell how hard this disease is on them and we feel guilty for doing this to them. We see the bitterness in their eyes because we put their life on hold.

Is it my imagination or is this true? Don’t get me wrong, caregivers are the most important person in our lives and they do the best job they are capable of, but they are not as good as we are at hiding their feelings.

March 30, 2016

Headaches from the stress of living with dementia and nightmares in your sleep to remind you that you have Alzheimer’s. I’m told that nightmares are not a symptom of Alzheimer’s because the book said their not.

We are supposed to forget things and not remember the things that scare us during the night. Take a pill and things will get better. But what happens when they don’t?

Like most of us we don’t say anything because we don’t want to take anymore pills. We smile and pretend all is ok and dread when we need to sleep again. We are afraid that our disease is progressing and causing the nightmares which leads to the headaches during the day.

I roll my eyes when someone explains to me what living with dementia is all about because they cared for someone. Share one of my nightmares with me and feel what I feel then thank the Lord you don’t have dementia.

March 30, 2016

I just completed my first Letter to the Editor of our local newspaper in response to a reader that disagreed with my optimism on living with dementia. He sees no light and only despair watching his wife’s disease slowly take her away from him.

I understand his frustrations and my heart breaks along with his, but you have to understand that your emotions will rub off on the person you love and she will live your miseries.

I try to give hope but there are some that don’t want it. They deal with whatever disease they are facing by lashing out at others. That is how they are protecting themselves from the pain we feel.

I don’t get angry when someone doesn’t agree with what I am saying because they have that right. I can feel their pain by looking into their eyes and only wish I would be able to help them.

I wish our caregivers did not have to go through what we do, because we are better at dealing with it and adapting to the changes.

March 29, 2016

It’s not always sunny when you walk down the path of dementia, there are many dark tunnels that you walk through along the way. You never see anybody coming from the opposite direction which leads me to believe, I’m on a one-way path.

We never meet any one that was cured so we just keep walking. We collect many fond memories along the way and meet some of the most interesting people that are waking just like us.

We may look lonely but we aren’t, we have our memories with us and inside we are happy. I’m told the path is shorter for some but we all meet at the end.

There are those that don’t believe this path exists and never get to walk on it. They never see the sights we see and only reach the end. Life is too short to not stop and look around and enjoy it.

March 28, 2016

Did you ever wonder why a magnet sticks to metal? I never did, I just know it does. The same is true for someone living with dementia, you never wonder why we do the things we do, you just know we do them.

You just deal with these things on a daily basis never asking, I wonder why he does that. Your plate is full with caring for us that you don’t have the time to wonder why we do the things we do.

That is one of the main differences between someone that simply cares for us and one that understands us. The special ones are those that can do both, are you one of them. If you would like to become one, talk to us while you are caring for us.

March 28, 2016

Have you ever noticed that the biggest and sturdiest of tress are the ones that are able to bend in the wind? Trees that are ridget are the type that breaks when a storm comes and falls to the ground.

People are like that; you need to be sturdy but able to bend whenever a crisis enters your life. Caregivers must have the same qualities as the sturdiest of trees. They need to be strong but able to bend and go with the flow.

It doesn’t matter how strong you are, if you are not flexible, you will break when a storm comes.

March 27, 2016

Watching the sand fall through an hour glass representing my life, is how I feel living with Alzheimer’s. You look at it and don’t see much of a difference until you look closer and see the sand falling and the top half is ever so slowly empting.

Like an hour glass, my life is falling away. There is no way to stop the sand from falling so you just watch it fall. Piece by piece your memories are slipping away and it is only a matter of time before there is no more.

How full your life is and how many memories you have, determines how big your hour glass is. There is no way to determine how fast the sand is falling; you just know it is.

March 26, 2016

Please, just listen to me, don’t try to fix me or make me feel better, I just want to tell you how I am feeling. This is how we feel when we try to talk to you, our care partner, and you go into fix it mode.

You completely miss the message because you want to stop our suffering and make us feel better. You stop listening to us and what we are saying preventing us from giving you a better understanding about our life.

We soon learn to not bring up the subject again and learn how to shut down the communications between us. You get upset because we never talk any more without realizing that when we talk, you never listen to what I am saying.

March 25, 2016

I still believe in you; do you still believe in me? I have changed in so many ways and sometimes, not for the better. Did this change your attitude toward me or were you able to understand what Alzheimer’s is doing to me.

We have a tendency to look for physical changes in the progression of any disease and dismiss any mental conditions. How many people say, “she is getting really nasty” without looking for any reason why.

We think that it is just the way she is getting and not realizing the struggles she may be having or the help she is crying out for. Believe in me and when you see a change, look for the reason why I’m changing. Help me without me asking.

March 24, 2016

You think it is hard living with dementia, get over it, it’s only gone to get harder. We think it can’t get any worse, then it does but we find a way to deal with it. It is called adapting and we all do it without thinking about it.

We spend so much time worrying about our disease that we sometimes don’t think we only need to adapt to it to ease the pain. When we are hit with a crisis and survive, we never stop and think how we made it through it, we just worry about the next one.

Use what you learned when the next crisis comes and don’t worry about getting over it. Life is teaching all of us lessons.

March 24, 2016

One of the favorite topics at a High School graduation is, follow your dreams. In order to have a happy life you need to follow your dreams and not someone else’s.

As we age, we forget this advice and begin to go with the flow. Maybe our dreams are put on hold due to the pressures of life and later we wonder what would have happened if we would have only followed our dreams.

Then the day comes when we get diagnosed with some form of dementia and it appears all our dreams get shattered. Someone needs to stand up and tell us, we are never too old to follow our dreams. I am a dreamer and work hard to follow them.

March 23, 2016

We all know what it is like when we climb our mountain after a long struggle. We have the greatest of feelings because we completed something that we never thought we were able to do.

There is always a low to the highs and that may be the day you step on the edge of your cliff and you are looking down. Your heart is racing and you think your problems will be solved if you take one tiny step.

When you are living with dementia, you visit this cliff often. Many days you just want to give up because you are at the end of your rope and there is nothing more to hang onto.

You may make the difference if I step off or not. Help me find a reason to go on and prove to me that, someone does care. Caring for someone may mean that you will need to stand beside me on my cliff and help me take a step back.

March 22, 2016

Have you ever listen to someone in the medical profession explain why we have short term memory problems but are capable of remembering events that happen years ago? I did and had no idea what they were talking about. I don’t have a medical background and that may explain why I was having problems understanding them.

Now if someone with dementia explains it, it makes sense to me. Whether it is true or not may be debatable but let me give it a try. It is my belief that your brain is modeled after the Public Library filing system.

When they get a new book, they catalog the book and give it a location where the book will be stored. This location number will tell you exactly where the book is stored so you can retrieve it and use it. After the book is read and returned, it is returned to the exact location in the library.

Now the fun part, your brain receives a memory and it is also cataloged and stored somewhere in your brain. When you want to retrieve a memory you use the brains file system to get the location of the memory in your brain to find the memory.

Dementia is not happy with the efficiency of this filing system so it prevents memories from being cataloged before they are stored in your brain. When you try to remember something that happen recently you can’t because there is no way to find it, It was never cataloged before it was put on the shelf.

That is the reason why you can remember things that happens years ago but not what you had for breakfast.

March 21, 2016

When you look out across a field in the Fall, do you see the end or a time of rest and a new beginning. I think it depends how you look at life. Walking down the path of Dementia is no different than any other path, there is an end.

The day will come and you will reach the end. The question that may be unanswered is, is this the end or a time of rest and a new beginning? Do I have the right to say what happens when I reach the end of my walk or did I even think about it?

No one wants to think about this or even talk about it, but that path you are walking will not continue forever. What are you going to do when you see the end of the path?

March 20, 2016

I know what I want to say but I just can’t put it into words. I want to communicate with you but don’t know how. This is frightening when you are living with dementia and know you are losing the battle to communicate.

You are falling into that void where sight and sound doesn’t exist. Maybe you can write your thoughts on paper and take your time doing it. I find that I very seldom write anything in cursive rather I print each letter individually.

I wish the brain power of the world would come together and finds more effective ways for people living with dementia to communicate. I honestly think learning simple sign language would be a giant step in the right direction. Some say that it is too difficult for their love ones to learn because they already tumbled into the void and I’m sorry but we need to find better ways to communicate instead of finding ways why we can’t.

March 19, 2016

Have you ever been given a diagnosis of an incurable disease with a very dark outlook for what your quality of life will be? There are no survivors and the only hope you have is death will come before you suffer too much.

Every day you fight your fears in what you are becoming. They keep coming and start to get worse until the day you find your inner peace knowing that you can’t be cured and you turn to enjoying the days you have left.

You relearn how to smile and adapt to the losses you had. You found peace and adjusted to this long lonely walk.

Then the day comes when you read the headlines in an article that tells you that a cure was found for your incurable disease. You don’t bother to read the article because it states a cure was found.

This terrible weight that you have been carrying is lifted and all the fears and frustrations will no longer be there. The memories that you lost will return and you will find an exit on the road of dementia and you will be the person that you once were. Your dignity will be returned and you will no longer need to worry about the stigmas and myths that go with living with dementia.

All the people that abandon you will return because you have been cured. Life is going to be so good.

At this point one of two things happen. You read the article and see that it starts in the small print, words like, may, could, someday or maybe it tells you that it is promising. Never does it tell you where to go to get this cure.

The second thing is a retraction later that is a much smaller article, with no big headlines, stating that test failed on this cure but they are getting closer. Once again you realize you still have a incurable disease and you are going to die.

This second realization is ten times worse than the day you were told you have some form of dementia. All the progress you made in finding peace with your disease was erased and pure bitterness sets in. You may not have enough time to regain your inner peace and may die scared.

I hope this explains why I get so angry when a read about the silver bullet that was found that will cure my Alzheimer’s. People think they are giving us hope even if it is false hope. If we had any hope at all, these articles will take it away from us and makes us start all over again. Most of us can’t do that and we simply give into our disease.

March 19, 2016

Once upond a time 50 years ago two young naïve kids from different worlds went against the advice of so many and eloped to bond their love for each other. We had $60 between us and some very big dreams that we wanted to share.

We weathered some very big storms and never forgot the love we shared. We never once thought of giving up but on ways to improve what we had. We worked so hard to adapt to the differences in our lives and never once reminded the other of any shortcomings we had.

Alzheimer’s was never a part of our dreams but when it came into our lives, we vowed to work it out together. We never had a boss between us but the cards always fell in her favor.

I can no longer promise you another 50 years Hazel but can promise that the love we share will never die and together we will make the most of what we have left.

March 18, 2016

Walking toward a better life can be an adventure. There are so many lessons along the way that you need to learn before you reach your destination. Living with dementia for 12 years, I am only scratching the surface in understanding it.

I spend time in the pits of Hell trying to understand why we go there and found so many different ways to break my heart. I need to do this so I can explain to you what living with dementia is all about.

Reading a book and experiencing firsthand the hardships of dementia is two entirely different things. It is so hard to experience the raw emotions of dementia by picking up a book. Most books only give you the view of someone caring for us.

They may tell you about how we woke up in the middle of night with a cold sweat but never do they tell you WHY we did. This is the stuff only we know.

March 18, 2016

I feel so powerful since I found the means to block people from my life. Today I blocked someone from my Facebook page for trying to sell their worthless junk on my page.

I looked at the list of people that I blocked and most of their names I can’t pronounced, that were blocked because of the trashy stuff they were selling and then there were the people that just irritate me and I tired of arguing with them.

I find it is better for me to remove them from my life then to allow them to ruin my day. Removing the things in your life that upsets you will lessen the stress you are under and help you find and keep your inner peace. Try it, it is so much easier then arguing.

March 17, 2016

My suitcase is filled with information that I will be passing out tonight at our mentoring meeting that I hope to be not only educational but give hope to those just starting down the path of dementia.

When I was first diagnosed with Alzheimer’s, I had no one to talk to that was living with Alzheimer’s and still enjoying their life. Times are changing and more of us are breaking down the stigmas and myths concerning our lives and able to answer those hard questions everyone is afraid to ask.

Of course we are not qualified to answer legal or medical questions but we can tell you how we adapted our lives to create a life after our diagnosis. We can tell you about the changes we made and what worked for us. We give you something to think about with the message, if I can do it, so can you. I wish everyone could attend and learn it is ok to say, I have dementia.

March 17, 2016

I have Alzheimer’s but I still know how to have fun. I’m a kid in a man’s body and not afraid to laugh at myself. I refuse to let my disease control me and laughing and enjoying life is my way of telling the world after 12 years of living with the diagnosis of dementia of the Alzheimer’s type, I will do things my way.

Some people are a joy to be around and I want to be one of them. I want people to know they can forget they have dementia for a time and just enjoy themselves. Help me put a smile on someone’s face and let them know it is perfectly ok to laugh.

March 16, 2016

Just because you were able to visit the world I live in and think you understand it, don’t be surprised the next time you visit, it changed. My world changes as I progress with my dementia and it may be different then what you know.

The thing about dementia is, it’s never the same. It may appear that I have learn different things to frustrate you but it is only that darn disease. All that book learning you did may have gone out the window and a new book may need to be read.

You may never find the answers you are looking for and may need to accept the fact, “it is what it is”.

March 16, 2016

How many of us push ourselves to our breaking point and feel remorseful when we break it? Maybe we let the frustrations build to a point when we finally yell at the person we love who is living with dementia.

We stop and take a step back thinking, what am I doing? We start to punish ourselves for being so callous not realizing we played right into the hands of dementia.

We allowed dementia to take control of our life and we are not the one diagnosed with it. Dementia doesn’t care who life is ruins. We are not kidding when we tell our care partners they need to care for themselves before they can care for us. Take a break and always remember, you also have a life to live.

March 15, 2016

The great pretender, we walk around pretending everything is ok, but inside, our life is a turmoil. In a couple days, along with Mary Howard, I will be speaking to another group at the Lancaster Health Campus in Lancaster.

I want to keep our talk fresh but stick to the theme of there is life after your diagnosis. This is the night when we open up and talk about what it is like living with dementia. My ultimate goal is to watch everyone leave with a smile on their face and carry the attitude, if he can do it, so can I.

I want to stay positive with the message that there will be many changes occurring in your life but by adapting to these changes, you can live a wonderful life.

These talks are my effort to mentor a group with information and resources to start them down this road we call dementia. We average around 40-50 people and it appears to be growing. More people are starting to speak out about living with dementia and should consider starting a group talk in their area.

March 15, 2016

I loaded several digital electronic apps onto my tablet to rekindle the love I have for electronics and going through the formulas that I used on a daily basis, I found I no longer understood them.

I looked at the digital diagrams that was once my lifeline and could not follow them. With a sadness in my heart, I come to realize that although I look and feel fine, I am losing this battle with Alzheimer’s.

I have no regrets because once I was one of the best and able to think the way a computer does. Sometimes it is best not to try to rekindle an old love because both of you have left the other behind.

March 15, 2016

We slip away and no one notices. They see us and just think we are having a bad day not realizing this is our new normal. We talk about this new normal but what exactly is it?

We have our highs and we have our lows but we also have the time in-between where we just flatten out and we call this our new normal. As time progresses, our highs are not as high but our lows get lower and creates a new normal for us.

We think we may be having a string of bad days but it could be we are adjusting to a new normal. It may be hard for you to see these changes because you do not want to see them, but over a period of time they become noticeable and you finally see the lose we have been feeling.

March 14, 2016

There goes my reason for living. Maybe you lost your driver’s license or some other skill you once did and you feel this way. Stop and think how much do you think your life is worth?

Is your life only worth so little compared to the things you are still able to do? How much do you love yourself and what value do you put on yourself? Disappointments in life are just that, we can’t let them ruin all the good things that are around us.

Saying goodbye to the things we once did, is so hard to do.

March 14, 2016

How does one get motivated when the only thing they want to do is sleep? Yelling at them to do something is not going to work and may only make the condition worse. Letting them work it out for themselves isn’t likely to work either.

Changing how they live may be the answer you are looking for. Try playing music they like that has a faster upbeat melody to it or increase the lighting around them by sitting in the sun or turning on more lights.

Gently encourage them to do the things they enjoy, have them tell you a story of some event in their life or have them show you how to do something that they are capable of doing.

Get them away from the things they are hiding from and back into the mainstream of life.

March 13, 2016

Spring ahead, time to turn your clocks ahead one hour for some reason I long forgotten. It’s also a good time to replace batteries in fire alarms and if you are like me, twenty-seven thousand clocks.

I end up changing batteries in clocks I never look at but keep because I like them. The changing of the season also brings so many changes I need to adapt to. It will no longer be dark outside at 5:00 and I will finally be able to do my daydreaming outside.

I sit on my bench alone, but I’m not really alone. I still have the memories I can relive. When I’m doing my daydreaming, I am back in the 60’s and thinking about the interview I had to become a printer apprentice.

We were carefree without a worry in the world and the love of my life was my 58 Chevy that I was customizing. Then I met this girl that turned my life upside down. We came from different backgrounds and it took a while before she saw my charming ways.

She played me like a fiddle and molded me into the person I am today. We eloped and will be celebrating 50 years of marriage this week. So you see, when I’m sitting on my bench all alone, don’t feel sorry for me because I am not alone.

March 12, 2016

Sudden changes in our lives occur, without us even knowing it until we look back and notice them. We struggle with words and can’t seem to finish that sentence although we know what we want to say.

Things are not so easy to do anymore, like tying your shoe or remembering to feed the dog. We need those gentle reminders to make us think we still remember.

We need the type of help that doesn’t appear like we are getting it, even though we need assistance, we see ourselves as being independent. I hear so many people tell me they feel worthless and can’t do anything.

When you are caring for someone, you need to be careful you don’t care to much and take away their feelings of independence.

March 11, 2016

When I look at my facebook profile picture, I picture a honkey tonk barroom piano player with arm bans on his arms. When we look at someone, we sometimes picture that person to be someone different than what they are.

This is especially true when we look at someone living with dementia, we see someone that is not the person we think we see. We only see the physical person and not what is inside them.

If you could read their jumbled thoughts and feel the frustrations and fears that they feel, you would be looking at a completely different person. We only want to see someone “normal” and not someone fighting dementia.

Next time you look at someone with dementia, use some of your others senses then the sense of sight. Try reaching out and feel what they feel, listen to the tone in their voice and not just the words. Don’t pass judgement on them simply with the way they look.

March 11, 2016

Faded pictures running through my mind that I know are there, but I can quite bring them into focus. I remember parts of events or people in my life put can’t see the whole picture.

I may remember a name but certainly not the face. I may remember some event but not who was there or where it was. These are the fading pictures in our lives that someday will be completely erased.

Dementia works like that; it takes away just enough to let you know it is doing it. Not hiding but removing it completely from your memory. We don’t mourn the lost memories because to us, they never happen.

March 10, 2016

One of those days where my brain needs to know, “why do onions make you cry”? They look harmless but some, not all, will bring tears to your eyes. During my research I found that when you touch them, they give off a sulfuric acid which make you cry.

They sit there and make you think they are sweet and harmless but unknown to you they have found the answer to make you cry. They are sitting around so many picnic tables just waiting on the opportunity to give off their sulfuric acid and make you cry.

Now that I have found the answer to that, I now wonder why so many people I know remind me of an onion? I can only imagine the uproar this will bring because of my inquisitive nature.

March 10, 2016

I have to be careful this year, it seems there is a lot more skin exposed on the top of my head getting sun burned. I’ve been working tirelessly outside the past couple of days trying to clean up the winter debris so they can come and edge my flower beds not realizing I need to wear a hat.

It wasn’t that long ago I was complaining about the snow and it being so cold and now I’m worrying about my head getting sunburned. I work for ten minutes and then sit down and enjoy the sun for half an hour. I think I drink more coffee on a warm sunny day.

Even the squirrel is getting bold, I can be sitting on my bench and ten feet away he is “stealing” my bird feed. Life is good when you can sit there and various birds are feeding. Some of the prettiest red cardinals visit the bird feeders along with so many other song birds. I have to be careful, I’m beginning to enjoy “working”.

March 9, 2016

I lost that feeling and I’m trying so hard to get it back. My inner peace was taken from me and replaced with uncontrollable anger that you don’t see but lies just below the surface. At any moment it can surface and overtake all my emotions.

I can forgive the hurt they caused me but not the fact they were able to rob me of my inner peace. I am trying to let it go but I can’t. I worked through many tears to finally find my inner peace to have it taken away in a split second.

There is no remorse because they have never found their inner peace and realize what it is like when you lose it. They are simply drama queens that their only purpose in life is to hurt others.

I will once again find my inner peace and distance myself from the drama queens that are only looking to take it away again. The question without an answer is, why do they do that?

March 8, 2016

Have I told you lately that I love you? I heard that song and wondered how many of us take love for granted. We know you love us but we need to hear those words because we are so insecure about our life.

We need to be reinforced that our life is still meaningful and telling us that you love us, gives us a purpose to hang onto. Strange thoughts go through our minds and we need to be reminded of so many different things.

I often talk about how lonely we are when you are sitting right beside us, I know the physical contact but I need that emotion support and hear those words. Don’t wonder if you told your loved one that you love them lately, do it know and make both of you happy and secure.

March 8, 2016

The groundhog was right, and I was wrong. Are you happy now? Someone living with dementia will never tell you they are wrong, but you can’t deny that Spring is in the air.

I was told to be patient but my Alzheimer’s prevents me from being patient. I don’t understand why things can’t be accomplished without studying it from every possible angle.

At times it appears to me that we don’t want to accomplish progress, we just want to study it. I’ll leave that up to the people that do those things and go outside and enjoy the life I was given.

March 7, 2016

Fighting the stigmas and myths about dementia is an ever ending battle. One side of the coin implies everyone with some form of dementia is either confined to a bed or incapable of thinking for yourself.

The other side of the coin says that if you don’t look that way, you must not have dementia. We can’t win when we are talking to people that are ignorant on what it is like living with dementia.

So many look at us and see the person they think we should be and not the person we are. If they would take the time to know us, they may find out that they really do like the person we are becoming.

Help me do away with myths and stigmas by talking with someone with dementia and watch their eyes. They will shine when the tell you how they are adapting to their new life. Our life is not all doom and gloom.

March 7, 2016

Front page, “above the fold”, a dream come true. Facing the Future is an article that was published in our local newspaper about my work raising dementia awareness.

The article is called "Facing the Future" and was not written about me, but the message I carry.

To read the complete article, just click HERE.

 

 

March 6, 2016

My spelling is not so good anymore and my grammar ain’t as good as it used to be, but I seem to get my message across without too many of my teacher’s getting hissy fits.

It seems I’m going back to the days of spelling with phonics and spelling words the way they sound to me. If my spell checker doesn’t mind, it is good enough for me.

This is a good example of allowing me to do the things I love, even though I may be wrong in the way I do them. I’m 12 years down the road of dementia so I can afford a little slack.

So many of us give up the things we love to do because we can’t do them as well as we once did. Maybe someone is always correcting us for doing it “our way” and not the proper way but what matter does it make? I may not be around when my grades come out, so why would I care?

March 5, 2016

The people in my life explains why I have such a wonderful outlook on life and why I found my inner peace. When I am at my lowest, they are there giving me the courage to face my problems.

Most of my friends I have never met but they formed a bond in my heart and always say the words I need to hear. They may live miles away, or continents away and their culture may be so much different than mine, but we share a connection that is meant to be.

I will never be able the thank you in person but I know you are not looking for thanks. I can only pray I can return the love and support you show me in your time of need.

March 4, 2016

I am so excited, I heard today that the Lancaster Newspaper will be running a front page article on the work I do for bringing dementia awareness this Monday. The photographer was here today and took many pictures. It could not have come at a better time.

March 4, 2016

When you walk through the Pits of Hell, it is a scary hopeless place to be. You can’t breathe and your thoughts are taken from you and replaced with the vision that this is where you belong.

You feel trapped with nowhere to go. During you journey with dementia, you get to visit this place frequently and each time it gets harder to return. But return you must because you don’t belong there.

You need to make the effort to climb out and not return. Sometimes we get pushed into that hole by people that know they can. Once you return from the Pits of Hell, you must face the people that pushed you to ensure they never do it again.

Standing up to a bully that only wants to abuse the elderly or someone that is cognitive impaired is the best way to say, “I will no longer tolerate it”. You are well on your way to telling your dementia, I want my life back.

March 3, 2016

When you walk alone, you are never alone, those single steps of footprints you see may not be yours but someone carrying you. This was the case today when I was walking alone and praying for relief from the anger and hostility that was in me.

The voice of reason spoke to me and asked me why I was so angry and I told him my brother died and no one told me until I read it on Facebook even though he lived only 15 minutes away from me, I was unable to say goodbye and bring closer to his death.

He reminded me that we said our goodbyes when my Alzheimer’s started to advance and I was afraid we would never have the chance. The anger was lifted from my shoulders and I only felt the hostility in me.

I then reason that my family did not prevent us from saying goodbye because we already did and they did it for their own personal reasons. There is nothing I can do about that and if they have any religion in their heart, they will be answering for that later.

My mind cleared and the hostility was gone. I only feel pity for their souls.

March 3, 2016

I’m often asked to talk about the dark side of Alzheimer’s. What happens to us when the shadows overcome us and takes away our resistance to control our disease and it begins to speak through us.

I am living that right now and through the pain I am trying to hold the anger that is taking over me. I am fighting to understand why people treat us this way knowing we have dementia.

I can only assume they are ignorant to the disease and have no idea what pushing the wrong button will do. You have to live through this before you can understand the cruelty some people enjoy.

I will overcome this because I don’t want to live like them. They are ignorant to the fact that they are making me that much stronger and determined to fight the bigotry towards people living with dementia and believe me I will.

Family members are the cruelest because they know your weaknesses and know how to use them against you. Now is not the time but I will be addressing those issues in the near future. For now, I need to find a way to control my anger before it overtakes me.

March 2, 2016

Family can be so cruel and they do things that will never be forgiven. Last night my older brother passed and I was never given the opportunity to say goodbye. I turned on my computer and the first post on my news feed was a post by my younger brother stating what a sad day it is because his brother passed away last night. He was also my brother.

My family has never come to terms with me having dementia and forever try to punish me because of it. I will say a prayer for my brother and keep him in my heart.

I fight this bigotry all the time by it hurts when it hits home with family.

March 2, 2016

Are the spiritual needs of people living with dementia being met? Are they able to hear the words of their Lord or are they being separated from this comfort as their disease progresses?

We tend to not think of our religious needs while caring for us even though we have always had the need to worship. Do we drift away from our religion as our disease progresses or is that the last thing we cling to when we die.

When you are wondering how to give comfort to your loved one, maybe sharing a prayer is the answer.

March 1, 2016

Have you ever talked with someone that lost all hope and are just living for the opportunity to die? You walk a tightrope between trying to help them and leading them closer to the edge.

Your actions and patience will say more than any words that would come out of your mouth. You have to put yourself in their shoes to feel their pain. They are not looking for advice or a way out of their problems but validation of their feelings.

You are not qualified to treat them but you may be qualified to be a friend and listen to them. I cried with many because I felt their sorrow and walked with them during this time in their life. This life of caring is not for everyone and will leave a mark on you that you will forever carry but it is worth every heartache it created for you when you walk away knowing you made a difference.

March 1, 2016

Maybe if I just sit here and be quite, no one will know I have no idea what they are talking about. I try my best to process what they are saying, but when I do, they are talking about something else.

Sometimes while they talk they raise their voice and I can’t figure out if they are mad or just excited. I start to get confused and my head hurts. Should I sit there and try to listen or should I drift into that safe place where I can let my thoughts settle down?

Most times I will sit there and protect myself by allowing my brain to float free. They will probably just think I’m not paying attention and not even know they are driving me to a meltdown. How you talk and the body language you use, will determine if I stay a part of the conversation or not. If I get that far away look, you will know that you lost me.

February 29, 2016

When I was diagnosed with dementia, I thought I was given a death sentence. It doesn’t have to be because many live 20 years or more with their diagnosis. I plan on being one of them but it will be a lot of work on my part.

I need to exercise my body and my brain. It is so easy to fall into that, I don’t want to do that routine, and before you know it, you lost all your motivation to go on living. You may as well just lie around and wait to die.

Exercising your brain is difficult because you start to convince yourself that you can’t do something. You are an excellent teacher and your body begins to believe you.

Don’t wait until you enter your late stages and say it’s too late because chances are that it will be. Keep active socially and try new things. Just because you have dementia doesn’t mean you can’t learn something new. Don’t wait until it is too late before you start reaching for that 20 year mark.

February 28, 2016

When you are inside looking out, it is so different then if you were merely looking in. This World of Dementia I live in cannot be explained in words. Time stands still and you can be locked into one thought for hours.

You try to peer out, but the fog you are in is so thick, it won’t let you. Your world slowed down to a point where you don’t move for hours. Your thoughts are still processing but at a much slower rate.

You are not in pain; you have no feeling at all. People around you talk so fast that you may only catch a few words out of their sentence. They assume you don’t understand failing to understand they were unable to communicate with you.

The fast pace of your world is not tolerated in mine. We will shut down and turn you away.

February 28, 2016

People that know me can tell you how upset I get when someone tells me how to live my life. They try to tell me how to act and talk because I should fit within the mold they see.

I have dementia and dance to an entirely different drummer than they do. They become so miserable because of my dementia, that they lost the concept that it is my life to live however I chose.

I have to live my life the way it fits within my dementia and not be the same as everyone else. I may have found my peace while others are still looking. That doesn’t mean that I don’t face the same fears, it means I have learnt to live with them.

February 27, 2016

The Tears of Dementia is an imaginary book I am writing describing the dark side of dementia. It tells of the fears we face when we enter into the fog we walk through. It tells about the times we walk up to the edge of the cliff and look down wondering if it would be better to step off.

You will be taking off your rose colored glasses and seeing dementia for the first time, the way we do. You will see and feel what drives us into that part of our brain where no one can reach us.

Did you ever wonder what we are looking at when we get that far away look? Where are we when you talk to us and we don’t respond? We haven’t begun to scratch the surface of what it is like living with dementia because you are unable to understand such fears exists.

February 27, 2016

There ain’t no way to hide your dementia. Sure you can pretend you don’t have it and try your best to not let people know what you do, but it always catches up to you.

It pops up in the way you talk or act and someone always notices. I did it but I still don’t understand why we feel we need to hide the fact we have dementia. To live with dementia, you need to be stronger than most because of the hardships you face every day.

Next time someone tries to tell you how lucky you are for having a mild case of dementia just ask them, would you really like to trade places?

February 26, 2016

If you want to learn all about dementia, read The Book of Hard Knocks by the people living or caring for someone with dementia. In this book you can find all the sad stories and how people adapted to their disease.

It’s free but you can’t get it in any book store, you need to talk to someone living this disease. They can tell you from their own personal experiences every good and bad thing about dementia.

It should be on the Best Readers List because you cannot find any more factual information than from the “horse’s mouth”.

February 26, 2016

We own the words we write but not the thought that generated the words. Many of us share the same thoughts and may write about it to find out that someone else wrote something similar.

You may get upset because someone stole your thoughts, but remember everyone living with dementia share those thoughts. Some of us are still capable to put those words down and we need to share these thoughts with others.

I encourage everyone living with dementia to keep a journal and write down their thoughts even if it is only one sentence. I date each entry and have my own personal means to track the progression of my Alzheimer’s.

It soon becomes a hobby and an excellent means to exercise your brain.

February 26, 2016

I get so excited when someone asks if they are allowed to translate my thoughts into their native language. My answer is always the same, anything I write may be shared.

I am humbled that other countries view my thoughts as being worthy to share in their country. Dementia is an international disease and we are working together to bring awareness.

We may speak different languages but there is no difference in how we suffer living with dementia. The world is coming together to help us all live with dementia and just maybe we can begin to live in peace.

February 26, 2016

I’ve been blessed with a string of very good days. I know the string is due to be broken and I’m waiting for that other shoe to fall and put me into the dark place I go to.

There was a time in my life when I would worry about when this would happen, but I’m too busy trying to continue my string of good days. I don’t have the time to worry about the “what if’s”, so I don’t.

We spend so much time worrying about the things that are out of our control that we allow ourselves to be drawn into the darker side of dementia. When I’m asked if I’m ever serious, I tell them I can’t be, I have dementia.

February 25, 2016

When you build something, you start at the bottom and work up. The same is true when you are advocating for dementia, you need to start at the bottom to learn what you are talking about.

So many want to start at the top and just give their views. They may have a limited view and only see what they experienced. They never learned that each one of us, living with dementia, is different.

They become hot air and have nothing to show for their efforts. So many talk about dementia without doing anything to improve our living conditions. Talking is one thing and doing is another.

February 25, 2016

Somewhere down the road I will not be able to make decision for myself. I will be nearing the end of my journey, not able to see where I came from. I will see people around me shedding tears and not understand why they are crying.

I want to reach out and comfort them, but I don’t know how. My concerns are not about myself but for those with tears in their eyes. The end stage of dementia is so confusing to me because I see a new life opening up to me, but why is everyone crying?

I wish I could tell them everything will be ok but would they believe me? I never believed them when they were telling me that all these years living with dementia.

Maybe once we meet again, we will have the time to sit down and tell each other how foolish we were for wasting so much time worrying about things we could not change and not spending that time enjoying each other’s company.

February 24, 2016

Could it get any worse than it is? This is one of my favorite dementia pity parties to attend. We all talk about the things that our disease has taken from us without mentioning the things we can still do.

What would life be like if we had dementia and was also blind or deaf? I have a hearing loss but I’m always able to hear that constant buzz in my ears. When the power goes out in the house, the quietness unnerves me.

I get lost in my thoughts but if I was unable to see, I could never find my way back. I was told it all depends how you look at things and this is so true. Maybe I should attend the parties where they talk about the things they can still do.

February 24, 2016

Unanswered prayers….
How many of us prayed that it would be over because we thought it couldn’t get worse? Living with dementia, this is a common prayer amongst all of us. The crisis passes but very few give thanks for not answering our prayers.

For some reason we tend to think all our prayers should be answered and then get angry when they are not. There must be a philological reason for this but it is my belief that the person upstairs just says, ignore him, he is talking nonsense again.

Most of the best things that happen in our lives is because our prayers were not answered.

February 24, 2016

Have you ever experienced the emotions of dementia? If you were diagnosed with some form of dementia or cared for someone with dementia, the answer is, yes I have. These emotions are felt deeper than most people feel.

How do you ever describe the feelings of hopelessness when you are trying your best and it just seems like it is not enough. How about the feelings when you finally realize you have an incurable disease and there are no survivors?

You ask the question, “what am I going to do” when you know there is nothing you can do. That is only one of the many emotions we feel while dealing with dementia.

For the advocate, they are trying so hard to raise their voice and no one seems to be listening. Baby steps are being made but that isn’t enough. Our care partners run out of tears because our dementia dried them all up. For the person living the disease, they keep sliding, unable to stop.

Emotions play a very big part in living with dementia and finding ways to deal with these emotions has to become a priority. We have to discover that artificial sun that gives us hope and makes us smile.

February 23, 2016

So many people look at dementia through different eyes. Just ask a group of people how they would like to see funding being spent and you would be surprised how many different responses you get.

Most will say research but what kind of research. Some will say that more money needs to be spent on finding a cure and others might say it should be spent on trying to find ways to live with their disease.

Then there are people like me that realize I will not live long enough to see a cure or have the money to get it when one is found. What would they cure, I have a degenerative brain disease and the damage could be beyond a cure?

There are some that would like to see money spent on preventive measures but there is no way to tell what causes the disease, so finding preventive measures may have to wait.

Which form of dementia should we spend the funding on? There are so many different forms of dementia it would be hard to pick which one. So many questions and not enough money.

I will leave this to be debated by others and stick to trying to change people’s attitude toward us living with dementia.

February 23, 2016

I was going through my blog looking for quotes I could use and came across this entry that I posted a couple years ago. I am so glad we took the step to reconcile any differences we may have had because Patty made the effort to understand my world and helped me find my inner peace.

You could be telling a similar story if you could learn to let bygones be bygones and reconnect with someone that was once close to you. Sometimes you need to give a little before you find happiness.

January 26, 2014
I am so nervous and maybe just a little afraid. What do you say to someone whom you haven’t seen in 15 years even though she is your own daughter? Will she be disappointed in the person Dad became? If Hazel and I did our job right and she stuck to her values, I have nothing to worry about.

I already know she has a wonderful loving family and a son she is very proud of. I on the other hand have been living with Dementia for nine years and went through so many changes. Will she understand that although I no longer recognize her, my love for her has never changed?

So many things are going through my head right now. I want my daughter back and never want to lose her again.

February 22, 2016

I’ve been neglecting my woodturning and it’s about time I return to it. I always wanted to turn a flower but it always seemed to escape my ability. Many contortions of flowers went into the burn barrel until yesterday with the help of my son-in-law Keith, I was able to make a half decent impersonation of a tulip.

I call it my prototype and today I hope to turn one without the flaws I see in the prototype. I feel ambitious and plan on turning a vase to go along with it. I refuse to let my Alzheimer’s stop me free doing the things I love.

I accept the fact that I may need a helping hand and it doesn’t lessen the enjoyment in doing it. With a whole lot of luck, in a couple days, I hope to be able to post a picture of the most beautiful tulip in the world, I ever saw. I just hope my burn barrel stays empty.

February 21, 2016

If I forgot my past and a miracle pill would be found to restore my memory, what would I remember. The memories that are gone is due to the degeneration of my brain and cannot be repaired.

I guess I would remember nothing, crystal clear. My mind is full of foolish thoughts like this and I can’t imagine being restored to my former life. I’m not sure I would want to return to that life.

You see, I’ve found my inner peace and would not give that up for anything. I know you have pity for me because of the life you assume I am living but physical life is so different than my mental life.

My life is so different then everyone else even with the hardships of dementia, I found a way to live with it and not fight it.

February 20, 2016

What an absolutely beautiful afternoon I had today. I grabbed a hot cup of coffee and Jade and I went outside to sit on my upstairs deck in a brilliant cloudless sunny day.

We still have patches of snow on the ground but Jade loved laying on the deck soaking up the sun. I bundled up and uncovered one of my rockers and relaxed like I haven’t in months.

With a slight breeze, I listened to the wind chimes playing their music and watching the limbs in the trees sway back in forth. I have Alzheimer’s, my life is not supposed to be enjoyed like this.

My mind cleared and I daydreamed of improvements I want to make in the yard this year. After a while I realized it is still winter but not before I was able to enjoy my short vacation away from dementia. I guess my respite is sitting on my deck and letting nature recharge my energy.

February 20, 2016

Everyone wants to go to heaven, but nobody wants to go now. If we would have the right to die, would that decision be able to be made more easily? I’m not talking about having the right to make that decision but putting a loaded gun in someone’s hand.

Everyone already has the right to die, it’s called suicide. I know I’m going to be tarred and feathered by my belief but when I hear about the excitement of a HBO show concerning the right to die, I need to speak out.

Don’t tell me how hard it is living with this damn disease because I have been living with it the last 12 years and spending every second promoting life and not giving up.

You own that right to take your life but we don’t have to glorify it. I will never condemn someone that makes that decision because I know how personal it was to make it. I respect them but it breaks my heart because we could not provide a reason to live.

February 19, 2016

I came down with a bad case of cabin fever. I want and need to go outside and soak up the sunshine and rekindle my friendship with the birds. I look out my kitchen window, watching the various birds feeding at my one feeder and they are beckoning me to come out and join them.

It’s getting close to the end of February and still a little too early to enjoy those peaceful times sitting on my bench, but my mind is drifting toward the day I can. The snow is all but gone and I can start to walk around the yard looking for the first signs of spring. My heart will skip a beat when I see the first crocus breaking through the ground announcing the arrival of spring.

I always rush the season and then we get another snow storm to whip me back into reality. That’s ok though because I am thinking about spring and not my Alzheimer’s.

February 18, 2016

When is it the right time to tell your friends and relatives that you were diagnosed with some form of dementia? The right time is when it is right for you. You may want to tell them right away or tell them when your disease progressed until you can no longer hide it.

Once you work up the courage to tell them, several things may happen. They may wrap their arms around you and give you the support you desperately need or the cold and heartless people will walk away and let you suffer on your own.

Most will not know what to say and may act a little strange around you, but that doesn’t mean that they don’t love and support you, it just means they need time to process what you told them.

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When you build your support group, let the cold and heartless walk away, they will never add to your support but only add to your heartaches.

February 17, 2016

It is so easy to be happy when you are at peace with yourself. I can’t stop talking when someone asks me what I have to be happy about. I know I have Alzheimer’s and all that horrible stuff people tell me is going to happen to me, but my love for life outweighs any rumors I might hear.

You might think I live in a fantasy world and you may be correct, but what a wonderful world it is. I am able to enjoy the littlest of things and see and smell what the world is really like.

I don’t need to pretend to be anyone except for the person I am. I found happiness in my world, please don’t take it away from me. Let me be happy.

February 16, 2016

Someone driving with dementia is one of my favorite topics to talk about because it gets me into so much trouble. I no longer drive because I am an unsafe driver. Now I never said that I was unable to drive, just that it is proven I can no longer drive safely.

In my mind I think I am a safe driver because I know and understand all the rules of the road and never had an accident since I started to drive at 16 years old. I believe I could get behind the wheel and pass a driver’s test under a controlled condition. Unfortunately, most conditions are not controlled while driving.

Your cognitive abilities are a major factor in determining whether you are a safe driver or not. Do you have the reaction time to safely handle an emergency or the ability to process the thoughts fast enough to avoid a collision?

You may think you do but take a cognitive test and let the results determine if you drive or not. Being able to drive does not make you a safe driver. I know of several incidents where someone turn onto a highway going in the wrong direction.

February 16, 2016

Some days it is hard to shake the fog that surrounds me. I found out over the years not to fight it but let it work its way out of me. Today is one of those rainy dreary days and it is best to sit back and find something to do.

Rainy days has their purpose, to wash away the dirt and grime of the snow and my foggy days always brings me out into the sun. It is always a better place to be, once the fog lifts and I see things more clearly.

If I never experienced the fog, it’s possible that I would never recognize the good things around me. Maybe the fog I walk in is not a bad thing but a way for me to clear my thoughts and start another day.

February 15, 2016

I can make you cry when you think there are no more tears to shed. I can make you feel a hatred that you never thought you could feel. I can bring you to your breaking point with stress and frustrations. WHO AM I?

Some just call me dementia, but I’m known under so many different names. You don’t even have this disease but your effected by what it does to you. You watch me do my dirty work and there is nothing you can do about it. You feel completely helpless.

Millions of people go through this everyday of their life and there is so much to learn to try to put a stop to it. We are making progress, but we are not even close to being able to say we see the end of dementia coming. Take my hand and lets work together to speed up this process.

February 14, 2016

Yesterday I tagged along with Hazel to do some marketing at the Lancaster Home Builders Show at the Lancaster Convention Center. Hazel and her co-workers were marketing for HR Block and I was doing some dementia awareness marketing.

I am in my glory when I am talking to people about dementia. So many eye brows went up when I told them I was diagnosed with dementia, probably Alzheimer’s, 12 years ago.

I was out selling the idea of having their business become dementia friendly. I was not only selling the idea of dementia friendly marketing but how they could help the dementia community without it costing them anything.

With a little training and a big change in attitude, could bring in a lot of business by becoming dementia friendly and letting people know that their business carries the label of being dementia friendly.

February 13, 2016

What will it be like when I have a healthy body but not a healthy mind? I wrote this post on June 6, 2014 and didn’t have the answer. I now know the answer because my diabetes, blood pressure and most of the other body functions are under control except for a healthy mind.

Most of the questions I ask today will be answered sometime in the future and most times not with the response I want to hear. You can run away but never escape the grasp dementia has on you.

I could stop living and complain how much my life has changed and how unfair it is living with dementia, but I chose to play out the hand I was dealt and see what life brings me.

Today I ask the question, why would I want to live with a healthy body when my mind is still declining? I guess I will need to wait a couple year before the answer comes to me.

February 12, 2016

When is the last time you had a panic attack because you thought you forgot something? Did you turn the stove off or brought in the dog before you left to run errands?

In my case, I either did or I didn’t, I never have thoughts whether I did something or not and that creates a huge problem. Simple tasks like those are never left up to me because I never get those panic attacks questioning me if I did them or not.

So many time I forget to do something and I’m told, you’re getting so forgetful. Maybe I didn’t forget but my brain never processed the order to do it. Just sitting here trying to rationalize why I’m getting so forgetful.

February 12, 2016

I bounce down the path of dementia without my seat belt on. I don’t have a care in the world unless someone tells me. My life is simple because I don’t get involved in things I no longer understand.

Even with this disease I am happy. My life is blessed and the riches I have are priceless. I drank from the fountain of awareness and walked away with the knowledge that there is life after your diagnosis.

My friendships are international regardless of race, color or beliefs. No matter where you come from or language you speak, we are bonded by our disease. This world we live in is not govern by power or greed but a willingness to work together to make it a World With Dementia.

February 12, 2016

Someone just walked over my grave, a penny for your thoughts, so many things we once said but got lost in the passing of time. When we do remember, we can sometimes put a face on the person that is saying it.

Memories are precious but what happens when they start to be erased from your mind, not forgotten, totally erased never to be found. Alzheimer’s is known as the forgetful disease but we don’t forget, they are taken from us.

Maybe that is why we don’t get upset when we forget something, in our minds it never happen.

February 11, 2016

There are days when I say to myself, I can’t go on. This little voice in my head responds back and I hear, why. Now I don’t know what to say, because I don’t know why I want to give up, maybe I’m just tired.

I should tell you that this little voice in my head has a really bad attitude when it comes to hearing me say that I feel like giving up. Sometimes it is best if I listen to my little voice and not what I think, but other times my stupid pride tries to win.

I think we all have this little voice talking to us when we are going to do something really dumb, and chose to ignore it. I know my voice as a name, it could be my conscience.

February 11, 2016

When is it time to give up the things you love to do? This is a hard question to answer because it depends on who is asking the question. If it is a caregiver asking the question, they ask because they want to protect you from embarrassing yourself.

We no longer get embarrassed due to our disease, so we only make the people watching us feel uncomfortable. I was standing in front of 40-50 people and forgot what I was saying. My mind went completely blank and didn’t know what to say next.

I could have given up and walked out of the room, but I took a moment and demonstrated that this happens to all of us living with dementia, and I moved on with my thoughts on dementia.

Is it time for me to stop public speaking because of this or do I just deal with it? Ask my care partner and she may give you a different answer, but I don’t think so. I will not give up something I love because it made you feel uncomfortable, I will only give it up when it becomes unsafe or I can no longer find a way to overcome it.

February 10, 2016

I don’t understand the politics of dementia. My State of Pennsylvania can’t even pass a State budget; how will they ever decide how to handle the crisis of dementia.

I’m a story teller, not a politician. I can tell my story and they politely listen to what I am saying but they refuse to do anything with the information I am giving them.

I believe our government has become so dysfunctional that they are only interested in playing politics than what they were elected to do. Change will only happen at the ground level and not at the government level.

February 10, 2016

You may be able to talk the talk, but are you able to walk the walk. Maybe you can say the words I say but can you see the horrors I see.

Remember the days when you rode a roller coaster and you are sitting in your seat making that slow climb to the top knowing that drop-off is awaiting you. Your heart begins to beat faster and although you know the drop is coming, when you crest the top, one of two things happen.

You may throw your arms in the air and enjoy the free fall or you grab the sides and scream with panic. We, living with dementia, ride that roller coaster every day of our lives.

We face those choices every day and need to choose between those two. The chose is easy if we accepted our disease and adapted to our new life.

February 9, 2016

The emotional reality when your loved one can no longer remember your name can be the worst memory you will ever live with. Read that sentence again and you will see that I never said “The emotional reality of your loved one no longer remembering who you are, can be the worst memory you will ever live with”.

Two sentences that I hear all the time that are similar but completely different. The truth is, we may no longer remember your name, but we will never forget who you are.

How could we ever forget who you are, you are a part of us. I may forget what those things are called at the end of my arms, but I will ‘know’ how important my hands are.

The day may come when you walk into the room and I will not notice you, but if I do notice you, look into my eyes and you can tell. It may be the hint of a smile or a tear reminding me that I forget your name. I will try, to the best of my ability, to display the emotions needed to let you know that I love you.

February 9, 2016

When I was diagnosed with dementia, I was like a new infant born into a new world. I had no idea what this new life was going to be like, or how I was going to live with Alzheimer’s.

I was fortunate that the people around me allowed me to discover this new world on my own terms. They never put me where they thought I should be but left me find my limits without holding me back.

So many are not that fortunate, people read about this disease and assume I should be somewhere on the path. They are often surprised with the things I can still do, because the book says I shouldn’t be able to do that.

Book learning may be good, but learning the reality of this disease is better. My life and my world is so different now, and you have to learn the things that I am learning. I believe the hardest part in caring for me is learning my world is different.

February 8, 2016

Sometimes you have to see the dark side of your disease before you are able to see the things you still have. We fall into that, in between stage where we don’t see how bad our life could be or how it really is.

We complain because that is all it seems we are able to do. We blame everything that goes wrong in our lives on our disease, without trying to help ourselves. It is easier to sit back and complain rather than doing the work to make it better.

We seek a better life and perhaps it is right before us. Open your eyes and look around, is a better life within your grasp and you just don’t see it? Sometimes a change in your attitude is all that is needed to clear your vision.

February 7, 2016

When I look at a map of the United States it appears to be a short distance from one coast to the other. The same is true when you look at dementia and it appears to be a short distance between diagnosis and the end stage until you start walking between those two points.

It may take you forever to walk between the coasts and the same is true with dementia. It all depends how many times you stop and smell the roses.

February 7, 2016

After living with Alzheimer’s for the last 12 years you would think I would know a lot about this disease. I do but I’m always anxious to learn more concerning dementia. I read a blog by Robert Bowles that drew my interest into learning more.

He wrote about Freezing of Gait (FOG) in Parkinson’s Disease. This is a condition when someone living with Parkinson’s gets up from their chair and their feet are momentarily “glued” to the floor. I witnessed this many time in nursing facilities and assumed it was a muscle cramp and never thought it could be related to a neurological condition.

I research this condition for several hours to gain more knowledge on FOG in Parkinson’s Disease and found several tips concerning what Robert wrote about. Many nursing facilities put blue painters tape on the floor in front of a resident’s chair so when they get up, they focus on stepping on the tape to get moving.

Another says they use a laser pointer and have the person step on the dot on the floor. Robert tells that he rotates his knees to help him get moving.

You can learn so much by listening to someone living with dementia even if you are living with the disease yourself. You may think you know so much concerning your disease but you are only scratching the surface when it comes to dementia.

February 6, 2016

Denial and anger go hand in hand when you are told of your diagnosis of dementia. So many people are saddled with these emotions before their journey even begins. When you talk to them, the only thing you can do is listen to them. Now is not the time to reason with them and try to help them.

Talking to them may only increase the anger and make it that much more difficult to deal with. Once they get over the shock that this is happening to them, they begin to question, why me.

The door opens and they may let you in so you can begin pulling them out of their denial and start helping them to face the future. You will become the brunt of their anger and it is important you remember what you are trying to do.

This is the first time in your life you are facing dementia and not talking to the person you love. What comes out of your loved one’s mouth is pure emotions from their disease and not meant to hurt you. They are reacting to the fears they are feeling and anger is the only response they know.

This is why I am so successful talking to people with dementia. I went through the same thing they are going through and know what they are thinking. I have no emotional ties to them and I don’t let their anger influence me.

Mentoring programs need to expand to help not only those living with dementia, but also the people caring for them. Mentoring is not for everyone because you need to remember that the mentor may also be in need of someone to mentor them. We all need someone to talk to and not judge us but also be willing to listen and not lecture us.

February 6, 2016

Do you realize I tarnish my reputation by being me? People look up to me and I’m supposed to conduct myself in a professional manner, but that ain’t going to happen.

I’m told that I’m nothing like the person they thought I would be when they meet me in person. I can’t figure out what I’m supposed to be like so I just embarrass everyone by just being me.

I’m one of those new breed of people that found happiness while living with dementia and not ashamed of it. Break the mold and start enjoying life.

February 6, 2016

This is insane, I’m sitting here listening to Jerry Lee Lewis’s greatest hits and trying to type. My mind is listening to the music and my fingers are trying to type. The things I do to entertain myself.

It doesn’t cost me anything to be happy, I just need to let go of my inebriations and just go with the flow. There is no right or wrong in my world, just what makes me happy.

I can be having the time of my life and you don’t even know it. You are so focused on the bad things of dementia that you can’t see the things that make me truly happy. My computer is going crazy trying to correct all my typos but don’t blame it on me, blame it on Jerry Lee Lewis.

February 5, 2016

I'm always asked. "what's your secret to living a long life with dementia", and I answer, "I keep breathing".

February 5, 2016

I am over my sniffles and feeling pretty good about the world in general. My nose stopped running and once again I can touch it without saying oww. When we were boys and had the sniffles, we were told to get outside and play, now the world stops and all your attention needs to be on me.

I miss the rough days of yesterday and by today’s standards, I wonder how we ever made it pass second grade. I spent many hours outside playing in the dirt and no one ever told me to get out of the dirt. I wonder if they still have dirt today.

We splashed in puddles never worrying about catching a cold, we only worried about keeping our ears warm. We never knew about dementia and the fears it would cause, I miss those days.

February 5, 2016

Someone called me a philosopher and I got so angry, I thought they were calling me something dirty. Hazel said let’s look it up in the dictionary and explained to me what it meant. Why do people need to use big words when they could just call me a smart aleck?

February 5, 2016

I spend a lot of time trying to remember if I like broccoli or not. Some people spend their time deciding on million dollar decisions but not me. I’m content trying to figure out this broccoli puzzle,

When you are living with dementia, the things you worry about is small and trivial. I could spend hours watching a drunk lean against a wall and waiting for him to drop.

The world is spinning around me a million miles per hour and I’m content watching a leaf blow across the ground. I think I reverted back into my childhood, don’t buy me an expensive gift when the empty box will make me happy.

Your time and mine is so different. Don’t expect me to try to keep up with you, you need to slow down to be with me.

February 4, 2016

The pain never goes away. After caring for someone with dementia for so many years, and they pass on to a better life, a ton of heartaches is lifted from your shoulders or does it. Along the way you have made friends with so many living the life you once did that you continue to hear their heartaches and it never gives you time to heal.

During the time caring for someone, you heard the same stories but found a way to cope with them but now it becomes unbearable. You had to stay strong but you used up all your strength with the responsibilities that fell on you.

It breaks your heart that your new friends may think you abandoned them because your crisis passed. Now is the time you must learn the lesson that dementia will drag you down even though you don’t directly suffer from the effects of it.

You need to take a break from dementia and rebuild the life you may have given up due to caring for someone with dementia. You owe it to yourself to pick up the pieces and keep moving forward. Don’t get stuck in the ruts of dementia because that is not what life is supposed to be.

It’s possible that you will someday raise you voice and return to raise dementia awareness based on the learning you received. Living with dementia I feel I can speak for all of us and thank you for giving what you did but now is the time the sun comes out and YOUR life goes on.

February 4, 2016

I laughed when I heard, “what’s his name posted something interesting yesterday”. He remembered my post but not my name. I believe that is the way it should be. Story tellers want their stories to be remembered, not necessarily who told them.

I know there is such a thing about being accountable to what you say but not taking glory in what you say. The message has to be more important and remembered.

Earning the key to the men’s room in Heaven is more important to me than having someone remember my name. So if the time comes when you no longer remember my name, that’s ok, just remember the message I gave you.

February 4, 2016

I have Alzheimer’s, I shouldn’t have such high hopes for the future. When the sun is shining in the front window and I’m sitting in my chair with a hot cup of coffee, my thoughts and dreams turn to what I want to do this summer.

I get excited thinking of ways to out think my friendly squirrel and ways to improve my sitting area I have outside. I do my best dreaming, sitting on my bench under that darn tree, but sitting in the sun, indoors is a close second.

Every year I wonder what I will plant in my vegetable garden but always end up planting whatever the garden center has left. I dream a lot, but seldom plan ahead. I’m even excited about mowing the yard again.

February 4, 2016

I don’t care what the groundhog or anyone else says, I think spring is coming. This year I may take off my shoes and sox’s and skip barefoot in the grass, although I need to be careful because I share the back yard with my dog Jade.

Every year I plant an Alzheimer’s garden with plenty of purple flowers and just a pleasant place to sit and wait to see what the day brings. I miss sitting on my bench and watching the world go by.

I am prepared to fight with my neighborhood squirrel that steals the food out of the bird feeders but that is half the fun in sitting outside. He/she always finds a way to out think me, but I welcome her back every year. I have high hopes for my garden and can’t wait to see what shapes I see in the clouds.

February 3, 2016

Is it wrong to wish it was all over? I don’t think so, we all think that, myself included. We are not wishing to end someone’s life but rather the pain and sorrow to end.

We have that thought, then guilt washes over us and we feel terrible thinking we are a horrible person. Why can’t we hate this disease without being ashamed at ourselves?

As long as it’s not destructive, you need to release the pressure of stress that is building up inside you. They tell me a hot Calgon bubble bath does wonders. Complaining how much stress you are under will not make it go away, only you can, it will always be in your head.

February 2, 2016

I’m healthy as a horse but I’m still going to die because of my cognitive impairment. You talk about a doctor appointment that takes the wind out of your sales, this is it.

I read the complete book and this is not supposed to happen. After 12 years, I should be incapacitated somehow, but I still keep floating down the stream. If I would be retested by doctors that don’t understand my cognitive short comings, they would assume I’m healthy as a horse and tell me that I don’t have dementia at all.

No this did not happen to me but I know many people that got retested and got results that the doctor interpreted as being non-dementia related. We spend our lives raising awareness to the general public and it is my belief that we should spend time educating the medical profession.

This is what happens when I get bored and I’m unsupervised, I start to rattle cages. There are many in the medical profession that are qualitied but an equal amount or more that really don’t know and understand dementia. They are too busy and set in their ways to take the time to understand what people with dementia are saying. They may be passing on false hope that isn’t there.

February 2, 2016

I want to be as sturdy as an oak tree or as flexible as a weeping willow, but I have Alzheimer’s and live in the moment. The moment dictates how I feel. I can no longer wake up in the morning and say, I’m going to be happy.

My mood can change in a fraction of a second and I may become this person that is hard to like. The opposite is also true, I may be angry one minute and not understanding why you think I’m angry the next.

We think we are in control, but really we are not, our moods and behaviors can change without you even realizing it. Caring for us is difficult because you have no idea what is coming and the many mood changes make it so much harder.

February 1, 2016

I have trouble with numbers so I work with spreadsheets. I have trouble with letters so I write. I have problems thinking so I sit down and design a web site or web application.

You say you can’t do that but after living with my diagnosis of Alzheimer’s for 12 years, neither should I be able to. The point I’m making is, I know my weaknesses and exercise those areas of my brain to strength them.

No magic pill, just work on my part. You can’t wait until your disease advances to the point that you are unable, you must start from the day the doctor tells you those dreaded words.

If you were a social bug, become a better one, it doesn’t matter what you do, just keep doing it. Then tell everyone of your accomplishments, let them know that there is life after your diagnosis.

January 31, 2016

The only thing standing in the way of me having the perfect life is, I carry the diagnosis of dementia, of the Alzheimer’s type. All my needs are being met and my doctor visits are all favorable, so why do I feel incomplete.

It’s just this slip of paper that has dementia on it that prevents me from having that perfect life. Why do I leave that diagnosis create such a burden on me that makes my life less perfect?

So many of us are hung up on the diagnosis and what lies ahead that we fail to let ourselves have that perfect life. The future will unravel and we have no control over it, so let’s put that diagnosis in a safe place and get on finding that perfect life.

January 30, 2016

What do you tell someone that just been diagnosed with Dementia? They don’t want to hear that everything will be ok, they know better. They may not believe their diagnosis or maybe they don’t want to talk about it. They may just want to hide from it and maybe it will go away. This is why a mentor program is so important. A person you can sit down with that will not sugar coat your illness but will also give you hope. Someone that will listen to you and either answer your questions or lead you to a source that will.

You can get on the internet and read everything you can about Dementia. There are many reputable sites that will offer valuable information but there is just as many that offer either misleading or just plain trash. A mentor program can get you started in the right direction.

You can make a difference in so many lives if you start a Memory Café and a mentor program in your local area. Help those starting out in this journey by teaching them that there is life after their diagnosis and they can live an enjoyable life.

January 30, 2016

It hurts, but somedays I need to walk alone. I fall so deep into my world of dementia that there is no room for you. This is my fight, not yours. This is when I either face my fears or succumb to them.

Even though I walk alone, I know you are with me. If my faith and will is strong enough, I will climb back out and you may never know that I fell. So many times we walk alone without the faintest of hints that we are alone.

I am not afraid of walking alone because I know I have the strength to keep walking until you catch up.

January 30, 2016

When someone living with dementia is telling their story, they open themselves up to a lot of hurt. Not because their story is painful to them, but it may be to the one listening. So many times we are asked to change our story to make it easier to listen to.

At times it seems it is more important to be politically correct then accurate. I am a story teller and refuse to changes my thoughts on dementia. How will you ever know what our lives are like if I try to paint a pretty picture and sugar coat how we live?

I want to be remembered as someone sitting on a tree stump and telling you his thoughts on dementia. I want to invite you into my world and let you decide what my life is like. I will never force my thoughts on you, but hopefully give you something to think about. My thoughts belong to me.

January 29, 2016

So much help is available but no one seems to know where to find it. We suffer needlessly and a simple phone call may solve our problem. This help is useless unless people know about it and how to get it.

When I speak to a group, I have available to them hundreds of resources where they can get help. I pass out a list of grocery stores that make deliveries and various help line phone numbers. Literally hundreds of phone numbers for financial aid and where to get day care.

The question may be, where did I find these phone numbers and resources? I concentrate on local agency like our local Department of Aging, United Way and the Alzheimer’s Association. I spend a lot of time researching on the internet for these number, so I can make them available.

If everyone would have these unknown resources, we could have a better life living with our disease.

January 28, 2016

Persons with dementia, may experience fear and confusion especially when they are having a nightmare. Their nightmares are very vivid and real life to them. They may 'act out', to protect themselves against perceived dangers. When they see someone approach, they may delude that they will be hurt unless they 'lash out'. They may respond negatively or violently when you try to waken them.

It’s important that you know appropriate communication strategies or how to respond to the individual's unique personality requirements. Of course, you have to understand 'anger' and 'aggression' is a person defense rather than 'violence'.

January 28, 2016

I think one of the worst things my Alzheimer’s has taken from me is having confidence in myself. I think I can’t do something because I don’t have the confidence in myself to even try.

There is no medication that I know of, that will build my confidence back up. I recognize this in so many people I talk to; I feel a need to drag out my soap box and maybe use some tough love.

So many times we allow someone to do things for us simply because it is easier. It is so easy to tell if someone is physically or mentally unable to do something or if they lack the confidence to try.

Always encourage your loved one to do the things they always enjoyed and help them build up their confidence. Helping them includes making them help themselves.

January 28, 2016

Am I dreaming my life away. What does it hurt if I sit in my chair and dream of a better life than the one I am living? I get lost in my thoughts and people begin to worry.

They don’t realize I am escaping my fears of living with dementia. They pull me out of my dreams back into the world of dementia. No longer am I visiting my thoughts of yesterday but back to the here and now.

The day will come when I forever stay in my dreams but rest assured, I am at peace living in my world of yesterday.

January 27, 2016

I have Alzheimer’s, nightmares and fears of the future but I’m still having fun. Sounds crazy doesn’t it, but that is how I make my life. No matter what is thrown at me, my sense of humor and willingness for adventure gets me through the bumps in my life.

When I enter into my late stage, remember I said when not if, I may no longer be capable of having fun, so I intend to have as much as I can while I can still enjoy it.

I visit a care facility and look around and ask, why aren’t these people having fun, are you putting them in their late stage before they should be. When you visit one of the Memory Cafes I am at, be prepared to have fun. We don’t sit around at look at each other.

January 27, 2016

Where in the book of caring for someone with dementia, does it say you have to be nice in asking for help. I wonder how much stress someone can handle before they snap, but no one wants to know the answer to that.

I hear all the time from care partners that they are caring for someone alone, because their siblings refuse to help. There is always a reason why someone doesn’t want to get dirty, but that doesn’t make it ok.

Refusing to help is not a convenience, it is a life changing decision. You we carry the load of your decision until the day you die. Something to think about when you say “I’m too busy to help”.

January 27, 2016

Yesterday I was involved in a discussion with a group of people living with dementia and we were asked what changes would we like to see concerning dementia. Each one of us gave a different answer and I realized how different each of us living with dementia really are.

Although each of us face the same fears and similar symptoms, we each viewed our disease differently. The saying goes, if you know one person with dementia, you know one person living with dementia. Each one of us is different.

I believe that is why people raising dementia awareness, advocate for what they see and believe. It seems everyone advocates for a different reason but for the same goal. Maybe that is why we don’t see the giant leaps we seek, because the progress is spread across what everyone believes in.

January 26, 2016

I’m standing on top of the mountain, not looking down, I’m looking up because there is more to climb before I reach my goal. I may be an overachiever but I will try my best to do my part in creating a better life for all of us living with dementia.

I look around and see so many climbing with me, with the same end in sight. Just because we have dementia doesn’t mean that we can’t be contributors to society, we just may have a shorter period of time to accomplish it.

Today I am taking off my advocating hat and slipping my motivational hat on to encourage all people living with dementia to do something today that they really enjoy. When you finish just think, you were part in the “I can do this” movement.

January 25, 2016

Music sooths the soul and it certainly does mine. I have a collection of 78’s, three stacks of 33 1/3’s, numerous 45’s and I can’t begin to count the amount of musical cd’s I own. I play them all hoping they never wear out.

I love instrumentals from the big band era and music from the 50’s and 60’s. Growing up, that is all I ever listen to and with my memory slipping back, I listen to the radio and when they play “oldies”, their oldies are from the 70’s and 80’s.

I just can’t relate to “modern” music so it was natural for me to fall in love with internet music stations that I can get just the music I love. Put on some Kenny G and let me kick back and I’m in heaven.

January 25, 2016

When Hazel is asked, “what is he really like”, she takes a deep breath and tells them, “he is a handful”. She loves me to death but also will admit I can be the biggest pain in the posterior as anyone.

She gets so angry at me at times, but is the first to come to my defense when anyone else does. After almost 50 years of marriage we not only grew up together but became reliable on each other.

She sees my dementia as just another way of life and almost never gets upset with some of the craziest things I do. Many shares the same love we share and face the future together. I would never be able to face my future without her.

January 24, 2016

I was outside today getting the necessary snow out of the way and took several breaks from shoveling to admire the beautiful day we are having. The sun is out bright, no wind and just a gorgeous day.

I’m not sure if my dementia or my tired body was telling me to slow down and look around. My neighbors probably thought it was strange watching this guy thoroughly enjoying being outside in the snow.

If I had a bench in my driveway, I would have sat down with my head back, and soaked up the sunshine. Maybe this is why I only got the necessary snow out of the way before my body gave out. Living with dementia is not all bad if you take the time to enjoy it.

January 23, 2016

I’ve spent the day looking out the window and watching it snow and now I’m sitting here wondering WHY. Last month at this time we were grumbling and growling because it was so warm right before Christmas.

So many people, including my daughter, wished it would snow. Well guess what, you finally got your wish. I put up a sign with FREE SNOW hoping someone would clear my driveway but so far, no takers.

Hazel told me not to go outside and shovel because it is still snowing and blowing so hard. Like I needed encouragement to stay inside. They say that no two snowflakes look alike and so far they are right. Hazel is home from work because of the snow, and I can tell, she is enjoying ever minute spending the day coped up inside with me.

January 23, 2016

I look out the window and get the urge to walk in the snow. The problem is, I have dementia and could put myself into a deadly situation. People with dementia have a tendency to wander and when the get outside, they lose all sense of where they are at and may seek shelter. Going back where it is warm and safe doesn’t enter their mind, they keep walking looking for someplace to rest.

Every year someone wanders off in a snow storm with drastic results. This year will not be any different. Tomorrow we will read the story in our local newspaper and wonder to ourselves, how could this happen.

If you know someone living with dementia, check on them to insure all is well. If you see someone walking in the snow, take the time to make sure everything is ok. Don’t rely on us knowing we could die in the snow.

January 22, 2016

Yesterday I had a doctor appointment and was told my blood test came back with favorable results. All other tests for high blood pressure and my diabetes indicate they are under control. Everything that is curable is under control but what about the things that cannot be cured? At face value, my doctor visit was wonderful.

Now when it come to my cognitive abilities, they are slipping. I am still losing my war against Alzheimer’s. That is what is so bad about having dementia, I have a degenerated brain disease but you cannot detect the damages it is doing.

I look healthy and those tests prove it but when you look at my loss of cognitive abilities, those test prove the degeneration is well on its way. I am healthy except for those things that can’t be cured. Life is strange and cruel.

January 22, 2016

Sitting back waiting on the snow fall is like trying to predict what my future will be like. It’s a guessing game no matter how you look at it. I could sit back and worry about the snow but what a waste of time if it turns out to be not as bad as I thought.

This is what it is like living with dementia, we worry needlessly about the future, not having a clue what it may be like. So many times I’ve seen reliable experts tell me what the weather is going to be, only to find out, they were wrong. Their intentions were good and came to a conclusion with the data they had.

You read books written by experts that describe the horrors my disease will bring me, but maybe they are wrong. For me, the best way to check the weather is to open the front door and look outside.

I don’t check the newspaper how my day is going to be, I pray for the best and deal with whatever comes.

January 21, 2016

I know little of politics, the stock market or world affairs. Heavens knows I can’t count backwards from 100 by 7’s. I seldom know what day; month or year it is because it is always changing. I tell time by looking out the window and see if the sun is shining.

Living with dementia, these things are not important to me. The world I live in is simpler and easier to understand. There is no stress in my world unless someone brings it with them when they visit.

Happiness means different things to different people and when you find it, you never want to give it up no matter what someone tells you. You may not see my happiness because you may not know what to look for. If I look content, chances are I am.

January 21, 2016

Somewhere over the rainbow is a World without Dementia. I know in my heart it exists but I’m unable to find it. In this world I can walk the streets and no one knows I have dementia, not even myself.

I feel safe and the feelings of loving warmth is all around me. I no longer live with the fears of what might lie ahead, I know I will be taken care of. The days of me beating the path to raise dementia awareness is over because there is no longer a need for that.

I was telling my vision to someone and he sat there listening to me tell my story and when I finished he gently took my hand and looking me in my eyes with tears in his, he told me that my World does exists, and it is called Heaven.

January 20, 2016

Just for the record, I am not lucky living with dementia and still able to read, write and talk. Fear not, the day we come when I will not be unable to do any of those. Luck has nothing to do with it but rather how far my disease has progressed.

We are so often compared to each other by the way we act rather than our condition. Each of us are different and even though we were diagnosed on the same day with the same form dementia, we may have been living with the disease prior to our diagnosis for many more years.

So many still judge us by the way we look and not by our cognitive abilities. We can’t get upset by these comparisons but double our effort in explaining what living with dementia is really like.

January 19, 2016

There are those living with dementia that chooses to live their remaining time in anger. For some reason known only to them, they feel they can be upset with the world and everyone around them. They have that right, it’s their life.

They do not have the right to take their anger out on anyone else though. These are the people that frustrates me the most because help is available but they won’t take it. I try my best to help them but there are times when I have to let them go before they drag me down with them.

We fight so hard to get a better life for all living with dementia and some will refuse to accept it. Advocating for awareness is hard when the people you are trying to help are the ones fighting the most against you.

After ling with Alzheimer’s for 12 years there is so much I need to learn about people. Resisting is easier then accepting help. I believe you need to want to be happy before you will be.

January 19, 2016

How do you know if someone living with dementia is in pain if they are unable to tell you? You need to be able to read their body language and not rely on their spoken words. Their eyes may tell you they are in pain but you may not have any idea what hurts.

Know how the person moves around or their changes in behavior is a big clue. If they stop eating it may not be because they are not hungry but rather their mouth hurts.

Don’t let a change in the person you are caring for go unnoticed, they may be in pain and unable to tell you.

January 19, 2016

Empathy, the ability to understand and share the feelings of another. Sympathy, the feelings of pity and sorrow for someone else's misfortune. Awareness, having the knowledge or perception of a situation or fact.

I think all three words are used when speaking about any form of dementia or cognitive impairment. Awareness is the one I like the most. You must show empathy in order to reach awareness.

Sympathy is the word I dislike the most when speaking about dementia but many still have this feeling when they think of us. The use of common sense, sound judgement not based on specialize knowledge, is seldom used when speaking of cognitive impairment.

We use all these fancy words and maybe we only need to use the one I can spell and that’s common sense.

January 18, 2016

I don’t wish for many things because my life is so blessed, but I wish I had the funds to have a mobile unit for giving Virtual Memory Tours. I could bring awareness to a different level by letting people have a glimpse inside my world.

The reality of virtual memory tours has improved over the years that they are beginning to simulate what it is like living with dementia in more details. When you take the tour, you feel the frustrations and agitations that we feel.

I never got excited with the tours I previously seen because I felt they really didn’t capture the emotions of dementia. They tried to simulate the physical conditions overlooking the feelings of the disease.

Someday the light bulb will come on when the concepts of Virtual Memory Tours become a common reality and what we are trying to explain to you will come to life.

January 18, 2016

What more can I do to bring attention to dementia awareness? I’m afraid of over exposure in telling my life story of living with dementia that people will get tired of hearing it and turn their attention to something else.

We are only on the leading edge of understanding dementia and have so far to go and so many more stories need to be told. Will any of us have the amount of time to fully explain what our lives are like before that ability is taken from us.

I think I may have tripped over another symptom of dementia that we rarely talk about and that is desperation. I am so desperate to tell my story before it is too late and I’m unable. How many more are there like me that are desperate to do something before it is too late?

January 17, 2016

There are so many things I want to do but they are either unsafe for me to do or I’m not capable of doing them. I would love to be free from the grips that Alzheimer’s has on me and not have the fears that I do.

It would be so nice if I could think freely and not struggle to put my thoughts together. I remember the days getting dressed and not asking for help. The little things you do so easily, I need to struggle to do.

Walking around in the sun without someone worrying that I may get lost and never found. I wish that you didn’t always have to be frustrated walking with me while I am living with dementia.

Alzheimer’s has taken so many of my precious memories but allows me to remember my fears.

January 16, 2016

Don’t ask why or don’t ask how, you will never get an answer to your questions. When you are finally diagnosed with some form of dementia, these are the first words that come out of your mouth.

So many seek answers to what is happening to them and go into disbelief when they find out. I still remember the feelings I had when I was diagnosed 12 years ago with dementia. I never felt so scared and lonely in my life.

Should I tell anyone or should I wait until later? How will my family react when they find out about my diagnosis? This is when the person needs answers concerning living with their diagnosis not have to wait until your next brief doctor visit or try to get your questions answered over the internet.

Then as your disease progresses and changes are beginning to happen in your life, once again you have questions but don’t know who you should ask. You may not even know what questions you should be asking.

Time goes on and you begin the later stages of your disease and end of life question start coming- up but no one feels comfortable talking to you about the things you want to talk about.

You may be fortunate to have a local organization to stop by your house and talk to you but most people living with dementia don’t. You may join an online support group to only find out it became a social group for caregivers.

We are so anxious in finding a cure that most of us will not be able to afford, that we are missing the boat in providing the answers to our questions during our disease. We need programs to help, not cure, people living with dementia. I know I am going to be bombarded with people telling me all about the organizations that are helping people but I never see them when I visit a care facility or hear about them until it is the fund raising season. Too many people live in fear and misunderstanding because we do a lousy job bringing dementia awareness. We work hard but there is just not enough of us raising our voices.

January 16, 2016

I wish I had a penny for my thoughts. Some are good, some not so and there are those that make no sense at all. Sure would be nice to walk around with a pocket full of pennies.

They tell me a penny does not buy much anymore but I remember all the time I spent looking at the penny candy jars and trying to make up my mind what to buy. For five cents I could buy an afternoon of enjoyment and share some with my friends.

I remember the days we shared bubble gum and when it got to me, all the flavor was gone. Back in those days we didn’t think too much about hygiene, we were just taught to share what little we had.

We always watched out for each other but the littlest one always got the blame when something went wrong. Times were hard but I sure do remember them as fun.

January 16, 2016

I stumble and fall and get back up again. I try something and fail but I try to do it again. Why do I do these things, I have Alzheimer’s. The answer is simple, I don’t want to give up and die.

Caring for someone with dementia is very difficult but at times, living it is much worst. You watch me decline but I feel myself declining. I am at a point in my disease where I still know what is happening to me and I can’t stop it.

There will come a time when I give in to my disease and let it take me where it wants to but for now, I am fighting it. My biggest problem is, I can no longer process how to do that. The will is there but the actions are not.

January 15, 2016

Qualifications to become a care partner.

Most people that assume the role of caring for someone with dementia have no clue what they are in for, their heart tells them that they can do this and they eagerly take on the task and responsibility.

Several meltdowns later they begin to understand what they took on and begin to wonder about their own sanity. Taking classes prior to taking on this job usually doesn’t happen because of the necessity of starting your new job “right away”.

Not that it matters or you will read and understands these qualifications before you take on caring for someone, I will try to list a few of the things you should know.

1. The person you will be caring for knows more then you and is always right.
2. Some, but not me, can be “bull headed” and argumenta.
3. You must have more layers of skin to ward off the friends and relatives that tell you what you are doing wrong without lifting a finger to help you.
4. You may no longer have a life, career or free time for yourself.
5. A long bubble bath or a short trip to the bathroom may not be possible because I may have the need to know where you are.

Knowing now what it takes to become a loving care partner, you may find out that this job was one of the most rewarding things you ever did and you are honored to have been able to do it. Go figure…

January 15, 2016

Interesting question, do I ever mourn the things I lost? I usually don’t try to think about it but if I want to be honest I would say that I do. I mourn the beautiful memories that are no longer part of me.

I didn’t forget them but rather they were erased from my mind. There is not a trace that they ever happen and I become sad whenever I try to remember because there is absolutely nothing to remember.

Maybe I make up things in my memory to replace the ones I may think I had. They become real to me because I can remember them. You may think to yourself or say to me, that never happen, but I am replacing the memories I lost.

The fish I caught gets bigger and bigger each time I tell the story but does it really matter if it is true or not? Of course it matters to you but to me it is now how I remember it.

To us, we are not trying to lie or deceive you in any way but it is real to us in the world we are living in. When someone you are talking to has dementia, let them tell their story or memory the way they remember it, don’t take away another memory because it may not be truthful. Enjoy the moments that you are connected to them.

January 15, 2016

There are some that explain forgetting as losing one’s thoughts. When you lose something, there is always the possibility of finding them again. Then there is the forgetting where your mind goes completely blank and there is nothing to find.

Such was the case last night when I was talking to a group of 40-50 people and mid sentence my mind went blank. For a second I had no idea where I was or what I was doing standing before a group.

Moments later I was able to compose myself and although I was unable to recall what I was talking about. I only knew I was there to bring dementia awareness. I demonstrated what living with dementia is really like.

I don’t apologize for the mistakes I make because how would anyone know what living with Alzheimer’s is like without seeing and hearing about it. I don’t want anyone to feel sorry for me when I lose my thoughts but rather understand this is my life living with dementia.

January 14, 2016

What do you say to group of 40-50 people that were recently diagnosed with some form of dementia? I look at the faces staring back at me and ask myself, if I was sitting with them, what would I want to know.

Would I want to hear about the disease or would I be more interested in knowing how I am living with my disease? I think at this point most people don’t want to hear about dementia but rather how will I ever deal with it.

Without putting on rose colored glasses, my main goal is to give hope and proof that there is life after their diagnosis. Tonight I will once again speak to such a group and tell my story.

I love the work I do and the challenges I face each time I speak to a group. It breaks my heart knowing they will need to climb the same mountains I did and face their fears, but the awards of acceptance and finding their inner peace gives me the strength and courage to face my next group.

January 14, 2016

I had someone come up to me and apologize how his spouse was acting because he was embarrassed by her behavior. I told him there was nothing to apologize for because she is living in her world and enjoying it.

She was telling me about meeting her husband at a USO event and how handsome he was. She was reliving some wonderful memories and sharing them with me.

I live in the world of dementia and I’m not offended or embarrassed by the stories I hear. I am just so happy that I was able to share their stories. Everyone needs to learn to relax, they are only stories. Listening to someone memories is an honor and one I treasure.

January 13, 2016

My life is rich even though I am living with this horrible form of dementia we call Alzheimer’s. No I don’t have money or the perfect health but I have something even better. I have the feelings of peace and being content with my life.

It hasn’t always been that way with many years of turbulence. Only because I accepted the knowledge that was there for the taking, was I able to learn what inner peace really was. As my disease progresses I will lose more control over my actions and may need additional care but for now, I am content with my life.

This is the message I try to relay to the people just starting out with their disease, don’t fear your disease but learn from it. You will learn what you are still able to do and the things that may be gone. Realizing that you have dementia and still able to do what you love is the greatest feelings one can have.

January 12, 2016

I get very vocal when a person living with some form of dementia whether it be Mild Cognitive Impairment (MCI) or the late stages of their disease speaks out on how they are effected and they get attacked for what they are saying.

I often get verbally abused for expressing my thoughts on dementia but unlike some, I am not intimidated and welcome the opportunity to pull out my soapbox and begin to teach dementia awareness 101.

I don’t get agitated when someone questions my thoughts but I do get upset with the fact they feel they have the right to examine my personal thoughts and try to make me change them. Like it or not, I have Alzheimer’s and my thoughts belong to me.

Like Norm Mac says, “why do I have to apologize I have dementia”. More and more people speaking out are being verbally attacked by a small group because they feel offended by what the person is saying. They may get intimidated by a small group and stop speaking out and withdraw into themselves.

We must stand up and stop these people from trying to voice their beliefs with intimidation on someone living with dementia. Bullying is a form of dementia abuse and we will stop it.

January 12, 2016

When Johnny Appleseed looks down at all the apple orchards growing, he is so proud of the seeds he planted. He was part of the benefits of these orchards. He didn’t plant them all but his spirit helped.

That is how I feel being an advocate of dementia awareness. When Rick Phelps asked me to consider joining a group he was creating called Memory People, I had no idea how my life was going to turn out.

Since those days, I have been a part of many groups and watched them grow. Not because of my leadership but the work of so many that made their group what it is. I am proud of the people I met along the way and how they grew finding their passion.

January 11, 2016

You were told of your diagnosis of some form of dementia and given a few minutes to let their words sink in. You sit there and think, ok I can do this until the reality of those words sink in.

You may be given some words of hope but you not are ready to listen to them. You just want to go home and get away from this. This is the period of time that no one knows how to handle the situation and when you need the help the most to start on your journey.

This is when you need someone to talk to without being advised what to do. You are not ready to listen to advise because of all the questions you have. You may not even know what questions to ask because of the turmoil going on in your head.

Wouldn’t it be nice to talk to someone that listens to you and only speaks when needed? They are there to help you work through all the questions you have and help you form a plan how you are going to start living with your dementia.

You are now walking on the path of dementia and finding ways to adapt to your new life. Sounds simple, then why aren’t we doing it.

January 10, 2016

This Thursday Mary Howard Reed and I speak with a group of newly diagnosed people with dementia at the Lancaster Health Campus. These meetings mean so much to Mary and I but also to the people we are talking to. I always wonder if I should talk about the disease or how I am living with it.

I figure these people don’t come to hear the facts on dementia but how we are dealing with it. My goal is to give them Hope and prove there is life after their diagnosis. I want them to walk out thinking, if he can do it, so can I.

Lancaster General Hospital started a wonderful program for people living with dementia. Not only do we have the opportunity to tell our story but they offer a 6-8 week course on the disease and living with it.

They offer care partner support meetings and our Memory Café that includes the care partner and the person living with dementia. We are working so hard to support all the needs for those effected with dementia. We are United Against Dementia and proving working together, we can improve the lives of everyone living with dementia.

January 10, 2016

When I look into a mirror, I often wonder if you see what I see or the person I want you to see. Do you see the little boy I became because of my disease or the person in a man’s body pretending everything is fine?

Can you see the fears I carry with me in my eyes or have I been successful from hiding them from you? It almost seems like I have a split personality, one is the person I am becoming and the other is the one I wish I were.

The time will come when I can no longer pretend all is well and I become this person that Alzheimer’s made me. Why do I feel the need to be the person I’m not, is it because I don’t want to face that I lost the war and I’m now under the control of Alzheimer’s?

I don’t dislike this person I became because I see a strength in him that was never there before. I see the determination to face his next stage and the next until the book closes. I see a completely different person then the one you

January 9, 2016

It starts with one person, then you find yourself telling your story to thousands. There are a few that don’t want to hear what you are saying but they don’t realize you are telling a story about your life.

Then you realize that your writings are being translated into several different languages and you begin to know that your story is making a difference in so many lives. It does matter what color you are or race, where you live, we all suffer from the same symptoms of dementia.

The need to learn is everywhere and awareness is all around us. A light bulb comes on, no matter where you live and you think, he is just like me. We form a bond and become virtual friends.

We are learning that dementia is a mind disease and not a mental condition. My mind is slowly being destroyed and I’ve lost control of the feelings of that part of the brain. We don’t forget memories, they are destroyed, they will never return. The destruction may affect our motor skills or numerous other emotions but we cling to the hope of a better life.

We get that hope from the people fighting for our respect and dignity. We may never know the person that finally finds the cure but we certainly know the men and women that are Standing Up and Speaking Out against our disease.

January 8, 2016

Several years ago I started to write a book called

The Tears of Dementia
the inside story

In all that time, that is all I have, just the title. The joys in my life seems to wash away the tears and prevent me from writing about the tears. Maybe if I would change the title I could write but that title spells best seller.

I seem to find happiness in whatever I do and lose interest in my best seller. I’m not going to change the title because deep down I never want it to be written.

January 8, 2016

Why do we have to carry such a heavy burden while living with dementia. We see what this disease is doing to you, you may have abandon your career to care for us or put your life on hold until this disease is over.

We carry this guilt and when we ask you about this you simply say, “because I love you”. Love is so hard to explain; a person will give up their happiness to care for us or maybe they feel like they are not giving up anything.

It has never been explained why caregivers do what they do. It is not because of duty because it is so easy to walk away from this disease. The only reason I can come up with is the love they feel for the person they are caring for. Love is such a funny thing; it means so many different things to people.

January 7, 2016

I’m starting my period of time being unsupervised while Hazel returns to work. For some unexplained reason she gives me the same “orders” before she leaves for work. The first is, behave yourself and second, don’t get anyone mad at you today.

Then she says, stay out of the kitchen and don’t play with the appliances. Then she throws in, nothing needs fixed and enjoy your day. What does she expect me to do all day.

January 7, 2016

Fiblets, white lies or withholding the truth, we all use them in caring for someone with dementia. Fiblets may be used to defuse a volatile situation and calm someone that is agitated. Fiblets should never be used to withhold information in a hurtful fashion.

We were trained from an early age never to lie to someone but dealing with dementia, it is best to avoid a person from reliving a painful memory if possible. In these cases, a little white lie or maybe a untruth is perfectly ok.

January 6, 2016

I am constantly jumping into my world and being pulled back into yours. I feel safe in my world and have a better understanding what is here. I don’t fear my world and start to think of it as my home.

I’m beginning to spend my time in my world and less in yours and that is ok with me. I feel safe in my world. I know you are walking with me but there are times when I must face my world on my own.

Sometimes I may spend too much time in your world and just want to go home. I tell you this but you don’t understand, maybe I’m trying to tell you I want to go back to the place I know as home and feel safe once again.

January 6, 2016

So many people caring for us living with dementia think that we always need to be busy. They see us sitting in a chair with that look that says we are a million miles away and think that if we were busy doing something, it would fix what is bothering us.

The truth of the matter is that our disease took us someplace and it may be the most pleasant place we have been in a long time. We may be reliving a part of our life without you even knowing it. As our disease progresses we spend my times in our dreams and less time in the real world.

You may try to get me involved in some activity but I may not be interested, I may want to return to the memories of long ago. You may sit with me and become part of my dream without knowing it. I sense you are sitting with me and take you along with me, wherever I am going.

January 5, 2016

It feels so good to have found peace in my life. No more denying the fact I have Alzheimer’s or pretending everything is ok. Everything is not ok and my future is still going to be like I’m told, but I know I will be taken care of and never be alone.

Finding your inner peace is nowhere close to giving up. You are in charge and no one is going to take that from you. Helping people find their inner peace is one of the most rewarding aspect of being a dementia advocate.

The first step in finding your inner peace is finding ways to let go of the things that trouble you the most. Maybe you need to swallow your pride or maybe sever a situation that is preventing you from finding peace. When you let go, someone will catch you and put you back on your feet. Sometimes the someone is you.

January 4, 2016

Is it easier to visit a stranger in a care facility than a relative? Are you more comfortable holding a stranger’s hand and listening to their stores rather than someone you have known for years.

Care partners need to face their fears just like us living this disease do. When we visit a loved one it is personal and we are unable to put a distance between us. Looking at a loved one is so different then looking at a stranger. Their disease because more personal and their fears becomes ours.

After you visit someone and are leaving, there is no reason to be sad for what you saw or heard but glad because for the time of your visit, you gave that person a purpose. They were not alone and someone does care.

January 4, 2016

I looked out my window and watched a couple snowflakes falling reminding that a change was coming. It didn’t last long, maybe 5 minutes or so, but it was reminding me that the colder part of winter was coming.

So many times in my life living with dementia, I receive these type of messages and choice to ignore them. The change occurs and takes me completely by surprise. I saw the change occurring but maybe I was too afraid to tell anyone so I just ignored it.

Don’t ignore the simple changes with your dementia, tell someone and learn how to adapt to them. You may find out that the changes that your dementia is making is leading you to your inner peace. Don’t ignore them.

January 3, 2016

I’m always asked if I ever get scared living with Alzheimer’s and I answer, yes I do every minute of every day. Then I add a big BUT, I have learned how to control my fears by facing them. Most things in my life I can’t change and since I can’t change them there is no need to be afraid of them, I find ways to live with them.

When I’m afraid, I ask myself, what are you afraid of most of the time it is the unknown. Time has proven to me that there is nothing I can do to change the unknown until it happens.

January 3, 2016

Bob DeMarco wrote in the Alzheimer’s Reading Room that 64 Percent of People Living with Dementia Feel Isolated, Suffer From Lack of Socialization.

New research indicates that 42% of people mistakenly think that once a person with dementia stops recognizing loved ones, they don't benefit a lot from spending time with them.

When you read the statistics you only start to realize how cruel this disease is. The emotions of dementia are so often overlooked because we only see the physical conditions of dementia. If you look good, you must be ok.

So many fronts on dementia awareness are being fought that we sometimes overlook the more important ones. We fight the battles through what we see and not how we feel. Dementia awareness is more than talk, it is action.

January 2, 2016

I copied a post that Cate Lau-Booth wrote and she wrote about the things we very seldom talk about and that is the late stages and what it does to us. I try to encourage people to live beyond their diagnosis but I am only taking to the people that are not in their late stages.

The real heartaches arrive during the late stages and there is no adapting to them. There is no enjoying your life because you no longer have control over it. I don’t like to talk about the late stages because they scare me. I am not afraid of dying but I’m afraid for the people that need to watch me do it.

The audience is very small that wants to hear about the concerns of late stage dementia that we don’t talk about it. It is not because we don’t know what we are facing but we are trying to save you from seeing it. Maybe as advocates of dementia we are doing a disservice by not educating and preparing you for the late stages of dementia. Is silence really golden?

Cate Lau-Booth

I wouldn't wish Dementia/Alzheimers on my WORST ENEMY. As the patient's brain slowly dies, you know they've changed physically, and the caregivers are often in shock!!

Patients are usually bedridden, unable to move, and unable to eat or drink. There will be people who will scroll on by this message because Dementia/Alzheimers has not touched them.

They may not know what it's like to have fought that fight or had a loved one who leads a battle against Dementia/Alzheimers.

January 2, 2016

Every day I get asked the same question, “Harry, how do you do it, you seem so normal and yet you have been living with the diagnosis of dementia, probably Alzheimer’s for the last 12 years.

My answer is always the same, blame it on the doctors and all the medical tests I took including several MRI’s and blood tests every three months. They are the ones that ruled out any other medical condition and were swayed with the cognitive tests that I took and failed.

Heaven knows I don’t want to be living with dementia but someone saw something in me that told them that I am more than capable to become a voice for those that are unable.

I love being one of many voices raising dementia awareness not for the fame and glory because when you are living with dementia, there is none. I do it because I was given a purpose in life and trusted in delivering the message of life after your diagnosis.

LMy faith is strong in believing that we with dementia are walking towards a better life and are able to live an enjoyable life while living with our disease. Back to the question, I know my dementia is not a mild case because there are many days I wish it was over but I hear this little voice telling me that it is not my time, I still have work to do.

January 2, 2016

Compromise is so hard to do when you live in the world of dementia. Today I was able to do that with Hazel when we formed an agreement concerning our Christmas tree. I agreed she could take in down with the understanding that we could put it back up next Christmas season early.

Her argument was that she begins the tax season on Monday and would have very little time to take it down after that. I negotiated that I could leave my lights up in my office for as long as a want. Seems like a win-win for both.

Hazel is an expert in picking her battles and usually uses her feminine charm on me to get what she wants. With me having Alzheimer’s it gets trickier at times but she always seems to find a way.

January 1, 2016

I am celebrating my diagnosis of Alzheimer’s for 12 years. Why in the world would somebody in their right mind celebrate having such a horrible disease and to me, the answer is easy. I’m still alive.

I’ve told you many times how lost I was the first couple years and how I started to come to grips with the knowledge that I had an incurable disease and my future look terribly bleak.

I stumbled with depression and all the horrible thoughts that go along with living in the bowls of depression but slowly I learn that you could live with your diagnosis and find peace with yourself.

I plan to double my effort in showing people how they can do what I did and then talk them into helping others learn the same thing. I believe the quality of life is more important than length of survival. I’m not interested in sitting around and waiting on someone to discover a magical pill that I can’t afford and missing out on the life I have left.

United Against Dementia may not be for everyone but if you are like me and want to live your life to the fullest, give some thought to losing your fears and find out what living in the golden years mean to me.

January 1, 2016

Here it is, the start of a brand new year. The chapter in our life history called 2015 is over and a new chapter is beginning called 2016. We can’t forget the lessons we learn in 2015 if we want to have a chance of surviving 2016.

Although we like to think that this is a new year beginning, it is really a continuing of the last. We will still be living with dementia and not much was accomplished toward a better life. We were taught so much about our disease this past year that in the new year, we need to take this knowledge and do something about it.

I hate to keep talking about the window of opportunity but for many of us, that window is closing. Our voices aren’t as strong as they once were and everyone seems to be using their voice to promote their own agenda and not working together toward a common goal.

Maybe in the chapter 2016 we will see a change and realize we are fighting the same issues and drop our egos and finally work together. That would be nice.

December 31, 2015

Every day, literally, I get hundreds of emails with most of them being some sort of junk mail but sometimes one or two may be important. I usually skim though my inbox and do a general delete because I know I’m not interest in buying what they are selling.

Take for granted the three cancelation notices I got telling me that my domain mythoughtsondementia.com would be cancelled unless I paid the yearly renewal fee of $16. Now this is important to me but my general I don’t care attitude just made me delete those emails without a glance.

First thing this morning I got on my website to update it to find a message came up that mythoughtsondementia.com was available for sale. I thought, hey that’s my domain, what in the world are they doing trying to sell my domain.

I told Hazel what these goofballs were trying to do to me and she told me to relax and she will call them. She called them up and they apologized and told her about the three notices they sent me which I ignored. All was repaired and my site will be up and running within the hour.

Now that my heart is back in my chest and beating regularly, there is a lesson to be learn. Never let important emails come only to a person living with dementia unless you enjoy doing damage control.

December 30, 2015

Memories are events in your life that you remember. Some are good that you always want to treasure and other you would rather forget. Memories are probably the most important assets you hold and never want to lose.

Then the day comes when you are diagnosed with dementia and you know those memories will eventually fade away. There is no way to back up these memories or is there? By reliving these memories, you are keeping them alive and safe.

You can relive these memories by talking and listening to a person with dementia. When you listen to your loved one with dementia tell you about those long lost years, you are allowing them to relive those memories and keeping them alive. Don’t let those valuable memories fade away.

December 30, 2015

A year or so ago, Hazel and I along with Patty and Keith were walking the streets of Historic Williamsburg when a drenching rain started and we pondered on taking the bus back to the visitor center when Patty said, I’ll walk with you Dad. It didn’t take long for all four of us to decide we were going to walk in the rain.

When we reached the visitor center we were soaked but laughing with memories to last a life time. It’s funny how memories are made without trying. I will never forget that day and I hope neither will they.

December 29, 2015

In people with dementia, when our care partner use phrases such as "You can't," "I want you to," "You need to," "I told you," "That's not what I said," and so on, they can make a tough situation worse.

Care partners can diffuse reactions of anger and the outcome may be more desirable if they would validate their feelings, joining their agenda, and lastly redirecting. Think of it as a 3 step process.

Redirecting is probably the most important thing to learn when you are caring for someone with dementia, anything else may be viewed as being confrontational.

December 28, 2015

When the brain becomes damaged by Alzheimer’s disease or a related illness, it begins to have difficulty making sense of the environment. We see things that aren’t there, we hear things that you don’t and we smell things that no one else smells.

You may call them hallucinations but to someone living with dementia, it is so real to them. We are medicated to stop these hallucinations but are they curing them or do they just dull our senses enough so we don’t have them.

Would it make a difference if the things we see, hear and smell are real but you are not capable of feeling them? So many times a person living with dementia accomplishes something and it can’t be explained why or how but we accept the results.

So much needs to be learn about this disease and the person living with it. We assume that we do the things we do because of the damage being done by our disease but so many studies are being done that we can’t be sure. I wonder if one part of my brain is damaged is it possible that another part assumes the duties of the damaged part and does a better job. It’s a nice dream.

December 27, 2015

The hoopla of the holiday season is almost over and the dreary days of winter are facing us. I can no longer channel my thoughts to something else and they always return to the topic of dementia. Although I am thankful for what I have left, I can’t forget the things that were taken from me this year.

Like a yard stick I can measure the progress that Alzheimer’s has made on me this year. I don’t need to have anyone tell me what I lost, I can sense it. It progresses at a rate that you can barely tell until I compare myself to last year and the differences are noticeable.

I’m not surprised at these changes and I think I adapted to them over the year. More changes will be occurring and we shouldn’t be surprised when they happen. I’m prepared to weather the storms and see what the new year is destined to bring. I just hope the people around me are also prepared.

December 26, 2015

A friend of mine told me that I have found a way to live inside my disease of Alzheimer’s and she understands me better than most. I have found a way to live and enjoy my life while living in this strange hard world of dementia.

I am perfectly aware that there is no escape from this world until the end but I refuse to let these fears consume me. I have friends living with dementia that jump out of airplanes, slide down a zip line or do a bungee jump all for the thrill of doing it.

They all have the knowledge of facing their fears of living with dementia, they can do anything they want. Living this disease, we just simplify what we want to do and then we just do it. The results in what we do, never enters into our minds and causing many a care partner to wonder what we were thinking.

December 26, 2015

I am not a sufferer of Alzheimer’s but rather a person living inside the disease. I suffer from my disease but the lessons I learn makes me one of those telling you what it is like living with Alzheimer’s. Insiders are able to explain in detail what it is like to wake up with their disease and fall asleep knowing it is there with them.

I repeat telling my story each year, in more detail, because of the more lessons I have learn. My story is my life and may be different than yours but we will have similarities that you may also be able to learn from.

There is no way of knowing how long I will be a storyteller of dementia but I will always try my best to explain what I am going through. One thing for sure is, I will always share my Hope I found living with Alzheimer’s.

December 26, 2015

Resolutions are for those that think they have some type of control over their lives. For me my life is chaotic and completely out of my control so I never make resolutions but simple wishes.

I don’t know if my wish will come true nor do you if you will be able to follow your resolution. So many resolutions I made to only break once they left my mouth. My main wish is that next year at this time, I will still be wearing a smile. If this one wish comes true, all the suffering my disease lays on me will be worth it.

December 24, 2015

When I look into a mirror I always think, “all I want for Christmas is you” knowing that the next time I look into that mirror another piece of me will be gone. Everyday a piece of me fades away and although you may not see it, I do when I look into that mirror.

Alzheimer’s is described as a slow gradual decline but I see it as a long torturous life. I believe we know the changes long before you take notice. At times when I describe the changes I am told they never took notice.

I still like the person I see knowing he is doing his best living with Alzheimer’s. I see the strength in my eyes knowing I am fighting a winless battle and not letting me miss out on the things in life I enjoy.

December 24, 2015

I may be entering into a new stage of my disease where I am having difficulty forming the shapes of letters. I may be writing something and ask how to spell a word. I may ask several times how to spell the word not because I don’t hear how you are spelling the word but I am starting to have difficulty processing how the letter looks.

I may write the letter backwards or substitute the wrong letter completely. After I read what I wrote, I assume the mistakes are only typos and don’t think too much about it. The difference come when I am printing something and see the same mistakes. Most times people will think my hearing is declining when in fact my cognitive abilities may be declining.

December 23, 2015

There are prisoners that lived in their prison for so long that they no longer want to return to the outside world. They feel safe and comfortable in the world they now live and have no idea how to react in another.

The same is true if you are living with some form of dementia. We get used to how we live and it becomes the only place where we feel normal. We ignore so much of the outside world because we are unable to process what is going on.

We become paranoid and only trust the things that are in our world. We have lost so much in our lives that we begin to think everyone is trying to take more from us. It is very hard to gain the trust of someone living with dementia but so easy to lose it.

December 22, 2015

When an advocate for dementia passes, we are sometimes shocked because the reality of the window closing becomes real. We get impatient trying to get our message out because we know we may have limited time and get frustrated when no one is listening to us.

This is why I get so upset with the small steps theory. I want to be able to see the world awaking to the hardship of living with dementia and substantial progress being made.

Present day advocates are getting too specialized in one particular point of view and losing track of the big picture. We are slowly losing the advocates that live in the bowls of dementia and willing to share what they see.

December 21, 2015

Even though I have been living with the diagnosis of Alzheimer’s for the last almost 12 years, I find it so rewarding to give back to my community by ringing the bell for the Salvation Army.

I usually don’t get involved in fund raising because I have no idea where the money goes but I do know with the Salvation Army, every penny we collected goes back into the community. I really feel good knowing I helped so many when they needed the help.

December 21, 2015

My excitement for the Christmas Holidays has been building since August. I have no secrets concerning my love for this time of year. What happens after the holidays, will I step off the cliff into a world of depression or will I be able to get back to work on fighting for the rights of everyone living with dementia.

There is no doubt in my mind that I still have a lot of work yet to do. I will always be a dreamer with the ultimate dream of a World Without Dementia. Last year at this time we all wondered if it would happen in 2015 and I have the same thoughts for 2016.

We are making progress and I know Rome wasn’t built in a day. Slowly I see some of the old stigmas fading away but I also see new ones forming. If I had one wish it would be that in 2016 we come together, as one, and improve the life of everyone living with dementia and start believing what we are saying.

December 20, 2015

My sense of humor has carried me so far on this path of dementia. It stayed with me during the darkest of times and pulled me out of so many holes I fell into. I don’t think I ever had a smile on my face as much as I do since I was diagnosed with Alzheimer’s.

I’m not in love with my Alzheimer’s but we don’t fight with each other like we did when I was first diagnosed. At first I viewed Alzheimer’s with fear thinking it was ruining my life. After a period of time passed I found out that I could enjoy my life while living with this disease.

I always thought marriage was a 50-50 proposition and Alzheimer’s is a 60-40 with me slowly losing the game. I will gladly take those odds if Alzheimer’s will teach me how to live a meaningful and enjoyable life with the portion I have left.

December 19, 2015

A friend of mine always told me that you can’t fix stupid and I always laughed at him because it sounded so funny. After living with the diagnosis of dementia, probably Alzheimer’s for almost 12 years, it isn’t so funny because what he was telling me is so true.

Some of the things I hear from people that are talking about dementia make me laugh until I realize they believe what they are saying. Given the opportunity I try to give them a different point of view to ponder, but that only causes a dispute because they may have a title of expert in front of their name and I am only living with the disease.

Some think we have come a long way toward raising dementia awareness until you get into a group discussing dementia. There are many points of differences from one of these experts and someone living this disease.

For someone that knows little about dementia, it is hard for them to decide who to believe. It is perfectly ok to believe whomever makes you comfortable but remember that the person with dementia is telling you what their life is like. We never read the book on how we should feel.

December 19, 2015

I stand the same odds you do in trying to change me into someone I am not. So many times it is tried to have me speak or act differently maybe to improve my image. The very best you can hope for is for me to wear the shirt you want me to.

It’s amazing how sometimes I am tried to be bullied into thinking the way someone else may and they don’t even realize I may not be capable of doing that. They then try to strong arm me without me viewing it as being bullied but rather a challenge.

It becomes a game with me and I lose focus on the issue. I can argue with someone for hours not knowing what we are arguing about but I still love playing the game. You will not win but if you are smart, you will give up because I will wear you down. We never tire with playing this game.

December 17, 2015

What do I have to look forward to in the year 2016? I am blessed with so many milestones that are waiting to be celebrated. The most important to me is my 50th wedding anniversary to my best friend Hazel, who through tears and frustrations walks with me down my path to a better life.

I will never forget the day I was diagnosed with Alzheimer’s and will celebrate the 12th year of knowingly living with this disease. The biggest event in 2016 that is so hard to comprehend is, I will be turning 70 and still able to raise dementia awareness.

People don’t look at me as someone with Alzheimer’s, but just someone getting old. So many milestone are within my grasps and my plans are to celebrate my life and prove to the world that there is life after your diagnosis. Leading by example is the best way for me to get my message out. I plan to live to be very old and so far I’m succeeding.

December 17, 2015

I often speak about the lessons I learn while living with Alzheimer’s. These are the lessons I needed to learn to find my inner peace and learn to live WITH my Alzheimer’s. The person that is caring for me also needs to learn some important lessons.

Lessons to learn from dementia.

1. Even when you can’t “fix” it, you can still care for me. My disease is unfixable so spend your time and energy on helping me live with this disease.
2. Know and expect the changes that will be occurring along the way.
3. Learn you don’t need to be right; you will never win an argument with someone living with dementia.
4. Your attitude is powerful. I will sense your attitude, and react accordingly.
5. I’m still a person, so treat me like one.
6. ‘I’m still living’ – quality of life is possible in dementia
7. ‘We’re LIVING with dementia, not dying from it!’
8. Those who provide care must be valued.
9. Hope makes a difference, if you have no hope, neither will I.
10. Dignity must be maintained throughout the disease.

December 16, 2015

Like it or not we are in single days until Christmas. Last year at this time I was praying to be able to see this Christmas and here it is. Christmas is my milestone and that is one of the many reasons I celebrate the Holiday season with such enthusiasm.

I don’t see the commercialism of the holidays because it holds a special meaning for me. My prayers have been answered and I made it through the year. I’ve had an exceptional year considering I’ve been living with Alzheimer’s.

I am dedicated to giving back the lessons I’ve learn throughout the year and passing on that there is life beyond your diagnosis. I stumble and I fall but I will never give up. I try to lead by example when I describe the hardships I am having and prove you can have a meaningful life living with dementia.

December 15, 2015

Are you learning anything while living with or caring for someone with dementia? Are you so wrap up in this disease that you are missing out in the lessons that are being taught? Besides learning patience and understanding there are lessons to be learn that you will carry long after the person you are caring for passes.

The person with the disease is being taught about themselves. They are learning how strong they are and what their limits are. Just like in high school when you were being educated you have the option of just getting by.

Learning will bring tears and many fits of anger until you completely understand the lesson. When I am asked what makes me so strong and finding my inner peace I just say that I worked hard to learn the lessons given to me.

December 13, 2015

Somedays taking a deep breath or putting one step in front of the other is not enough to relive the anguish of dementia. Maybe you have to put your faith into a higher being and let your faith carry you.

I believe at times we put too much faith into a magical pill that will take away all our problems when we should be putting our faith somewhere else. Sometimes the simplest of things will give us strength to face our worries and a prayer might be that thing.

December 12, 2015

Yesterday I had the opportunity to be interviewed by a reporter from the Lancaster Newspapers that was interested in doing a feature article on the work I do concerning dementia. I got my soap box out and for several hours shared my views on raising dementia awareness.

I was so happy to have a platform to explain some of the fears we share living with dementia on such a wide area. Awareness is not just a one-month event and I will step up on my soap box whenever the opportunity is given to me. I was told that the article will probably be published sometime in January and pray I did justice to the hard work we are all doing to raising awareness and creating a better life for all living with any form of dementia.

December 12, 2015

When you choose to abandon your family, it goes beyond being defiant. You have to be very strong and never give into the guilt that will surely follow. Your decision may haunt you the remaining portion of your life well past the time you could have solved this problem. We will slowly forget who you are but can you say the same thing?

So many families are being torn apart because we were diagnosed with some form of dementia and the lack of knowledge concerning this disease may be the only reason you stay separated. Take a moment and think, is it worth it?

December 11, 2015

One of the things I strive to do is shatter the myths concerning living with dementia. One of them is that you can’t teach an old dog new tricks and I’m proving that is not the case.

For the last several weeks I have been edited pictures and adding wording from my posts from the last year. The hard part is finding a picture that I think will go with the wording.

Not satisfied I next wanted to add animation to the pictures I edited and started to post the results of my labor this past week. I need to keep moving and learn new things and not let my Alzheimer’s take over my life. You might say I am learning ways to run from my disease.

December 10, 2015

Today our plumber friend came because for some unreason to me, Hazel wasn't 100% secure with the plumbing I did. When I answered the door he said, 'Harry why are you trying to do plumbing"? I told him if he gives me a minute I would change my cloths and help. I love my life.

December 10, 2015

When someone with dementia gets upset, it isn’t a matter of just getting over it, the emotions may last for days. It’s like the needle gets stuck on the record and keeps repeating in our head.

The littlest of things can make us react in ways that are out of character for us. We can’t process that the argument or event is over and we need to move on. Slowly whatever upset us will fade away like it never happen.

This is when our care partners must show patience and understand that we are not trying to continue whatever upset us but unable to understand it is over. As hard as it may be, you may need to put on your happy face and help me through it.

December 7, 2015

When I started writing a journal on my life living with Alzheimer’s, I also started a blog on My Thoughts on Dementia. These are my thoughts as I progress along with Alzheimer’s Disease and represents the way I am thinking at the time. They are my private thoughts that do not have to be approved by a censor board and changed to accommodate what is political right or not.

I try to stay uplifting, positive and motivational for people living with dementia but I also try to explain the dark side of my life which may be different than yours. My life is hard and not as cheerful as some, I cannot always wear a smile all the time because Alzheimer’s is not a cheerful disease.

There is no right or wrong with my thoughts but I am told so often that what I say is not the way it is because they never felt the sorrow I felt. I tell them they will, they haven’t lived with their disease long enough.

December 7, 2015

As I fall deeper into the cesspool of dementia, the more light I begin to see at the bottom. I believe I am walking toward a better life. I am learning so many hard lessons in life and becoming the person I am distend to be.

Love, patience and understanding is only a part of the lesson plan that was laid out in front of me. I must learn the pain and the hopelessness of someone living with dementia before I am qualified to help them.

I only see through the eyes of someone with dementia and the world I once lived in is becoming a fading memory. I am blessed for being given this life and strive to be the best that I can. I never ask, why me, I only ask what I have to learn next.

December 6, 2015

In several weeks I will be living with the diagnosis of dementia, probably Alzheimer’s, for 12 years. I get very upset when somebody tries to tell me that I have not suffered in those 12 years. I have days that I just want to die because of my disease. I have some of the most realistic nightmares that awakens me in a cold sweat.

I suffer through the emotional fears of the unknown and what my future will be like. I mourn the grief of the life I am losing and will continue to lose. Through this all, I suffer with the knowledge of knowing this is happening to me.

It is getting fashionable to change the language to minimize the stress and suffering I am dealing with my dementia. People don’t want to hear about the horrors we live and change the word dementia to mild cognitive impairment. I can guarantee you that there is nothing mild about my disease.

We do suffer, many nights I have tears in my eyes knowing that I will wake up the next day and lose another part of my life. Let’s quit wasting our time on trying to make this disease sound prettier and use that time in finding a cure, raising awareness and ways to make our life more tolerable. I promised to never sugar coat my life living this disease and if the words I use makes you uncomfortable, I am doing my job.

December 6, 2015

Who would ever believe that giving out balloons to children at a tree lighting celebration would bring so much enjoyment to someone living with dementia for eleven years. Last night Hazel and I did that and I was able to break free of dementia for a short period of time.

Kids looked at me not like someone with dementia but a man giving out balloons. Their love for the Holidays and the excitement of watching this huge tree light up made me forget my worries and live in the moment.

Next week I will be ringing a bell for the Salvation Army and once again escaping the grip Alzheimer’s has on me. Ask me again why I love the Christmas Holidays and I will gladly tell you.

December 5, 2015

Last night at our Memory Café I was given a baggy that looked like it had several pieces of candy in it but when I looked closer, it contained so much more. On the front was a tag that said Care Givers Thank You Kit and explained what was inside.

Lifesaver
To remind you of the many times you’ve been one

Starburst
For the burst of energy, you need

Paperclip
To help hold it all together

Hershey Kisses
To remind you that someone cares

Rubber band
To remind you that flexibility is key

Peppermint Patty
To help you keep cool

Tootsie Roll
To help you roll with the punches

Matches
To light your fire when you feel burnt out

Penny
So you’ll have enough cents to realize you’re a valuable asset to others

Mint
You are worth a mint to your family and friends

I intend to make up some of these bags and pass them out as my way of saying than you.

December 4, 2015

I’m told that you could be walking around with the symptoms of dementia ten years before you were diagnosed. That means for the last ten years you were either ignoring the changes in you or were not being told when someone notices a change.

No one wants to think they may have dementia or maybe they are so afraid of the unknown that they hide the facts for everyone including themselves. Maybe you think the changes are just normal in aging, but dementia is different. Learn the differences between normal aging and dementia and ask your doctor if you have any questions.

Don’t wait until you are no longer able to make the decisions on your life. Dementia waits for no one, you can’t hide from it.

December 3, 2015

Every 67 seconds someone in the United States developes Alzheimer’s. It’s the only cause of death in the top ten in America that cannot be prevented, cured or slowed. 1 in 3 seniors dies with Alzheimer’s or another form of dementia. What is shocking is that almost 2/3 of Americans with Alzheimer’s disease are women.

Would you believe that only 45% of people with Alzheimer’s disease or their caregivers report being told of their diagnosis while more than 90% of people with the four most common types of CANCER have been told of their diagnosis.

I hate statistics because I am not a statistic but someone with Alzheimer’s disease. It remains that these are the current facts according to the Alzheimer’s Association and the are growing at an alarming rate.

If these FACTS scare you, they should. We may not be able to do anything about preventing, curing or slowing the rate of this disease but we need to be told that we were diagnosed with some form of dementia. Doctors need to drop the stigma of not talking about dementia and allow us to get our lives in order while we still can.

December 3, 2015

Baby It’s Cold Outside, I love that song but it gets me thinking of all those people living with dementia that may be sitting at home or in some care facility that may be cold.

United Against Dementia has a program where we ask people to make a lap blanket and donate it to someone that is homebound or living in a care facility. There are thousands of people that would cherish a blanket to cuddle and keep them warm.

If you have it in your heart to join us in becoming United Against Dementia, consider making a blanket and share your love.

December 3, 2015

Since I got Alzheimer’s I started to look at the pictures being posted. Not just a casual glance but I almost study the picture. I see the colors and the shapes within the picture and some of those pictures I can even feel them.

I believe I have learned how to stop and smell the roses. We all say that but few ever do it. We are so busy getting ready to do the next thing waiting to be done that we miss out on so much.

Slowing down my life gives me the ability to do the things I do well. I am not afraid of missing out on anything because I am content in what I am doing.

December 2, 2015

When I fall into the pits of dementia I count my blessing to get back out. Each blessing I recall gets me closer to the top and sunshine. Maybe it is forcing me to forget my worries and focus what is important to me. Try it, it works for me.

December 2, 2015

Hazel is my care partner because we indeed have a partnership. There are no secrets between us because she would never be able to care for me if I would never let her into my world and teach her what living with dementia is all about.

It saddens me when someone tells me that the person they are caring for is unwilling to talk to them. I wonder how they care for them without knowing what is going on with them.

Caring for someone is more than keeping them safe and comfortable, it is also about caring for their emotional needs. Unless we living this disease opens up to you, you will never know how to help us. Gain their trust so they are willing to share the things that scare them. Don’t analyze it, just listen and learn how they feel.

December 1, 2015

After spending several days in the Hells of Dementia, the reality of Alzheimer’s struck home again. When you have a string of good days, you become complacent about the disease you have.

The little changes don’t have an effect on you until your mind goes into overload and you are no longer able to deal with the fears in your life. When this happens to me, I have no idea what to do. I cannot make the simplest of decisions and my mind is filled with confusion.

The thoughts of, “I can’t take this any longer and just want it to be over” comes to mind. You are willing to slip into the next stage of your disease and just give up. Something tells you that it is only a temporary setback and you need to fight your way back.

These are the unknown battles we fight and no one knows we are fighting them. We smile and pretend everything is ok. This is why I get upset when someone says, you have Alzheimer’s, you forget things. If you only knew the battles we fight.

December 1, 2015

I looked at a picture I posted with a candle burning at both ends which I added the heading, Know your Limits, and got to thinking, is this possible when you are living with dementia? When I made that picture I was sending a message to caregivers not realizing that we living with dementia also need to learn what our limits are.

I try things that I no longer are capable of during and then get frustrated when I can’t complete them. I brought on the world of frustrations because I was unwilling to see that I have new limits in what I can do.

I learned this lesson but have to take refresher courses every now because I try something that afterwards I know I should have never tried. At times it is so hard to take your own advice.

November 29, 2015

There are some mountains we try to climb when we should not be trying to conquer them. In my case it was a plumbing project that drove me to depression and prevented me from climbing that mountain. I wanted to replace the shower fixtures and my dementia controlled brain told me to give it a shot. I replaced ever thing and had a leak in two of the new connectors.

No matter what I tried to do, I was unable to stop the leak. I got so frustrated over the fact I was unable to do this that I found myself in the darkest of pits. My son-in-law pulled me out of my depression and between the two of us we got everything to work without any leaks. I can’t tell you how much I love him for coming into my world and helping me out.

The lesson I had to learn the hard way was, just because I see a mountain, I don’t have to try to climb it. There comes a time when you should know your limits and not be embarrassed when you reach them. I can no longer do plumbing anymore and all future plumbing projects will be left to others to do.

November 29, 2015

It is so hard to shake the feeling of depression when you are living with dementia. You try to do something and only make the matters worse. You lose confidence in yourself and your ability to do the things you once did. It’s ok and it doesn’t matter doesn’t mean a thing to you because you know you are losing the battle.

When someone tries to cheer you up you get angry because they don’t realize the lose you are feeling. It may not be a big deal with them but to you, you know different. They may tell you all the wonderful things you can still do, but I think they are only masking the problem. I lost another piece of my life.

I could take a “happy pill” that will dull the depression and give me the comfort to give into my disease or I could fight my way back. You as my care partner cannot fix my problem and must show patience and understanding as I walk alone on the path. You will be able to join me once I find my way back.

November 28, 2015

In my book, it’s the most wonderful time of the year. Why you ask, it is because the Magic of Christmas is starting. Locally we just completed a one-day fund raiser that raised over $6 million dollars that will benefit local agencies to help those in need. Not for research or studies but for the person that needs a helping hand.

The Magic of Christmas is about giving oneself to a cause they believe in. Whenever I am asked what I want for Christmas I reply, I would truly like to have a small portion of your time. Visit someone with dementia so they do not have to walk alone and give them your time so they can escape the grasps of dementia for the short amount of time you give them.

The gift you give will be returned to you 10 times over and you will receive the knowledge that you may have possible say someone’s life.

November 27, 2015

I know it is going to get cold outside so why complain about it, there is nothing I can do about it. This is also true with my dementia, I know it is going to get harder for me but like it getting colder outside, there is nothing I can do about it.

If I can keep that thought in mind, life will be so much easier for me. We at times tend to play the what ifs games and worry about what may be down the road that we miss out on the joys we could be having now.

Worrying about the future is natural and maybe we can’t help doing it, but planning for the future would certainly help a lot more. Planning ahead will ease the worries of what or may not come in the future and give you the opportunity to enjoy those days.

November 26, 2015

One of the things I am thankful for today is, I rewrote my website explaining what our Forget Me Not Facebook group is all about and how to join us. This was a huge accomplishment for me because I wrote all the code by hand. The old site wasn’t dementia friendly and I wanted this site to be.

This accomplishment didn’t come without some doubts whether I would be able to do it or not. I ran into so many programming problems that at one time in my life, won’t have occurred. It took much longer for me to complete and doesn’t have all the bells and whistles that the websites I once designed did, but for someone living with Alzheimer’s for the last 11 years, I think it looks pretty good.

Once I got it finished I was ready to upload it to the server so I decided to delete the old site to keep it nice and clean. I went to the wrong server and deleted my blog instead and when I realized what I did, I almost broke down in tears.

Although Hazel knows nothing about building a website or programming she understands me and was able to display the patience needed to calm me down so I could figure out what I had to do. We truly have the ability to walk hand in hand down this path of dementia and today proved it.

I still have some cosmetic work to do on it but I think it is ready to promote Forget Me Not worldwide so anyone with any form of dementia can join one or all of our groups and feel the warmth and support we have to offer. I hope you visit it at www.forgetmenot.support

November 25, 2015

The mountain I decided to climb is much bigger than I thought. I’m in the process of rewriting my Forget Me Not website by not using a website editor but by writing the code by hand. I am asked why don’t you use an editor and let it do the work for me, it would be so much easier.

I try to explain, why do people walk and not ride in a wheel chair to get someplace. I don’t want to handicap myself by taking the easy way out. I got my books out and I’m in the process of relearning the things that were once so easy for me to do.

I will get this done because I am determine to do it. I get frustrated when I am struggling with something but take another step up this mountain when I solve the problem I was having.

It hurts to struggle this way but it is my way of saying, I have Alzheimer’s, Alzheimer’s doesn’t have me.

November 25, 2015

Just because I have Alzheimer’s doesn’t mean I can’t live out my fantasies. It is no big surprise that I love Christmas, no not the commercial variety but the Christmas that makes everyone happy.

It no longer bothers me when I’m told to wait until after Thanksgiving because my sense of time is gone. During Christmas I can spread the joys while living behind my disguise. I become this man that everyone loves that we call Santa.

No one feels sorry for Santa or pities him because he has Alzheimer’s. Unconditional love is shown toward Santa during this time of year and they talk to him even if it just a hello Santa. They see him and don’t just walk by him. I wish I could be Santa every day of every year.

November 24, 2015

Since the 2015 Forget Me Not Cookbook is almost completed, I was looking around for another mountain to climb. I want to find the one that will test me to my limits and I thought, why not renovate the forgetmenot.support website.

I don’t want to use some editor that does all the work for you but rather do it the way I was taught, write the code by hand. I don’t know if I have it in me or not to tackle this mountain because so much of my training faded away.

It is going to be dementia friendly and easy for anyone living with dementia to use. I am eager to dig in and get my hands dirty, I don’t know if I will be able to make it to the top of this mountain but I need to prove to myself, I still can.

November 24, 2015

When does life end? Does it end when you take your last breath or when you step off the edge into the endless bottom of darkness. I don’t want to “live” for years in the late stages of Alzheimer’s, lying in some bed staring into blankness.

We need to fight harder or maybe it is smarter in ways to live with this disease. Would you like to live to be 150 years old knowing that you would not be able to care for yourself or do the things you are doing today?

I don’t have the answers but I will fight as long as I can but after that I should be able to die without artificial means to keep me breathing. We should have that right.

Now don’t get excited I’m not promoting suicide, I’m saying we should be allowed to die peacefully. Don’t put me through this because you are too afraid to say goodbye.

November 23, 2015

This week is Thanksgiving and I would like to thank all the people that stuck by me and held my hand while walking with me towards a better life. Our care partners do not do, what they do, for thanks but so often we are unable to express what they mean to us and say, thank you.

I am thankful for having the knowledge and strength to go into the darkness of dementia and offer my support to all that are there. I am also thankful for the people having the courage to pull me out when I become too comfortable with the darkness.

As you progress you become relaxed in the stage you are in and lose some of the fight in you. Dementia Awareness Month is almost over for most but for us living this disease, you will hear our voice until someone else needs to Speak Out for us.

November 23, 2015

Every year when you dig out the Christmas lights, you find some of the lights that don’t come on. You wonder, when and how did that happen. When you are living with dementia, your mind is like that string of lights. Each year you realize some of the memories will never come back.

Unlike that string of lights, we cannot replace what doesn’t shine anymore, those memories are lost forever. When that string of lights all go dark, we throw them away, once we lose all our memories, we also go dark.

November 23, 2015

How can you tell if I have dementia or hurt inside unless I tell you? I can put on a smile and fool most of the best. You talk to me and would never realize the fight I am fighting. You ignore the signs because I look and sound so good to you.

It’s not your fault because I am a really good actor and I’m able to pretend all is way while crying for help inside. You have to talk to me and know and understands the signs. They are all around but sometimes you have to look for them to find them.

The holiday season is extremely hard on us because this is when we realize the things we can no longer do along with fading memories and wish we were better.

November 22, 2015

When I look at my past, why would I want to go back there. I was a workaholic that was driven to be the best in my field. I was driven to learn more than the next and computer knowledge and electronics ran through my veins.

I never thought I would have to fight for what was rightfully mine. Then I was diagnosed with dementia and my world came crashing down on me. I went to the pity parties and the why me’s only- to discover I wanted to know more about this world I was thrown into.

I had a hard time going from a workaholic to the person I am today looking at the world the way it was supposed to be seen. I wonder if I was offered a miracle pill that would cure my dementia and thrust me back into my previous life, if I would even consider taken it?

I know what my future is going to be like and the hardships that I will need to face but this is the life I was meant to live. I love this world I am now living in. When you see what is beyond the hardships, it is hard to give it up.

November 21, 2015

So many memories I wish I had are now gone except for the stupid ones I wouldn’t mind forgetting. Like the memories of me being a smoker. I was never much of a cigarette smoker but boy I loved my pipe.

I quit smoking because it was going to kill me only to find out later that dementia was going to do it instead. Doctors tell me that dementia doesn’t pick and choose what memories to forget but why can’t I forget the stupid things I did in life?

November 21, 2015

What does “Living Beyond Your Diagnosis” mean to you? To me it means, I have Alzheimer’s. but Alzheimer’s doesn’t have me. Even though I was diagnosed with this incurable disease and knowing the fate I face, I will not give in to this disease and hide behind it.

I will find a way to adapt to any change that occurs to me and count my blessing for the things I still have. I will not mourn these changes and continue on with my life.

There will be tears over lost memories because pieces of it will still be there but not the whole picture. I can no longer look back to where I once was and only look forward to where I am going. It takes a lot to Live Beyond My Diagnosis but over the years, I found that I am strong enough to do it.

November 21, 2015

What a beautiful sight when someone realizes that there is life after their diagnosis. That is when you know, they will make it living with their dementia. Half of the battle is convincing our self that we are strong enough to handle anything that we may face.

Once you realize, “I can do this” you have found your inner peace that will carry you on. Many never find their inner peace and spend all their time worrying about what lies ahead.

They don’t see the joys that are there for the taking. Find your inner peace and move on with your life. Don’t get stuck on your diagnosis and miss out on life.

November 20, 2015

Would you be willing to share your most inner secrets with the intent of bringing awareness to them? You will be put under a microscope and analyzed for any faults you may say. Not many are willing to do that but there are a few of us that do it every day of our lives.

Why would we do it, it’s not for pity because that goes against what we are trying to do. It is not for recognition because your light will shine without the awards and glory being offered.

We do it for a reason that most do not understand. We are compiled to do it. We live in the dark and don’t like it here. If we do not teach you the dark side of dementia, we will be forever alone.

November 19, 2015

All I want for Christmas is you has a double meaning when you are living with dementia. When I say that, I mean that I want to remember you and your name at Christmas.

We know things will change and the day will come when I forget you, not the love we shared but the person I see. At times it is so hard to handle the things I know because they will come true and there is nothing I can do to prevent it.

My faith and the knowledge I am doing the right thing will help me get over the bumps in the road and enjoy this holiday season. The day will come when I no longer need to carry this weight and I will be forever in peace.

November 19, 2015

Alzheimer’s has not affected my imagination one bit. When the Chipmunks are singing, I truly want a hula hoop. Heavens knows what I would do with it but at the time, it would be nice if I had one.

If I would lose my imagination, I don’t know what I would do. Don’t get this mixed up with the delusions someone with Lewy Bodies Dementia might have because I don’t see things, I imagine them.

I want to see them and I do. Maybe I imagine I am someplace else when I am upset and need to calm down. Smart people call them visualizations, I only know that I am good at it and they always take me to a safe place away from my Alzheimer’s.

November 18, 2015

How long can you hold your breath? I’ve been holding mine for the last eleven years living with Alzheimer’s. My fears increase every day since I was diagnosed with dementia of the Alzheimer’s type, but I continue on.

I am not afraid of death but what comes before that. I am so afraid of losing what I am clinging so hard to keep. I know what lies ahead but I still keep marching toward it. I have no choice.

What gives me the strength to live with this and I can only explain it one way. I believe that someday there will be a World without Dementia. I only pray I can hold my breath that long.

November 18, 2015

The weather forecaster is predicting a warmer than usual winter with less snow. I wish my doctor could predict less nightmares and milder frustrations from living with dementia.

Chances are that will not happen and I am prepared for that. It is horrible to think you will only go downhill and may never reach the level you were last year at this time.

Knowing this, what am I going to do with what remains of my life, there is no doubt in my mind, I will continue to raise my voice for dementia awareness. I cannot focus on the aches and pains of my advancing dementia because so much work needs to be done before I can rest in peace.

My message is strong and clear, never give up, we need your strength to carry on our message.

November 16, 2015

When you have dementia it is so easy to fall into a lethargic way of life where nothing matters around you. As my disease progresses, this battle is becoming harder to fight. I often wonder if we are even making a difference in raising awareness toward our way of life.

I am told that we are and not to give up. Half way through November which is Alzheimer’s Awareness Month, I have to be honest with you, I haven’t heard much about it.

Maybe I don’t run in the right circles to hear about what people are doing to raise awareness or maybe it is not as big of a disease that I think it is. After living this disease for eleven years and pounding the streets for most of that time, you would think I would start to hear the thunder.

November 15, 2015

There is more to life than the long goodbye. I can’t just sit here and wait for it to happen. I need to do things and make a difference. You can add so much to your life besides time.

I don’t want to live a long life and not know what is going on around me, I would rather live a shorter life that is more meaningful to me and the only way that is going to happen is if you stay active and not give in to your disease.

Don’t wait until you are in your late stages to take my advice, it may be too late. Everyone’s vision of a meaningful life is different, find out what yours is before it you are unable to.

November 14, 2015

I talk to so many people living with dementia that were abandoned by family members and every single one of them gives me the same reason why they feel abandon and alone.

Most of them want to take the easy way out by ignoring the problem. They want to save themselves from the hardship we are going through and believe they are getting away with it.

There is no easy way out for us living this disease, we can’t walk away from it. I talked to someone one time about why I felt abandoned and was told I caused the problem.

To them I say enjoy your life but remember I will always be on your conscience and however much you try to forget me, you won’t be able to. You will be spending your thoughts on the guilt you feel and finally understanding the grief you will never get over.

I wrote this for everyone living with dementia that was abandoned by family and friends. Our death will be final for us but not for you.

November 13, 2015

Be kind to yourself, words that every caregiver seems to not understand. They shoulder the blame for things they have no control over but seem to think it is always their fault when something goes sour.

Perhaps a course on caregiving should be taught in public schools so we know what is expected of us and what we have no control over. You would not pass the course until you realize that you have to take care of yourself before you are able to care for someone else.

I believe most caregivers learn as they go along and are not the same person when their responsibilities are over. We look for ways to improve the life of someone living with dementia but we also need to find ways to help the person caring for us.

November 12, 2015

What are you doing to help yourself to have a better life while living with dementia? If the answer is nothing, then read no further because you will not be helped with anything I say.

We cannot rely on medications to make us better because it just helps relieve the symptoms of our disease. We need a positive attitude to ward off depression and exercise to give us the strength to fight. No you don’t need to join a gym and start lifting weights but exercising your brain with puzzles or taking a walk will help.

The key is to stay active both socially and mentally. Join a Memory Café or support group and talk with others that have the same problems as you do. Help yourself get a better life while living with dementia.

November 12, 2015

I often wonder what could possibly change in my life then I realize I cannot do something I once did. Once again I am reminded that I have Alzheimer’s and some doctor did not have to tell me. I know what is happening and that is what sucks the most with dementia, I know without being told.

Sometimes we want to be in denial but our disease always forces the truth on us. The day comes when we have to face the truth and decide if our disease is going to control us or not.

I have nothing to lose by facing the truth and opening the door to my next chapter in life and make something of it. I believe it is best to face your fears early in your diagnosis and not have to worry, what is next. When you face your fears, you reap the rewards of strength and the knowledge that you can do this.

November 11, 2015

Have you noticed that when someone starts to talk about Dementia, they recite the statistics about our disease? Why don’t they understand that dementia is more than statistics and get to the meat of the problem?

I like to go to Sea World but I also want to know what goes on behind the scenes. They offer tours of the happenings behind what you see when you buy a ticket to see the show and that is what I want to learn and understand.

The only way you can learn what goes on behind the statistics of dementia is to talk to someone living the disease. This is where the truth is told and the tears are shed. The World of Dementia is unexplored and so much needs to be learn before you can understand what we go through.

Just like the wild west, my world is not for everyone. It is dangerous and you may get trapped along with me. You will experience feelings that you never knew you had and emotions that will never leave you but when you return to your world you will understand what fighting for your life is like. Are you up for it?

November 10, 2015

I am always lost. My worst nightmares center on the face that I am lost and I have them nightly. Not only am I lost but I am always alone. Hazel senses when I am having these nightmares and holds my hand to comfort me, but I cannot find her.

It is not a good idea to wake me because I may get defensive because I do not recognize her. This is my life living with dementia, I fight hard for dementia awareness during the day and at night, I walk alone lost in the world of dementia.

November 9, 2015

What does it take to become a dementia motivator? I’m not talking about someone that takes care of our needs or someone that mentors us, but someone that motivates us out of the dark places we go and convince us we are capable of dealing with the fears we have.

They are the people that make house calls, they step into your world through the muck to find you and guide you back into the light again. They most likely walk in the shadows themselves and know it well.

First hand experiences are the best way to learn the trade and the lifespan may be short but so rewarding. You don’t do it for the fame and glory and recognition is not given unless by the person that was motivated. If you think you have what it takes to walk in the shadows, you will realize the gift you were given.

November 8, 2015

I know my Alzheimer’s is progressing because I am having an increase in not finding the words I want to say. So many things are happening that prevents me from being in denial and my thinking process is one of them.

I’m beginning to need more time to process what you are saying to me and it is not caused by the normal aging process but due to my dementia. I know these things are going to happen and I’m well prepared for them.

I simply smile when I’m told that I am doing so well because I am the only one that knows the changes that are occurring within me. People closest to me may see the changes but don’t want to admit to them. Sometimes it is safer for them to only see the bright side.

My thoughts on dementia are mine alone and will differ from others but although we have similar symptoms, we are all different with different thoughts.

November 8, 2015

Hazel is such a special person in my life, yesterday she helped me put up my Christmas tree. Not just any old Christmas tree but the most beautiful tree I ever saw in my life. This year I turned most of the decorations on the tree and is a symbol of my overcoming and adapting to my Alzheimer’s.

We don’t abide by the traditional time restraints of doing things and we do things whenever it pleases us. I don’t know when I will fall off that cliff and never climb back up so putting things off does not work for us.

She may put a paper bag over her head when she walks by the tree, only because it is not after Thanksgiving, but she is going to let me enjoy the remaining time I have left regardless of traditions.

November 5, 2015

I am not the frail person you see when you look at me. I have the strength within me to live with my disease. I may not have the ability to show you my strength but I am able to fight off anything that my disease is throwing at me.

Your sadness over my condition only distracts me from fighting the battle within me. I gather my strength from the people around me and if you have none to share, you cannot help me.

Take care of yourself before you try to take care of me is hard for any care partner to understand but is necessary if you want to share your strength with me. You need to grieve with others but not in front of me. I need to know that you will be ok in my passing.

November 4, 2015

When I am asked the question, “are you depressed”, I think that is one of the craziest questions to ask me. I have Alzheimer’s, of course I’m depressed. Maybe the question should be, are you leaving your depression affect you?

When we think about what our disease is doing to us, it does affect us in a negative way. We can’t help from thinking about this so we learn ways to focus on the abilities we still have. This is the main reason I avoid negative people because I get wrapped up in their negativity and find myself depressed.

November 4, 2015

How many people really have control over their lives? I would say not many. I think I do because my giveadarn broke and I’m not going to fix it. I should worry about so many things but I don’t. My responsibilities in life are few and not worthy of worry.

My dementia did this to me. It is almost like it took away my feelings of caring what is happening around me. I refuse to be involved in family squabbles and the desire to be better than someone else.

It’s not a bad thing because I found a peace that is separate from the hustle bustle of everyday life. It seems all my responsibilities were handed off to the people caring for me. I miss the things I once did and regret knowing the fact I was once able to do them but the day will come when that will pass also.

November 4, 2015

How to Reduce the Stigma of Alzheimer’s? So many stigmas are attached to any form of dementia from the day you were diagnosed until the day you die. It’s going to take time, time we don’t have, but here is a start.

Understand the Facts

There is a common misconception that upon receiving a dementia diagnosis, one loses all decision making abilities as well as independence. Most people do not understand the full range of dementia symptoms, conditions, and stages all of which vary widely.

Did you know that about 30 to 40% of senior patients who go to the emergency room are cognitively impaired, but do not have a diagnosis of dementia?

Think of the Person Behind the Disease

Richard Taylor says that he and other dementia sufferers want to be understood. They want others to know, “I am still a whole person. I am not fading away. I am not half-empty or a soulless individual. I’m changing, but I still have the same needs as everyone else. What’s ebbing is not myself, but merely the capacity to meet those needs by myself.”

Don’t Hide: Go Public

“Americans whisper the word ‘Alzheimer’s’ because their government whispers the word ‘Alzheimer’s,’ and although a whisper is better than silence that the Alzheimer’s community has been facing for decades, it’s still not enough. It needs to be yelled and screamed to the point that it finally gets the attention and the funding that it deserves and needs.”

November 3, 2015

I feel great but I just can’t think for myself anymore. Living with dementia you are trapped within yourself with no possible way to escape. You scream for help but the words never leave your mouth, they are trapped inside your head and no one hears your cries.

You hear people tell you how well you look but no one talks about your emotions. They are afraid to look into our eyes because they will see the hopelessness we see.

Caring for someone with dementia is the hardest job you could ever do because the risk of falling with us is so great. It may be an honor to you to care for us but it is the hardest thing you will ever do. You see the slow decline in us and guiltily wish it was over for us. You think you can’t handle the pain and suffering but you do.

When the time comes when it is over, you should feel relief not because it is over but you made it the easiest possible way for us to deal with it. We will take that memory with us wherever we go..

November 3, 2015

What is awareness, it is more than knowing what you read about dementia. You may know about the disease but not be aware how it affects us. You may not know about the pain we feel because we are unable to tell you and we suffer through it.

You cannot see the things we see although they are so vivid to us and frightens us to the point we try to hide from ourselves. You must become aware of the emotions of hopelessness we get even though you are holding our hands.

We are falling into a void where we can no longer tell you we need your help. November is awareness month and its time you become aware not only about dementia but what dementia is doing to us.

November 2, 2015

Which do you think is harder to do, fight for your life after you were diagnosed with some form of dementia, or fight for dementia awareness. These are the battles we are fighting. It is hard to believe that I would think these two battles are equally hard.

I see myself losing both of these battles because every day I am losing a part of myself. You may not be able to tell what I lost because they are my memories. My physical needs may be under control of medication but in my mind, my history is being removed.

I have been fighting for dementia awareness for almost 12 years now and I’m getting war weary. Everyone tells me that we have to take small steps but they are not under the deadline that I am. I still hear the same myths and see first-hand the stigmas we still live with since I was diagnosed.

I would love to “Make A Wish” and that would be a World Without Dementia. Maybe the day will come when I will be looking down, smiling and thinking, I was a part of that.

November 1, 2015

Life does not have to be perfect, to be wonderful. Ask anyone living with dementia and living their life to the fullest. You may get jealous and ask, why can’t I be like that and the only reason you are not is because you are holding yourself back.

Happy people do not live in their past mistakes, they learn and never make them again. Life is a learning process and you can’t get stuck in one of its lessons. One door closes and another opens and you need to be willing to go through that door.

We like to call them, adapting to the changes but in reality we are only moving on with our life.

November 1, 2015

Holly Jolly is starting to overcome me. Halloween is over, we set the clocks back and it’s becoming the most wonderful time of the year. Here it is November and the crazy weatherman is predicting a week in the 70’s. I’m not complaining but I know winter will hit soon.

Even though I have had Alzheimer’s for over 11 years, I get excited with the changing of the seasons sitting by the fireplace with a hot cup of tea. No I didn’t stop drinking coffee, I’m dreaming here.

It’s not a medical condition but my heart skips a beat when I dream of my future. There is so many good times yet to live and I am determine to not let Alzheimer’s take them away.

October 31, 2015

Can you imagine what it is like to be alone, living with dementia. Who do you seek for a hug when you get scared of what is happening to you. So many are lost in this world and no one cares for them. When I see someone like this, a piece of me shatters into a thousand pieces and I am not able to cry for them because I am all cried out.

I stop what I am doing and give them some of my time. That is what they need the most, someone to come into their world and sit with them for a while. You think that you cannot make a difference but for that one person, you are changing their world, you are letting them know that someone does care.

Few ever to get to feel the emptiness we feel. But if you ever get to touch that feeling, you will be hooked on raising dementia awareness forever. That is good because you will be changing lives.

October 30, 2015

One thing nice about having Alzheimer’s is, I don’t have to make sense. I’m not expected to spell things correctly because it is expected that I won’t. I am never invited to a debate because no one knows what might come out of my mouth.

When I start talking about something that no one knows what I’m talking about, it’s ok because I have dementia. When I do something dumb, I only have to pull out my “A” card and they understand.

This works on everyone except Hazel. She never lets me play my Alzheimer’s card.

October 30, 2015

I am often asked the question; how long do you think I have. Of course I have no idea but I tell them what difference does it make, you have no control on how long you may live but you can control how you handle your disease and how you adapt to the changes.

Don’t worry how long you have but what you are going to do with the time you have remaining. Change the things you can, like your attitude, and stop worrying about the rest.

The way you are dealing with your diagnosis can add years to your life. You know you will be faced with many changes in the years ahead, so don’t be surprised when they happen. Adapt to them and proceed to enjoy your life.

October 29, 2015

What do we, living with some form of dementia, have to look forward to in the `future? We know because we read the last chapter in the book and this is the stage so many talk about and gives us the notion how much of a burden we will become.

I believe it is so unfair to the people starting out in this to be thrust into that late stage. It was several years after my diagnosis that the real hardship began. In the early days I was asked if I was misdiagnosed or maybe I was faking it for attention. I got the impression they wanted me to be in the late stages and giving up on life.

My early hardships were making people realize that even though I was able to complete a sentence, I was carrying the reality of having a disease with no cure. They could not believe that I wasn’t as bad as someone they knew. People that get an early diagnosis are still fighting the stigmas and myths of dementia. We may not be like your grandmother or grandfather and when they were finally diagnosed.

A new breed of people living with dementia is coming of age. We believe that we have dementia but also realize it does not have us. We see a future and are willing to work toward it. We are making the changes that we need to have a better life and letting others talk about how much they know about our disease. Every other day they will mention that a miracle cure is right around the corner and give us false hope only to tell us later that it doesn’t work but they are getting closer.

Getting close will not cure our disease but making our towns and cities dementia friendly and providing affordable care will greatly improve how we live. Stop talking and start doing. False hope may make you feel better but for us living this disease, we know better. Help us or get out of the way, we intend to see that changes are made.

October 29, 2015

November is National Alzheimer’s Awareness Month although it is not the only form of dementia, it is the one I was diagnosed with. I will be doubling my efforts to plead and beg people to join our effort in bringing awareness not only to Alzheimer’s but to every form of dementia.

We need to be United Against Dementia if we are going to make a difference. I will be wearing purple to show I am proud that I not only live with dementia but made a vow to fight it until my last breath.

Education is the key to awareness, not book learning but everyday living with this disease. We need to Stand Up and Speak Out what living this disease is like and do away with the myths and stigmas associated with dementia. We need to push our governments into making it easier for us living this disease and demand that we need a cure. Let’s make November a month to go down in history.

October 28, 2015

I have to laugh when someone asks me my opinion and they get mad when I do. My thoughts, right or wrong are mine alone. I don’t base them on any medical or scientific studies, just what I am thinking at the time. I graduated from Alzheimer’s High and the School of Hard Knocks with a major in frustrations.

Over the 11 years that I have been living with Alzheimer’s, I was taught the things that you don’t learn in a book. I lived in the gutter of dementia and saw firsthand what dementia does to a person. I take the time to understand dementia because I am living it.

My ambition is to try and pass what I have learn onto others in the hopes they don’t say that the person they are caring for, act nothing like that. I am only telling you what my life is like with the understanding that we all have similarities but we are all different. I will admit that I very seldom dwell on the horrors because I believe that benefits no one.

October 27, 2015

The person with dementia can still experience emotions even though they are unable to express them. Pain is one of those emotions that we may not be able to tell you about. Sinus problems may cause so many different problems that we just can’t explain.

When my sinuses are bad, they may cause a pain in my jaw which hurts when I eat or brush my teeth. So many little pains go undetected because we assume that our dementia is the cause.

Our care partners need to become detectives to find out why we do the things we do. There is always a reason why we do something which may be unrelated to our dementia. My feet may be sore and I don’t want to wear shoes. Look for others reason why we are acting strangely because it may not be caused by our dementia.

October 27, 2015

I’m not interested in anything you are selling but I’ll take anything you are giving away. One of the ways I amuse myself when someone knocks on my door with a smile on their face with the intention of selling me something.

I sometimes tell them that I will listen to them if they listen to me and what it is like living with dementia first. I have to be quick and on my guard because you can sell me anything. I never carry credit cards and carry very little cash because I have no concept of money. It has little interest to me and created several problems in the past.

I carry this bulls eye that indicates that I’m I easy target but I have learn how to be the biggest pain in the neck and the desire to prove I’m just not interested. Living with Alzheimer’s can be fun at times.

October 27, 2015

Why is it so hard for people to show respect for people living with dementia and fighting for dementia awareness? They tag you in spam to sell some junk that they are pedaling in disregard for the battles that you are living.

You can’t ask them to kindly stop tagging you because they have their own agenda and have no respect for you. I am tired of turning the other cheek giving them the benefit of the doubt. Don’t be surprised when you tag me and try to sell your junk on my page and you get to see the ugly nasty side of me that Alzheimer’s is controlling.

October 26, 2015

Keeping your humor and living with dementia seems to be almost impossible but something that you need to learn. Trust me that laughing is so much more fun than crying and I can tell you that you will have the opportunity to do both.

It seems to me that when I wear a smile, the load I am carrying doesn’t seem to be more then I can carry. A sunny disposition will not cure your dementia but it will keep you out of the shadows of dementia. Staying out of the shadows makes everyone happier, so learn to laugh at yourself and your disease and add years to your life.

October 25, 2015

We all talk about the ‘Long Goodbye’ associated with dementia where we watch our loved ones slowly lose bits and pieces of their life. It could last for many years but there are those that never took the time to say good bye to the person they love.

Saying goodbye does not mean that you have to speak those very words but accepting the fact that your love one is going someplace where you cannot go. They are walking toward a better life and not walking away from you.

We have to know that you will be ok after we are gone, and saying your goodbye helps us go in peace.

October 24, 2015

Today I woke up disorientated and not knowing where I was. I looked around not recognizing anything and Jade, my dog, whimpered and wanted my attention. This brought me back to reality and I was able to focus on where I was.

Most mornings it takes me awhile to get my “thoughts” focused and be ready to face the day. I am not a morning person and don’t want to be rushed to start my day. Hazel knows and understands this and gives me a wide berth in the morning while still tending to my needs. By doing this she avoids any confrontations and once I get focused on the day we can start enjoying it.

October 23, 2015

Have you ever seen two people with dementia arguing back and forth? Both are right and neither will admit they are wrong because their minds are telling them they are right. They will never forget they are arguing although they probably will forget what they were arguing about.

Now what happens if only one of you have dementia? Nothing changes, again you will never win the argument against someone with dementia. It’s beyond your power, we will wear you down and break you. You may enjoy the false hope thinking you won and walk away, but we remember and continue the argument later. We will do this until you give up.

There is a lesson to be learn, never argue with someone with dementia, you will always lose. We have nothing to lose and it gives us something to do.

October 23, 2015

I am slowly forgetting the names of the people I love but it doesn’t matter to any of us. We know the day is coming when I will no longer be able to verbally express my love but the bond we have needs no words to be felt.

So many things, when you are living with dementia, needs to be taken for granted. You cannot assume that my dementia has taken away my love for you when it only prevents me from expressing it. I may not remember the good times but will always know that you made me happy. You may think I have lost so much but there are some things that are impossible to take from us. You may have to throw away the things you assume and take for granted I can still do, in my own ways, the things that matter.

 

October 22, 2015

What is it like not having nightmares or worrying about the future? I don’t know because I have Alzheimer’s and that pretty much controls what I think. One of the things we lose is the freedom that you take for granted. We may be confined to a place we don’t want to be and be restricted to what we can do.

I am a big fan of Home Care and letting me die in the place I call Home. Not everyone with dementia is a safety issue so that leaves the issue of me needing additional care. Programs need to be started so our care partners can responsibly care for us and not be placed in a care facility because of convenience

The options are few if I am a safety issue or I need the care that I can’t get at home so don’t place me somewhere only until the money runs out and I have to go someplace less desirable. So much planning needs to be made before that times comes.

October 20, 2015

It seems like only yesterday but it was years ago I was carefree without a worry and looked forward to the future. I wanted to make a difference and change the world. I never did until I was diagnosed with dementia. My priorities changed and I was forced into survival mode and that is when I got a clear picture what really needed to be changed.

This new world I was thrust into was a world nobody knew anything about. People started to make assumptions what it was like without ever stepping into it. They created myths and stigmas that were not true but in their minds, they were right.

I wanted to stop all these myths and explain that my world is not bad, just different than yours. We have our hardships but so do you. We can live a happy life together if you realize my world is so much different than your and I can never return to yours. Step into my world, it will not hurt you if you are kind and try to understand it.

October 19, 2015

When I wander, I am not lost. I am exploring. I am not trying to get somewhere but rather trying to see what is out there. People wander for many reasons but in my case, it is merely curiosity. We are shopping and I walk off maybe because I became bored and just want to see what is in the next aisle.

For the person caring for me it can be frightening but to me I am doing what comes naturally to me and don’t realize the danger I may be putting myself into. It is fun to explore so do you try to prevent me from doing it or do you find ways to give me my freedom and let me explore while staying safe?

So I guess I’m trying to decide if preventing me from exploring is for my safety or your peace of mind.

October 18, 2015

Don’t cry for me because I am lost, I don’t know I’m lost. I may not know where I am but I don’t remember where I should be so I don’t ever think that I may be lost. I wander looking for leads where I am supposed to go but most times I never find them,

We never give up while living with dementia, we are always trying to find our way back to a normal life. Our normal life is unlike the life you are living. We have no desires because we are too busy fighting our way back.

October 18, 2015

Somewhere over the rainbow is a World without Dementia and I am planning on living there. Someday I will be there but not until I complete what is expected of me in this life. We made progress in raising dementia awareness but so much more needs to be done,

Now that we caught everyone’s attention we now need to find ways to live a better life during our journey. Being dementia friendly is a start but doesn’t help with the financial burden that dementia puts on us. We haven’t begun to understand the sadness that is caused by dementia or begun programs to help people deal with the loss of their loved ones even though they are still alive.

Death is not the only reason why we are separated from our loved ones, the mental disconnect can be sometimes worse. The emptiness we feel can last a lifetime. I don’t stop to read about a miracle cure that is on the horizon, I want to read about a better quality of life for those living with dementia.

October 17, 2015

Being a advocate and living with dementia, I see both side of this horrible disease. I often speak about what it is like living with dementia and the hardships we face. I write a blog at www.mythoughtsondementia.com where I try to explain what my thoughts are at the time so you may have a better understanding what our life is like.

I also get to hear and see what it is like being our care partner. The stories I hear brings me so close to tears I could scream. I hear the stories how someones loved one that has dementia is turning into this nasty hateful person that they don't recognize or understand. I try to comfort them in telling them to remember it is the disease and not the person. Hate the disease but not the person.

The stories that hurt the most is when I hear that someone is placed in a care facility due to safety or needing additional care and their care partner experiences the lose of the person they love. The reality of dementia hits home and even though the person is still alive, you know they lost them. They have no idea what to do with their time and mourn their loved one. I can only sit with them and share their lost.

October 15, 2015

How long can you hide that fact that you have some form of dementia? It is common for someone to say, I don't want anyone to know but I knew without them telling me. This is because I lived with Alzheimer's for so long, it doesn't take me long before I know that you may have a problem.

You can't hide from dementia no matter how hard you try. The symptoms begin to appear and the cat is out of the page. That same cat jumps out if you are in denial and trying to pretend everything is ok. You may be successful for a time but if you truly have some form of dementia, it will surface.

I believe in early diagnoses so you can not only prepare your family but also yourself. A treatment plan can be made and a support foundation can be started. We all lose people we know, I don't call them friends because a real friend will not abandon you because of your disease. Please, talk to your doctor if you are showing any of the signs of dementia.

October 14, 2015

Tonight I met a women at our Lancaster Health Campus Memory Cafe who is differently living her life to the fullest while living with dementia. She told us that she would like to sky dive and we raised our eyebrows as a group. She then told us she already zip lined and bungee corded and her husband confirmed her story.

What a inspiration she was and told the group that you only live once and dementia was not going to stop her from enjoying her life. She has differently come to terms with her dementia and refuses to let it slow her down. We can all learn so much by her determination.

October 14, 2015

Sometimes I feel like I only have photographs and memories left. It seems my life revolves on things long past and it is so hard to think of the present or the future. What is becoming of me that I have to live in mt past?

I believe dementia does that to a person by not allowing us to remember the present but can't prevent us from living the past. I can't remember what I had for dinner last night but I can tell you where I took Hazel out when we were dating 50 years ago.

Maybe my past is more exciting then the present and that is why it is so hard to make and keep these present day memories. I will stay happy with the photographs and memories I made years ago and live the life I remember.

October 13, 2015

The biggest and best gift you could ever give is time away from dementia. I don't need a new shirt or new tie because I have so many hanging in my closet. What would be nice is a half hour of your time to sit with me and listen to what I have to say. You don't have to worry about saying anything or filling in the silence that is bound to happen. Just sit with me and let me know you care.

October 13, 2015

It is ok if I wear my my rose colored glasses and pretend everything is perfectly right with the world. I'm allowed to escape Alzheimer's and even if it is only for a short amount of time, feel good about myself. I don't need to be penned up in my world, I have the right to step outside of my world and dance in the tulips.

I may say some crazy things or do things that seem strange to you but that is because I stepped back into your world and don't know how to react there. In my world I get overcome with my fears and become very quite so I just don't want to be noticed. In your world, Alzheimer's lets me know I don't belong there and prevents me from communicating with the people that live there.

It is difficult trying to live in both worlds but the day will come when I consider my world my permanent home.

October 12, 2015

Sorry for the language but it takes one hell of a person to put on a happy face while living with dementia. You have no idea of the strength you have until you conquer your dementia. I admire the people walking around living a good life knowing the pains they are going through with the various forms of dementia.

Just because you are happy doesn't mean that you don't have the same feelings of loneliness and the frustrations knowing you will never be better only to get worse. This is when you find your strength to tell your disease that it is through controlling your life and that you mean it.

I see so many of these people and think, if they can do it, what can't I. The answer is already in your heart and you just need to follow what it is telling you. I get so frustrated when someone tells me that it is easy for me to say because I don't know what they are going through. After 11 years living with Alzheimer's I know exactly what you feel and may have faced some fears that are awaiting you.

Find that hidden strength and don't let your disease control you. Cry out that it will not control you and will the pain and anger to go away.

October 11, 2015

When you run away from your diagnosis of dementia be prepared to never stop running. You may not be in denial but don't want to realize the changes that are happening. I tried running but was unable to continue because my Alzheimer's caught up with me. I was forced to face my fears or be swallowed up by my disease.

Facing you fears is much harder then living with dementia because of the unknowns. We wish things were the way they used to be but they will never be. Running never worked for me and my money is on that it won't for you either.

Once you face your fears you will find out that they aren't anywhere as bad as you thought. You will find the strength to over come you fears and find your inner peace. You will find it necessary to lean on someone during the way, but always remember you are walking toward a better life.

October 11, 2015

Someone once came up to me after she was diagnosed with dementia and told me she was scared. I asked her what she was scared of and she told me she didn't know. Being scared of the unknown is frightening and can play a major role in how you deal with your diagnosis.

We recommend you learn about your disease to help you understand it better but that comes with a warning. Don't read the last chapter. So many read about the late stages and worry needlessly about it. Read about how to live with your disease and not what your life may be like many years down the road.

Learn about the ways you can adapt to the changes and live in this new world you were thrust into. Don't worry, be happy. With the knowledge you get from how to live with your dementia you will be able to face and conquer the hard times ahead.

October 9, 2015

Why can't families get along with each other. So many families are like this. They are constantly arguing or not speaking to each other. They don't hate each other but let their ego's or belief of being wrong step in the way.

My family is like all others and are destined not to like each other. I pray for the day when we could realize what we are doing and for one day put aside our prejudices before it becomes to late. Swallowing ones pride is just so hard to do.

October 9, 2015

I get so mad at myself when I start to feel sorry for myself and have a pity me party. When I am in this mood, I am always led to a person that has it much worst then I could ever imagine and get slapped in the face with reality. It keeps me humble and I realize that my problems could be so much worse.

My faith has a way of keeping me on track and doing the work I was asked to do. I don't kid myself, I will lose this battle but so will everyone else living with or without a diagnosis of dementia.

October 8, 2015

All my days are not enjoyable but I do my best to make them entertaining. After 11 years. I'm not suppose to be this way but I can't help it. These are my golden years with a little rust that I need to polish at times. More of my friends are getting additional care and maybe I am to but don't realize it. I\now know that all my shoes are slip on and not needing to be tied. Little things like that are needed when you are living with dementia.

I'm now talking like my grandfather used to and I always thought he was so old. Come to think about it, he was cranky at times but always had a smile, just like me.

October 8, 2015

Another flashback of days long ago happen to me when Hazel pulled into the driveway and told me she thinks she has a flat tire. My first thought was call AAA and see if someone could change it but Hazel always said, why have it if we don't use it.

I know it was up to me and honestly my manhood started to shine and I told her, I can do this. I changed plenty of tires in my life so what could have changed over the years. First things first, put it in park and make sure the emergency brakes is on. Put blocks behind the rear tires and jack it up. So far I was pretty proud in how I was handling this crisis and went for the jack.

Where in the world did they hide the jack and once I found it hidden away why did they make it child proof. It's amazing how they could stuff the jack in such a little compartment and make it look so damn funny. Where do I put this thing to jack up the car and how do I us it. Time to get Hazel involved.

She went over the instructions for changing the tire but before I jack it up, I needed to find the spare tire. Laying on my back I found what appeared to be the spare tire under the car. Having no idea how to get the tire down it was back to reading the instructions. Never in a million years would I have guessed to put a part of the jack into a hole in the bumper and crack the spare tire down. When I did get it down, it looked like the silliest thing I ever saw.

By this time I was ready to call it a day and go back inside and put my feet up but I still had a tire to change. With Hazel's guiding me and keeping a eagle eye on me to make sure I did it safely WE got it changed and took it to the garage for them to fix it. Lesson learn is that it is a good idea to get some type of roadside service and let someone else worry about it.

October 8, 2015

I am so busy with my wood turning and working on our 2015 FMN Cookbook I don't have time to think about my Alzheimer's. Our cookbook is up to 235 pages and still growing. I think keeping busy keeps me from thinking of the buggy boos and things that go bump in the night.

Between the Memory Cafes I attend, webinars I am involved in and the mentor groups I speak at, plus all the advocating I do with anyone that will listen to me, it is no wonder that I have no time to worry about my dementia.

My Thoughts On Dementia is not being upgraded like it should be not because I ran out of thoughts but I find it is more beneficial to sit on my bench and do some reading. I know it will catch up to me because so many people tell me to slow down but if I slow down, I will remember that I have Alzheimer's and start to cry.

October 6, 2015

Living with dementia is not all doom and gloom, it can be quite funny at times, like the time I used a tube of diaper rash thinking it was tooth paste. To me it looked exactly like my tooth paste and was in the same drawer as my tooth paste. Sometimes I say something and it takes all of Hazel's willpower not to burst out laughing.

Things like this become family treasures that are talked about long after we are gone. It is ok to laugh during your care giving duties and build family memories. I found out a long time ago that it is so much better to laugh then it is to cry. Living with dementia, you will be doing both so do what you enjoy best.

October 6, 2015

Why can't someone write a book about the type of dementia that me and millions others are living? I was diagnosed with dementia, probably Alzheimer's, eleven years ago and don't consider myself in the later stages of my disease. I am not bed ridden and consider myself to be very active as a human being. I do not need anyone to think for me just help me make the right decisions at times.

Most writers jump on the late stage bandwagon and give their advice on how to treat someone with dementia as though we are all in their late stages.. So many listen to this advice and automatically assume that everyone of us that have dementia is in their late stages.

I could scream when I hear a expert lay out a plan on how to treat me because I am not in the stage that they know. You smother me with protection and I will let you know what you can do with it. Let me live the type of life you are living for as long as I can, that may be 30 years from my diagnosis.

We promote early diagnosis of dementia so we can adjust our life for what lies ahead. That does not mean we are in need of constant care and someone needing to make decisions for us I believe many speak out on the care of someone with dementia after dealing with it for many years. They only remember what it was like toward the end and that is what they write and speak about.

Lets turn our attention to informing care partners how to help us live a productive life and less on how to care for us until we reach the stage when we can no longer care for ourselves. So many with dementia live alone without someone caring for them and could benefit from information on caring for themselves.

October 3, 2015

I have it bad and there is no cure for me. I am a Christmas junkie. I spent the day in my shop turning Christmas ornaments and please forgive me, I was listening to Kenny G Christmas music. I was on a high that should be outlawed and I have no guilt. I am shameless.

Now before you start yelling, I fully understand the true meaning of Christmas and my faith plays a big role in keeping me alive. It is not to early and I want to feel the joys before it becomes to late. I don't like the commercialism of the Holidays and the rushing around to be ready for that one day but when I look at a Christmas star the warmest of feelings come over me.

I truly enjoy giving away the things I made and didn't have to rush to do them. I talked to my doctor about this addiction and he smile and said, I am so glad for you. I guess it is not a serious medical problem but one I am fortunate to have.

October 2, 2015

Have you ever taken the time to really relax and get in touch with yourself. I'm not talking about taking a break from caring for someone with dementia and going shopping. I'm talking about freeing your mind and letting go of all your worries.

Find a nice comfortable place to sit and close you eyes and visualize you are at the most pleasant place you can think of and do nothing more and let your mind float to wherever it wants. You will find that total relaxation overcomes and you are ready to face the day.

Of course there are those that are too busy for such nonsense but they will never find what we did. I know after living with dementia for eleven years, there is peace to be found.

October 2, 2015

If I was magically cured from my Alzheimer's, what would I do with the remaining portion of my life. I have lived so long in the world of dementia that this is my home. It is a strange place but I learn how to adapt to the many changes and the people in my world do not pretend to be anymore then what they are.

I no longer would have a purpose in life and I wonder if I would lose the gift to help others. What would happen to my passion and the fight I am fighting. Would I no longer have a reason to live and just be counting the days.

Maybe that is why I fight so hard for a better quality of life and ways to live with our disease then a cure. I am past the time of wishing for a cure and just want to fight for the rights of everyone living with dementia. The day will come when a cure is found and people will adapt to a World Without Dementia and we will know that all the hard work paid off and we won.

October 1, 2015

No one likes to talk about the symptom of fear that goes with living with dementia. Fear of the unknown, fear of the future and the fear of not knowing what to do. So many of us live in fear because we simply do not know what to do. Something happens and we have no idea what to do so time stands still and we stand there doing nothing.

I'm asked, what are you doing, and I have no idea. That is what scares me, there are times when my body does things that I have no idea why. It is like the saying, what were you thing. You didn't think it through but you just reacted and that is what someone living with dementia so often times do, they react and never think it through.

September 30, 2015

Tornadoes are rare in Lancaster County but a small one touched down within a mile or two of where I live. When I woke this morning I noticed leaves and branches all over the yard and many tress were uprooted. I slept through the whole deal and only found out when I started to ask why so many leaves and branches were in the yard.

Now the rain and tropical storms are supposed to visit over the weekend and I wonder how prepared Hazel and I are for a natural disaster. I don't handle weather turmoil very well and we have plenty of food and water stockpiled and know what we have to do to stay safe but the emotion turmoil is what does me in and that I can't prepare myself for.

September 29, 2015

There are times when I get so angry at myself when I feel sorry for someone living with this disease. I get angry because I always say, don't feel sorry for me, just give me a chance. Maybe feeling sorry is not the words and sadden me would be better. But then I am letting your disease effect me and I know that is not what you want.

I wish I could just speak from my heart and not have to think about what I am saying. There are times I say something and someone asks, what did you just say and I have no idea. We joke that the filter in my brain is broke and anything could slip out of my mouth at any time.

Maybe that is why we get quite as our dementia progresses because we don't know what to say.

September 28, 2015

Foot prints in the sand is a constant reminder to me that I am never alone. Your belief or non-belief is out of my hands and I will not discuss it because these are my thoughts and yours belong to you. Living with dementia you can't help but think of your mortality and when that final chapter will be written.

Knowing that unconditionally I am never walking alone makes my journey that much easier and keeps me out of the shadows of dementia. I wasn't always this secure but as the years go by, I don't think anymore what lies ahead because I am never alone.

September 27, 2015

Living with dementia is so incredibly hard due to the fact we know what is happening to us. We know the love and support we are getting but we also understand the tears and frustrations we are causing. You may think you are hiding the pain you are going through but your eyes are a dead give away to the truth.

We living this disease are experts in reading your body language and seeing the turmoil we are causing. We know we are not doing this intentionally but that does not stop us from carry the weight of your moods. Instead of blaming our disease, we blame ourselves.

I can only suggest you learn more about the world I am trapped in and see for yourself that I am ok and learning how to live in this world. You just might find out that you are worrying needlessly and I am doing fine with what I have left.

September 27, 2015

 

 

 

 

 

 

 

 

September 26, 2015

Some memories never fade, they are like tattoos that will never go away. After living with Alzheimer's for so many years a lot of my memories are gone except the ones that are most important to me. I still remember the moment Hazel accepted a date from me after turning me down so many times.

These are the moments I treasure and will never forget, Recklessly riding my horse without a care in the world and my 58 Chevy will always live in my heart. I always had stars in my eyes and the attitude that I was able to do anything I wanted to do as long as I put the work into it.

I had a good life and the memories of those times will never fade. I also had some very bad times but they are only a faded memory. Maybe I am fortunate that my Alzheimer's took away the dark side of my life and left all the love I ever felt.

September 25, 2015

They say that dementia is a disease of a thousand goodbyes. This is especially true if you are living this disease and become a spokesperson for dementia awareness. You come in contact with so many wonderful people that are also living with some form of dementia that becomes part of your family.

During your friendship, there becomes a need to say goodbye and you lose another small part of your life. Perhaps you made a small impact on their life and that makes the weight you have to carry a little bit easier.

I've lost to many friends to dementia that makes Standing Up and Speaking Out that more important to me. I'm tired of saying goodbye to the people that are dear to me and hearing we are making small steps toward a cure when we are not any closer then we were ten years ago. If we can't find a cure, lets work together in finding ways to live with this disease.

September 24, 2015

False hope is much worst then no hope at all. In the past eleven years since I was diagnosed with dementia, probably Alzheimer's, so many drugs got headlines as promising or break throughs. Not a single one performed like their headlines promised.

There was once a time when I bought into the hype of a cure or some miracle treatment and had my heart broken and sent me back into the horror of, there is no cure. We living this disease buy into this hype hook, line, and sinker only to be told it does not work but we are getting closer.

I leave that cure and magic silver bullet that will cure me, up to others. I am too busy enjoying my life without the heartbreaks of another possible cure. I get criticized because I delete so many of these posts that state a new drug or treatment is on the threshold of a cure. I believe a cure will be found some day but don't make my world come crashing down with a promise to only tell me later that it doesn't work but we are getting closer. It's hard enough living with this damn disease without all those broken promises.

September 23, 2015

Lying in my bed, I often mourn the person I once was. I was so full of energy I was going to conquer the world now I have little energy to get through the day. My eyes no longer sparkle and it seems my whole body is slowing down. Am I ready to get old?

I prepared my whole life to be old but I never dreamed it would be like this. Dementia entered my world and changed my whole life. Getting old is now my main goal. This dementia has not been all bad though, it taught me so much about life. It taught me if I want to be happy I have to enjoy the time I have left.

I realize the frustrations of my disease is only as bad as I let them be. I also realize my Alzheimer's is harder on the people caring for me then it is to me. They have not learn how to let go and not try to change the things they can't. How I wish I could teach the secrets that I learn and help people realize it is not the end of the world but the beginning of a new one.

September 22, 2015

Alan Jackson recorded a song that said, “I'm in love with you baby, but I don't even know your name. This reminds me of someone living with dementia that may be entering into the latter stages of dementia and forgets their spouses name.

They know they are in love with this person, but they don't remember their name. Does it change how they feel about this person just because the can't remember their name or does the love stay forever in their heart.

A name is only a name and not a feeling. I may not remember your name, but if I love you, you will forever be part of me.

September 21, 2015

My life as I know it will come to a end when I can no longer turn wood. I will have lost all my creativity and that part of the battle would have been lost. People not living this disease have no idea of the things we lose. When you lose the things you taken for granted all your life, the reality of your disease takes hold.

You are not in the late stages but you know the feelings of loss. You are not ready to give up but you know the day is coming when you will. You are getting closer to the final goodbye. Redirecting no longer works because there is no place to redirect me to.

I think this is the hardest part because it is so easy to give up and let fate takes its course. Maybe looking for another mountain to climb is the answer because like so many others living in my world, we are not ready to give up yet. We need help to be led to that mountain, then it is up to us if we want to climb it or not.

September 20, 2015

When I do woodworking I have no idea what I'm going to make. However it turns out is ok with me. I start with a block of wood or a tree branch and start turning. I start removing wood until it begins to look like something and then I think, that might make a good something or other.

Every day of my life is like thank, I wake up in the morning and go through the motions of waking up and stumble along until something begins to make sense to me. On good days I begin to see things clearly and usually have what I think is a good day. If I'm turning a piece of wood and it turns out unrecognizable, it goes in the burn barrel.

If I wake up in a fog, I'm screwed because I'm going to have a bad day. Just like the hunk of wood that goes in the burn barrel, there is nothing I can do about the fog so I might just wait until another day and try again.

September 20, 2015

Yesterday was East Petersburg Day which is a big deal in our local community. We have a 5K race and a parade in the morning and carnival rides the remaining portion of the day with a fireworks display to end the festivities. Hazel and I went up to the park to celebrate and after living in East Petersburg for 45 years, I didn't know anybody.

It was strange because I should have recognized someone I knew. We were walking around hundreds of people and I didn't recognize anyone. I should mention that the park is only two blocks from my home but I live with strangers.

What was interesting was that Hazel knew these people, but I didn't, they were complete strangers to me. Maybe my Alzheimer's is reaching the point where I no longer recognize my friends. It saddens me that I am becoming this person but it is what it is and I will make the most of it.

September 19, 2015

I love the spirit of Christmas and wish we would could have it 365 days of the year. I am not taking anything away from the true meaning of Christmas but love the fellowship we share during the Christmas Holidays. These feelings, unfortunately, aren't around most of the time because we just don't have the time or energy to share them.

There are the hum bugs around Christmas but the love that is displayed during the season outweighs the grumpiness shown by a few. I don't care about the gift giving but although I can't carry a tune, I enjoy singing Christmas songs.

I enjoy seeing the people I would otherwise not see and sharing stories since we last saw each other. The smells of Christmas knocks my socks off and I love hanging around the kitchen at that time. I guess what I'm trying to say is you will probably find me annoying with my ho ho ho attitude and it's not even close to Thanksgiving.

September 16, 2015

What do I have to complain about when I am able to sit on my bench under a beautiful sunny cloudless sky and let my mind drift where ever it wants to. I'm a dreamer even though I was diagnosed with dementia. I dream a lot when I'm sitting on my bench soaking up the energy that is all around me.

I feel the sun peaking through the trees and shining on my face and the soft breeze blowing around me. These sensations tend to recharge me and make me realize that it is possible to live with Alzheimer's and enjoy life. I watch the birds and the squirrels playing, things I never did before my mind was introduced to the world of dementia.

I watch a leaf fall and it reminds me that fall is rapidly coming and more leaves will be changing colors. I see and hear geese flying overhead telling me that winter is coming and it is time to migrate. Am I day dreaming or is nature talking to me and letting me know what is to come? It doesn't matter because despite my dementia, I am enjoying the time I have left.

September 15, 2015

I'm still Harry, can you see me or are you looking at someone with dementia. The way you look at me tells me if you see the person or the disease. I laugh inside when someone is talking to me and not looking at me. It is perfectly acceptable to be normal around me and treat me the same way.

I wish people would just relax and let go of their fears of dementia when they are talking to me. There is one thing that was medically and scientifically proven, dementia is not contagious, Visit your loved one with dementia often and learn the lesson I'm trying to teach.A

September 14, 2015

Every day I live with dementia proves how little I know about this disease. After 11 years you would think I would have a pretty good idea what Alzheimer's is all about but every day is different and every person I meet is different. Just when you think you know what to expect, a new symptom comes along to make you think what is happening to me.

I think everyone is writing their own personal book on whatever form of dementia they have and each book is different. The saying goes, if you know one person with dementia you still only know one person because we are all different.

I know my Alzheimer's is progressing but I don't know how I know that, I just do. My bright light is being replaced with a 60 watt and things are getting dimmer. I could be worse and my guess is I will be. Until then you roll with the punches and hope you can keep fighting.

September 13, 2015

When I asked, “Why me Lord” I was answered because you are strong enough to speak out for those that can't. I never had the need to ask that question again because I knew what I was being asked to do. That was 11 years ago and I knew I had to be trained in living with dementia and being diagnose with dementia of the Alzheimer's type would be my teacher.

I spent time in the pits of my disease and learned how to climb out. I cried with frustrations on losing my identity and feeling the pain that goes with my disease. I graduated and was rewarded with the knowledge on how to enjoy the remaining portion of my life and live with my Alzheimer's.

I never got time off for good behavior and to this day, I am constantly reminded that my diagnoses was correct. I also have the need to help others and show them what I have learned. Even with the hardships and frustrations of living with Alzheimer's I am able to enjoy my life and say, “Thank You Lord”.

September 13, 2015

I'm going to sit right down and write myself a letter. In this letter I will write why I want to continue fighting my Alzheimer's and what I need to do to stay out of the shadows of dementia. I will list the things that I refuse to let Alzheimer's steal from me and what is keeping me alive. I will tell about the joys I have in life and remind myself that there is life after my diagnosis.

My letter will be kept where I can read it everyday and remind myself never to give up.

September 12, 2015

What a morning i had today. First time i ever had the chance to see my daughter Patty in a race today and the pride I felt was amazing. It was a 13 mile race which Patty tells me is only a warm up race but Daddy was clapping. Cloudy day but the hot air balloons got off and Patty finished at 1 hour 47 minutes.

 

September 12, 2015

Your patience will be strung to its limit when you are caring for someone with dementia because of the stress it brings. You may lose your patience and later feel guilty because of it. This doesn't make you a bad care partner but one that needs help with their stress.

Caring for someone with dementia requires a considerable amount of understanding and patience. The person may be prone to mood swings, violent behavior, and hallucinations. When you encounter these moments during care, you need to maintain your patience, continuing to speak to them in a calm, soothing voice.

This may help divert their attention from the cause of their agitation and can diffuse the situation. In the event their behavior does not subside, it is better to walk away from the situation until they are calm, as long as the person you are caring for is safe. You should never disagree with what they are saying or attempt to convince them that are wrong and you are right; this will only escalate their agitation.

September 10, 2015

My soul is processed with love and caring. I turn into a different person when I am presenting my ideas on dementia awareness. I look at this person and wonder who is talking with such passion. This is not the person I shared a body with for 69 years. I am in awe with what is coming out of my mouth and how I am able to share my love of life with others.

When I am speaking, I am no longer in control and let whatever is driving me take over. Alzheimer's has taught me well and what needs to be changed. I can not take credit for the work I do because this unseen force is doing all the work within my body.

Dementia does turn you into a different person and each of us is different. It is up to you to determine what the lessons it is teaching you and what it means. You can sit around during your end stages but until then find some love or passion that makes living worthwhile to you.

September 9, 2015

Tonight at our Memory Cafe at the Lancaster Heath Campus I was given the best gift I could have ever received. After our meeting a gentleman came up to me and wanted to talk to me. He told me for the last year or so he was so angry at his dementia diagnosis and took his anger out on everyone around him.

He came to several of our Memory Cafes and heard Mary Howard and myself speak at one of our LGH Health Campus Mentor sessions and told me that his life was changed. He looked at me and listened to what I was saying and decided that if I could do it, so can he.

He faced his fears and got rid of his anger and started to enjoy life again.. No he is not cured but he is learning to live with his disease and enjoy the time he has left. I was given the most wonderful gift when I saw the smile on his face, Life is good.

September 9, 2015

Motivation is one of the hardest things to do when you are living with dementia. Some days are harder then others to get motivated and other days you resent when someone tries to motivate you. We aren't lazy but rather content in the pity me mode.

Some call it depression and I tend to agree with them. I guess it is ok to feel sorry about how you life is going but there comes a time when you have to snap out of it and get on with your life. You have so much to live for so stop feeling sorry for yourself and do something.

Maybe getting angry at me for what I say will motivate you into doing something. That's ok with me. We fight so hard to live with our disease and giving up should not be in our thoughts. Fighting the doom and gloom of dementia is really hard but you can do it. If you need motivated, hang around me, we got work to do.

September 8, 2015

It's surprising how time slips away. You wanted to call someone living with dementia but just couldn't find the time. Then the day comes and you finally find the time in your busy schedule to call them to find out that they no longer know you.

It's a shock, how could this happen so fast. Dementia waits on no one, it can be a long goodbye or a short leaving. The lesson to learn is that time does slip away and has no attention on waiting for you. You must find the time because when you are living with dementia you have no control on how much time have.

September 8, 2015

Some days I walk around with the weight of the world on my shoulders and other days I don't. I found out the reason for this is my attitude and how I handle the problems. There are the days that I don't know what to do and others days the frustrations are a mere bump in the road. Same problems but different attitude.

Nothing bothers me when I am wearing a smile on my face but the littlest thing will upset the apple cart when the doom and gloom sets in. I have better control over my dementia when I can keep my emotions under control. I avoid stressful situations and only deal with the things I can handle.

I rely on Hazel to handle any family squabbles and stay out of their daily dramas. Keeping a calm attitude and letting go of your problems will make living with dementia that much easier.

September 7, 2015

I often wondered what my life would be like if I was never diagnosed with dementia. First I would have never had the opportunity to meet my friends on Facebook and experience the love and support I get from them. I would never feel the warmth I get from raising dementia awareness and helping others live with their dementia.

I found inner peace and faced some of my most horrifying fears. I would have still aged and forgot things through this aging process and I would still have those aches and pains associated with getting older. Being diagnosed with Alzheimer's gave me a meaningful purpose in life and made me enjoy the things I am still able to do.

I understand things I never knew existed and walked in the dark side of life making me enjoy the light that much more. Of course I wish I was never diagnosed with dementia but the experiences I now have has helped me live with my dementia. It gave me knowledge to know, I have Alzheimer's, Alzheimer's doesn't have me.

September 6, 2015

Am I getting just like my friends who are living with dementia? The tell tail signs are becoming more noticeable and I know what is happening. I'm ok with that because I realize “It Is What It Is”. This is not the time to give in to my dementia but make a greater effort into living with it.

The window is closing and there is so much more I want to accomplish before it closes. My drive is not as spectacular as it once was but I know I can and I will. This is the time of year when I always consider whether to hang up my shingle or polish it for another year. I never seriously consider giving up because I still have a long way to go and many more to help. It is amazing the impact we are making when we speak out about our disease. Along with our diagnoses came the obligation to help others get through what we did.

Time will tell if we made a difference or not.

September 4, 2015

I was diagnosed with dementia, probably Alzheimer's, in 2004 and joined Facebook in 2009 to raise dementia awareness. What in the world was I doing those years in between? I was angry at the world and not much fun to be around. I thought I was given a death sentence and played that card for 5 long years.

I lived in the biggest pity party until I was forced to face my disease. I didn't want to die but I was allowing myself to do just that. No medication or miracle was going to help me but a path was laid out to me to get back my self respect. I found my inner strength and realized I was stronger then I thought. Not strong enough to beat Alzheimer's but strong enough to live with it.

I walk through Hell those years and fought my way back to this new life I am living today with Alzheimer's. I paid my dues and learn my lessons well with the understanding that I owed it to others to help them find that path I am walking on.

2009 I started out on that path and continue to walk it today. I am in a constant process of learning about dementia and passing on my lesson to others. I know the day will come when I am unable to walk out of the darkness but I am prepared. In my heart I know I am walking toward a better life.

September 3, 2015

Facebook does a wonderful job of storing my memories since I joined in 2009. Every so often it sends me a post I wrote from several years ago and when I read them I wonder how much progress we actually made since I started to raise awareness on Facebook.

I'm not complaining because the years have been kind to me. I started out in 2009 Standing Up and Speaking Out about dementia awareness and received so much anger from the people that didn't want to hear what I had to say.

Most of these people came to realize that the best source of information comes from the people living this disease. After all these years I'm still dreaming of a World Without Dementia, maybe not a cure, but the end to all the stigmas that go with dementia.

September 3, 2015

One year ago today I posted this.

Whenever I walk through a storm, I know the sun will eventually shine. This is the case with me. The past couple days I walked within the shadows of life and wondered if things would ever get better. True to my theory, the sun is shining.

I need these walks in the dark to prevent me from getting to big for my britches and keeping my feet planted on what is important to me. When I fall into one of my dark holes, I am reminded of the purpose in my life.

I am reminded to smile at my accomplishments but I'm also reminded that there is still so much work to be done. Today I get to talk to newly diagnosed Dementia patients and relay the Hope we all have. No matter how terrible or dark the storm is, the sun will also shine. You have to believe that.

September 2, 2015

Completed another treasure box and two snow globes. At this rate I won't need to be turning anything on Christmas Eve.

September 2, 2015

Are you taking care of yourself emotionally? Most people don't because they don't have the time or maybe they are just alone. Whether you are a caring for someone or living with dementia, trying to do this alone will only bring more heartaches and tears. You can join a support group or seek counseling but your emotional needs must be taken care of. Talking to someone who share the same problems as you do helps with the stress that goes with dementia.

I believe one of the first questions a doctor should ask is, are you taking care of your emotional needs? It is easy to tell and the question really doesn't need to be asked but it opens the door to offer tips on living with dementia easier.

September 1, 2015

Lost in my thoughts while sitting in my chair I start to wonder what this new season is going to bring. I love the summer but the colors of autumn is my favorite. I think back to the changes that I went through this year and try to gauge where I am on this path of Alzheimer's. Not that it matters but it would be nice if I knew if I was heading toward a head on collision.

I guess it doesn't matter where I'm at as long as I keep walking and not stopping. My life has slowed to a point where I am able to see the beauty around me and not worry about the turmoil. Watching the antics of birds was never in my life before I was diagnosed with dementia.

I enjoy the simple things around me and no longer need to be entertained by technology. A lot can be said about getting back to nature and it is hard to understand until you are given that diagnosis we dread. Don't feel sorry for me because I found inner piece and the kind of peaceful happiness you can not understand.

August 31, 2015

Several people asked me to post a picture of the finished plate I was turning. Here is the plate/bowl and a box and two votive candle holders I made in the last several days. The plate was made out of box elder and the other three were turned out of a piece of lignum vitae I had.

 

August 31, 2015

It doesn't take much to make a happy camper out of me. Give me a hunk of wood and put me in front of my lathe and for the next hour I'm living in my heaven. Eleven years ago my doctor gave me my diagnosis of dementia, probably of the Alzheimer's type. Like everyone else, I assumed it to be a death sentence and assumed the worse.

I knew this disease was going to rob me of my identity but what I didn't realize is how long it might take. Call me lucky or understand how hard I work to keep what is mind. I stay active and have a purpose to continue on living. I don't let my disease tell me what is going to happen because I find ways to live with the changes.

I have my pity parties and I just want to get it over with days but I also have the days when I am standing in front of my lathe and loving the life I have. I don't give a hoot about my dementia, I don't even care about the things I forgot or can't do anymore. I do know I am doing my best to live within my dementia. You can too.

August 30, 2015

Cleaning up around the yard is a bittersweet task because I love the summer time but it is nice to think about autumn and the changing of the seasons. It is a busy time but I know if I put it off, I will be sorry next spring.

So many changes are coming up with the changing of the time and darkness will be coming earlier. These changes I take in stride but what about the changes that are occurring in my life living with dementia. I try to “go with the flow” and adapt to them even though it is hard at times.

The difference between the changing of the seasons and the changes in me are the changes in me are permanent. I can not go back to the old me once a change occurs. Like my yard work, I can't put off the changes in my life because my Alzheimer's THINKS it is in control. When a change happens, I adapt and find a way to live with it. It is my way of saying, I have Alzheimer's, Alzheimer's doesn't have me.

August 29, 2015

You become a very strong person when you are living with dementia. You may appear to be frail and disoriented but beneath the service is someone fighting the battle of their life. Every second of our life we live with our disease and know relief will only come when we complete what we have to do in this life.

I am not afraid of death but I am afraid of not completing the things I was asked to do. We do not look strong because we do not need that type of strength, Our spirits are strong because we faced all the horrors that dementia threw at us. That strength will be carrying us on.

When I pass, the morning you will do will be for yourself and not me because I gained the strength to carry on. I love you and you me and I will be waiting for you. Take your time and complete what you need to do and gain the strength to be with me.

August 27, 2015

I have a question for the membership that I know many have knowledge on. If you have a loved one that is showing the early signs of dementia but the testing they were given shows no signs of dementia what can you do? I know that many other medical conditions need to be ruled out before a dementia diagnosis can be made.

I hear this same question over and over again and causes so many frustrations. I would like to hear what others think.

August 26, 2015

Today is National Dog Day and Jade, my rottweiler, has pulled me out of the darkness every day since I had her. She can read my moods better then anyone can and redirects me to her whenever she sees the sadness in my eyes. She came to me when my life was at its lowest after my closest friend Lance died unexpectedly.

When Lance died, a piece of me did also and I vowed no more dogs. After a period of time Hazel told me she wanted me to see this rottweiler pup and I told her how dangerous I heard they were and I wasn't interested in having my heart broken again.

She persisted and when I first saw her, she was meant for me and I for her. I believe she knew I needed her to walk with me down this path of dementia and she never leaves my side and senses when I need emotional help. Jade is my companion dog and I am blessed to have her.

August 23, 2015

When I lose something is it because I misplaced it or do I not recognize it? I'm sitting at my computer and decide I would like to have another cup of coffee and don't see my cup so naturally I think it is sitting beside my chair upstairs and go up there and don't see it anywhere.

I must have left it out in the garage when I was out there doing some wood turning, of course it isn't out there either. Getting frustrated because I can't find my coffee cup, I just get another cup and chalk it up to another lost thing. I go back downstairs and sit down at my computer and reach over to put my cup on the coffee holder and there sits my empty cup.

I should have easily seen it but I believe I never recognized it as the object I was looking for. When I lose something I usually ask St. Anthony for help in finding it and I usually do find it. This is becoming more common with me in losing something that turns up right before my eyes and I now think my brain is confusing objects and telling me that I lost them.

August 22, 2015

When does a care partner say goodbye to the person they once knew and try to make friends with the person they are becoming? Saying goodbye means so many things to different people and doesn't necessarily means a final farewell.

Being in denial and not realizing or not willing to admit someone is slipping away is a injustice to all parties involved. The person that is slipping away knows they are but feels that no one cares. They try their hardest to be the person you want them to be but they can't because their dementia won't let them

You get angry at them because you feel they are being indifferent but the fact is, they are drifting away from you and leaving you behind, You may think you are walking with them but the distance that is between you is increasing.

Say goodbye to the person you once knew and catch up and become a friend with this new person. They need you because there is no turning back for them. I can tell you that walking alone with no one that realizes your fate and trying to hang on to the person they once loved, and being in denial, will be left behind.

August 20, 2015

It may not seem like it but I see signs of summer winding down, My days are rushing by me and schools are beginning to start a new year. Maybe it's the hot days of summer but I am looking forward to the cool days of fall.

Some tell me I am wishing my life away but I see it differently. Each new season energizes me and makes me realize I passed another milestone. I am busy cleaning up the yard in preparation for the harsh winter they predict.

I never plan to far ahead because Alzheimer's is always playing with my mind telling me I will lose this battle. Planning for the new season is all I can do now but I'm happy with that. I will take whatever I am given and enjoy every minute of it.

August 19, 2015

Why am I so sunny all the time? I'm asked this all the time and the truth of the matter is, I'm not. I have my bad days just like everyone else but I refuse to let them effect me. I could easily let the reality of my disease overcome me but that is not me.

The worst thing, I believe, with Alzheimer's is, I realize my life is slipping away. I can't do anything about it so why fight it. I would rather find ways to cope with the changes that are occurring and get on with my life. It may sound noble but it isn't, I am only trying to survive.

Once I enter into the late stages it may be to late to adapt, I will enter into the routine of waiting for death. I know I will lose this battle but until then, I will scratch and fight and be laughing the whole way.

August 18, 2015

Today I spent several hours turning things for the burn barrel. Just one of those days when nothing turn out the way it was supposed to. I had fun anyway although I have nothing for my efforts. I didn't really have fun but I'm trying to stay positive. It brought back memories of those ugly ash trays we made out of clay in school and our parents would say, tell me about this. We didn't know it then but they were saying, man this is ugly.

My burn barrel consists of misfit heirloom treasures that are destined to be recycled into something else. Sometimes I can make something out of them and other times, they just become wood chips laying on the floor because I am a wood turner not a miracle worker.

August 18, 2015

I wish when I was younger I would have learn how to be a ventriloquist. Not just any old ventriloquist, but a really good one. Can you image how much fun I would have living with dementia. I could demonstrate what it is like hearing voices and no one would think it was possibly me doing it.

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My doctor appointments would be so much more interesting that's for sure.

August 16, 2015

Can you feel the love tonight? If you can, you have found your inner peace and are able to face anything that comes your way. Feeling it and letting others know makes living with dementia more tolerable. You may be living alone but you are never alone because of all the love that is around you.

Reach out for help and accept the support you will get in return. Join a support group of you choice and become a active member through giving and receiving of help. There is no reason why you need to walk alone when new found friends are waiting to help you.

August 16, 2015

Today is a zippity-do-dah day. Everything is right with the world and it is a clear day. These days don't come as often as they once did but I will enjoy everyone that does. Kenny G is playing his magic and lifting my spirits for whatever is lurking ahead.

Today is when I stop and smell the roses and give thanks for the blessing in my life. We spend so much of our energy fighting our disease without realizing how lucky we really are. We focus on the hardships we are under and forget to look outside our world and admire the beauty that surrounds us.

Today is a good day to let go of your problems and enjoy yourself. Not possible you say, just watch me.

August 15, 2015

Just let me alone, you don't know what I'm going through. We hear that all the time and we do know because we are going through the same thing. Sometimes it is easier to get angry at our disease instead of trying to figure out what is going on.

I can get angry at any moment and at times I have no idea why. Over time I have found ways to avoid the triggers that make me angry and I have found that I am not mad but rather my anxiety level goes up and I'm responding to a situation. This I can control by avoiding those situations and practicing to keep my anxiety to a level that I can handle.

I may try breathing exercises or just leave the room when I feel I am losing control. There are ways to control your dementia and not let it control you. There is no way you are going to eliminate all the stress in your life but there are ways to handle it.

August 14, 2015

Alzheimer's is a marathon and not a sprint. Some call it the long goodby and others like me call it a bump in the road. With or without a diagnosis of dementia, I was planning on making the most out of my life. I studied long and hard to become successful in the Information Technology field (IT) and I rose to the top of my field in computer science.

There was nothing I couldn't accomplish but since Alzheimer's entered my life 11 years ago, that part of my life is less then a memory to me. I struggle using my computer today but so do many others. I would be lying if I said I didn't miss that part of my life but Alzheimer's forced me to revalue what I am suppose to be doing and being at the top of the IT field was not it.

I was stripped of the look what I can do to the look what others with dementia needs. One door closed and another one opened and that was the door that led me to raising dementia awareness and advocating for a better quality of life for all that are living with dementia.

Alzheimer's provided the education I needed to explain what it is like living with this disease and the desire to Stand Up and Speak Out for those that can't. I completed my apprenticeship of early onset and graduated into the mid stages of Alzheimer's. I love my new life and the opportunity to help create a World Without Dementia. Now I need you to follow me and then complete whatever needs to be done to accomplish this.

August 14, 2015

The Do's and Don'ts of caring for someone with dementia is longer then my arm. I already posted some of the don'ts now I will share some of the Do's. Feel free to add additions Do's and Don'ts that you have learned along the way.

1.Do treat the person as a adult. Although the person with dementia is confused, he or she is an adult and deserves to be treated like one.
2.Do be sensitive to the environment. Is it calm? Quiet? Is the temperature comfortable? Is the lighting too bright? An uncomfortable environment may be the cause of catastrophic reactions.
3.Do help the person to remain as independent as possible. It may be quicker to do things for them, but it is better for the person to do things for themselves.
4.Do simplify instructions. Give one direction at a time to avoid confusion.
5.Do establish a familiar routine. Activities within the routine should be varied as appropriate.
6.Do speak to the person as if they understand. Give the person the benefit of the doubt. They may surprise you.
7.Do respond to the person's feelings, not just the words expressed.
8.Do be flexible. Creativity helps when working with a person with dementia.
9.Do learn as much about the person's past as you can. This will help you immensely in planning programs ans when calming a person who is upset.
10.Do provide encouragement. Imagine not knowing who or where you are. You'd need encouragement too.
11.DO BE PATIENT. Give the person extra time to respond to questions or requests. Don not bombard the person with multiple questions or requests. Rushing the person usually winds up frustrating both of you.

August 14, 2015

Welcome to the world of dementia. I can think of a million places I would rather be but for now I am stuck here. I would like to tell you of some of the Do & Don'ts of my world that may make your life easier. There are so many don'ts that you will learn along this journey but here are a couple to share with you. I will post the Do in another post.

1.Don't speak to someone living with dementia as if they were a child. This can cause angry reactions and it indicates a lack of respect.
2.Don't scold the person. He or she is not intentionally making a mistake. Instead, quietly and gently point out the behavior and suggest alternatives.
3.Don't speak to the person in negatives. You'll get a better response if you say “Come with” than you will with, “You can't go there. Avoid negative phrases like, “Don't do that” or “You're doing it the wrong way”.
4.Don't ever startle someone with dementia. Approach the person from the front and be sure they see you before you speak to them. If startled, we may see that as a threat and react to it.
5.Don't ever assume that every person with dementia is the same. Dementia affects and progresses differently in different people.
6.Don't be afraid to touch the person or give a hug. Express some affection. The person with dementia likely does not get enough of it. Make sure the person is comfortable with you touching or hugging them
7.Don't talk “around” a person with dementia, as if they were not there. He or she may understand more then you think.
8.Most importantly DON'T GIVE UP !!!!

August 12, 2015

Yesterday we were talking about how to encourage more people with dementia to speak out about their experiences living with dementia. Those of us now speaking out, have a small window to do this until our disease silences us

We need fresh voices to tell about the good, the bad and the ugly of their day. I'm not promoting doom and gloom just the reality of the world you live in. Caregivers often give their opinion from their views and perspective they see but that often differs from what we feel and see.

We living this disease are not looking for the silver bullet that will cure this disease but rather ways to improve our quality of life through understanding of this disease. No one understands dementia better then the people living it and we need your voice before dementia silences you.

August 11, 2015

I may slip and I may fall but by golly, I will get up and continue walking down that path of dementia. I will continue to have my bad days and the days living with Alzheimer's that are tolerable but one things I want to make clear, I will never give up. I plan on making the remaining days of my life as pleasant as can be and refusing to let my dementia control me. This takes work on my part because sometimes you need to look for happiness and not wait for it to come to you.

I believe you need to step outside the stigmas of dementia and do the things that you are not suppose to be able to do. Show the world that although you have dementia, dementia does not have you. Believe me when I say it is is so much fun to do the things you did when you were a kid. Don't let your age or illness hold you back.

August 10, 2015

I hear so often that someone needs to leave our group because they can not bear to read the stories being posted. I understand and wish we could sugar coat what dementia does to us but we can't. We need a place to vent about this disease and maybe pass on some knowledge that we gained.

It is hard to hear about the hardships but also harder to live with them. The stories I am told often brings me to my knees and in tears but I have a quest to keep going and relay this information so others can learn. Advocating for dementia is not a pretty job and can be quite painful at times.

The trick is to distance yourself when the road gets to rough to handle. Unfortunately if you are living this disease, that may not be possible. I suggest you take a break but don't abandon us because we need everyone to help raise dementia awareness and our window of opportunity is limited.

August 9, 2015

Good morning world, I'm still trying to get the Fifes and Drums of Colonial Williamsburg out of my head. I had such a wonderful time in Williamsburg that I am having trouble getting back into my world of dementia. Why would I ever want to return to the world of dementia and the only reason that I come up with is, that is where I live.

I can't run away from Alzheimer's or pretend I don't have it because it finds ways to let me know it is still in my future.. I can only enjoy the good times realizing they are not permanent and I am still on the path of Alzheimer's.

That doesn't mean I can't take those occasional trips to fun and enjoyment but just because I feel find, doesn't mean I am cured. I believe you need to find that balance between enjoying your life and not being in denial. The wave I am riding will crash and I will tumble but until then, my life is a hoot.

August 6, 2015

When I read some of the posts, it brings me to tears because I know the day will come when the people caring for me will be facing the same problems that I read about. We say goodbye at each stage until there is no longer a need to say goodbye. I believe we need to do a better job in letting you know we fought a hard battle but it is time.

We are not giving up but rather giving in to the call for a better life. Dementia is cruel because it will not let our care partners escape the horrors they see and give them the freedom that death gives us. I gave up on seeing a cure and I pray for a easier ending for all.

August 6, 2015

It is what it is! It took me many years to learn that I can not change who I am or regain the things I lost. I now have a sign on my desk to remind me when I am walking in the shadows and I'm trying to make sense out of my life. Everywhere you look in my “office” is reminders to me of the people I love and what makes me happy.

I have pictures hanging on every wall that represents a memory to me, a digital picture frame that rotates pictures I took in Williamsburg in such a way so I can visualize walking the streets in the Historic District. Of course Santa Claus is sitting in the window along with monkey memorabilia that friends gave me.

On my wall is a Forget Me Not sign that I made and everyone signed that was at our camp-out/cookout we had several years ago. I also have memories of the days I was a member of Memory People hanging on my wall,.and a cabinet where several of the woodturning projects I made over the years. My office is more then a office but a place you can see some of my fondest memories.

August 5, 2015

The transition from the life I was living in Williamsburg to my life back home is really hard for me. In Williamsburg I can be me, that crazy person who does silly things just for the heck of it. No one knows me so I am not judged so I do not have to hide the fact I have Alzheimer’s.

I like that carefree person I am down there but there are times I don’t really like the person I become when I come back home. I feel like the person I’m not. I pretend to be the old normal and not the person I became.

Down there no one tries to cover up the embarrassing things I do or say but just goes with the flow. It would be great if I could just be someone living with Alzheimer’s and it didn’t bother anyone.

August 3, 2015

I am tired but it is a happy tired. We will be heading home tomorrow but my spirits are regenerated and I’m ready to get back to my job of raising dementia awareness. I got my outlook on life back on track and just have a general attitude of feeling good.

Sometimes you only need to go home and I consider Williamsburg to be my home away from home. Several days I was away from Alzheimer’s and how it smothers me at times but even though the days were hot, they were cloudless and so many wonderful memories were made.

We did a lot of sweating and our legs ache but the laughs we had more then covered any aches and pains we experienced. God willing, we will do it again next year.

July 28, 2015

Being a advocate of dementia and living with the disease is a short term career. The window of opportunity is constantly closing not giving you enough time to complete what you started. That is the reason why we can never give up because even though it is considered a long goodbye, the time we have to advocate is very small.

Advocating is a struggle to make believers out of nonbelievers and mentally it gets just to tiring to do after a time. You begin to wonder if the effort is worth it and slowly your voice becomes silent.

When you started to advocate, you knew that you could make changes but slowly you realize you are telling the same stories to another group that doesn't believe you and once again you start the cycle of awareness. Alzheimer's robs you of the hope of a better quality of life and your only feelings are that you made it through another day,

No I'm not having a bad day, just telling what it like living with dementia.

July 28, 2015

We have this weird impression that it is important to keep someone living with dementia busy at all times. At times we have to force someone to do something because it is healthy for them. A busy mind is a healthy body unless you have dementia. Just like you, we have to regenerate our body and sometimes sitting in a chair looking out the window will help more then any busy activities you give me.

Don't get me wrong, we must exercise our body and our minds but not like we were twenty years old. We have dementia but we are also getting older, out of shape and just plain tired. Our life is much slower then yours and there are days I just want to sit and remember the things I still can.

July 27, 2015

Yesterday we were young and so full of life. We grew older and were supposed to get wiser but we left the weight of the world fall on our shoulders and we became serious. Somewhere along the way we forgot how to have fun. Then the day comes when we are introduced to dementia.

What little life we had left was taken by our dementia because we allowed it to happen. Doom and gloom became a major part in our life and we were not supposed to have fun. We left the stress of this damn disease take control of our lives and we never did anything to fight it. Then one day someone starts telling us there is life beyond our diagnosis and we think he lost his mind because we are stuck along the path somewhere and don't believe the things he says. He is so full of life and we want to be just like him but we lost the ability to be happy and life is so hard.

He is persistent and makes us smile every so often and there are times we forget that our life is so bad. Soon we start to believe that we could be happy even though dementia is a strong influence in our lives. We are beginning to find ways to adapt to our disease and things seem not to be as bad as they once were.

Is it possible that someone living with Alzheimer's can teach us how to live again and not be afraid of any form of dementia? He warns us that in order to be happy like him, you have to work for it and want to be happy. The baggage you are carrying must be thrown away and never picked up again.

Once you find the happiness he found living with Alzheimer's, you must promise to share how you did it with others. We will then be United Against Dementia and on the path towards a better life for all.

July 27, 2015

Sometimes we get so wrapped up in how bad our life is that we lose sight on how good we have it. We often need a sign that reminds us to open our hearts to the joys around us. It's often hard to believe that someone may have it harder then us. we only think about what our disease is doing to us and are so miserable because we believe we can not ever be happy.

There are signs all around us that are telling us that is not so, but we are so focus on what is making us unhappy that we never see them. We are told to stop and smell the roses without even thinking what that means. We often reply, that's easy for you to say.

Maybe you don't need a sign but rather a swift kick in the pants. You are only as unhappy as you let yourself be. There is no physical reason why you can't smile only your mental state prevents it. In other words, you may be the reason why you are so darn miserable. Snap out of it and start seeing the light. Adjust your attitude so a little happiness can come in and then watch the flood of joy come.

July 26, 2015

Stay true to yourself and don't get caught in the headlights of fame. Remember who you are and that you have Alzheimer's and leave a mark for others living this disease. I was given this advice some years ago and try my best to follow it. This was a conversation I had one day with Richard Taylor.

He saw something in me that I never did. He taught me to Stand Up and Speak Out about my Alzheimer's. He made me realize that I have a duty to help educate the world in living with Alzheimer's and make others understand what we go through every day of our lives.

Don't look for a reward because there is no reward in helping others living with dementia. When I was lost in my disease, I read a book written by Richard that changed my life. I was no longer bitter at the world and found my passion in life. I had several private conversations with Richard and webcast that planted my feet to the earth. I will never forget the teaching from Richard and promise to never give up and continue on with my passion.

July 26, 2015

So many of My Thoughts On Dementia get thrown into the trash can because I can't find the words to complete them. My biggest problem is when I try to think to much and can't complete a sentence. The words are in my mind but just won't come out. These are the ones that get thrown away because when I read them, they sound phony and not what I feel.

I like it when I sit down and the words just come out. I don't have to think what to say, just what I feel. I think when it comes to dementia, we have a tendacy to overthink every little detail and create a lot of our problems. We always tend to think the worst and put that action into motion.

Big deal, I have Alzheimer's but Alzheimer's does have me. I have a life and a will to live. I still have goals in my life and the willingness to complete them. I still dream and chase those dreams not giving a thought to my dementia.

With or without the diagnosis of dementia, I believe I would be living the same life I am enjoying now. It is not the medication I am taking or the care I am getting but my attitude and the people that love me regardless of the fact I have Alzheimer's.

July 25, 2015

Have you ever thought that the reason someone living with dementia no longer recognizes you is because you have changed so much and you are not the way we remember you. The strain of caring for someone with dementia will take its toll and change you. The happy go lucky person with the mischievous look in their eyes is gone.

We see the stress you are under and never saw that before in the person we loved. The way you turn your head and not look us in the eyes when you are talking to us is the person we don't recognize. The little things you once did are gone along with the memories.

As a care partner you wish you had that person back and someone living with dementia has the same wish. Help me remember you by being the person I always knew.

July 24, 2015

I am locked in the years of long ago. Don't ask me about current events or who is running for president because I have no idea. I get depressed and agitated if I watch the news so I retreat to a more gentler time in my life. Yes we were at war and had racial problems and all the other ugly things we have today but we also had a more relaxed life.

Maybe my mind is playing tricks on me but no one knew we were poor because we helped each other when hard times fell on us. I don't remember the violence that occurs everyday and girls were taught home ec. and boys had shop in school. Don't get me wrong the advancements that were made in human rights and equality are wonderful.

But, how many know how to bake a cake or pie from scratch? Where can I go to get new soles put on my shoes or get my radio fixed? Those are the things I miss.

July 24, 2015

Have you ever taken notice that we living with dementia have a one track mind. The track we are on is whatever we are presently thinking about. It could be the what time is it track even though we don't really care, but we are stuck on that one track and will ask hundreds of time.

Hazel used to tell me that I just asked that but she now knows that my needle sometimes get stuck on the same track and doesn't bother. It gets annoying but we can't help it. When we go away, my favorite thought is, are we soon there.

Redirecting my thoughts to something else sometimes works unless I get stuck on that thought. You aren't allowed to shoot us so it is up to you to keep me from driving you crazy.

July 23, 2015

I have noticed that once a person's loved one with dementia passes, they feel they need to leave any support group that they belong to. Maybe they want to put as much distance between themselves and dementia as possible or maybe they feel they no longer belong, whatever the reason is, they may want to be part of a support group to continue to walk with others and use their own experiences to help others.

Unfortunately the effect of dementia never leaves you, even after your love one passes. You still hate this disease and your passion turns toward others and you may have the urge to help them get through what you did. This is not for everyone because the need to move on with your life calls and the hardship memories of dementia may be fading.

The people caring for someone with dementia needs to know what you learn through your journey and I hope that you will consider staying part of our dementia community and continue to help us. I am so afraid of losing the knowledge you have and others will have to learn it the hard way you did.

July 22, 2015

I often write and reflect on my life living with Alzheimer's. I try to stay accurate to the way I am feeling at the time I write it and find most of my writings are positive. How is it possible to stay positive when you have a incurable disease?

For me it is relatively easy because I found my inner peace and purpose in my life. The love I feel and get from the people in my life protects me from the horrors of Alzheimer's. I have my bad days and my pity parties but I try to make them short and sweet.

Some days I walk alone but the support of the people that love me is always with me. I can see the sun on the darkest of days but there are times I struggle to find it. I try to help others find the happiness I have found and not fall into that bottomless pit of dementia. You can do this, it doesn't matter if you are caring for someone or living it, look for the sun and get out of the shadows.

July 22, 2015

Don't ever underestimate the intelligence of someone living with dementia. You may assume just because they have this disease that they can no longer think for themselves or complete a sentence without your help. You will certainly find out that they possible may know more then you do.

There are times when I am quick with a reply and other times I struggle to collect my thoughts. Most times I know what I want to say but there are times when it is impossible to find the words to say them. I give up and give you the perception that I don't know what to say rather then not knowing how to say them.

Learning the quirks of someone living with dementia opens the door so that you can visit with them in their own little world. We like our world and we know how to operate in this world so don't try to drag us back into yours because we no longer understand that world.

July 20, 2015

Who decides when a person with Alzheimer's disease or other dementia should no longer drive? I thought I would open a can of worms tonight because I have strong beliefs on this subject. If you ask the person with dementia, they will probably say they are a safe driver. These are the ones that get really grumpy if their driver license get revoked.

Then there is a doctor who makes a medical decision and reports his/her findings to the State. If they feel you are no longer able to drive safely, they are required to report it to the State and we all know what happens next.

Then there is the person living with the disease who voluntarily gives up their privilege to drive because they realize although they feel they are a safe drive they also know that they no longer can make quick decisions and react quickly enough to a emergency condition. That's a nice way of saying they know the could be a hazard behind the wheel and hurt someone.

When you have dementia driving it is not a right or privilege but a safety issue and a decision that you living with dementia may not be qualified to make. Don't yell at me, just think about it.

July 20, 2015

Technology, is it life saving or do we depend on technology to cure all our problems when using old fashion common sense would do. I love gadgets but some are getting beyond my capabilities and create more frustrations then any good it was designed to do. My virus protection sofeware is a good example, it tries to protect my computer so much that it slows it down until my computer is worthless, but it is protected.

Most dementia technology is after the fact technology. Tracking devices that track me AFTER I wander off. Technology to keep me a prisoner in my own home to keep me safe. How about we design technology to make me not want to wander or technology that keeps me safe without making me feel like I'm being caged in.

In order to design this type of technology throw away the book and start talking to someone with dementia and listen to what they say before you sit in front of your computor and make the next wonderful gadget. Listen to what they need and not what you want to give them. Learn what will give us a better quality of life and then design it.

July 19, 2015

I could never begin to count the blessing I have in my life. You would think that after living with Alzheimer's for 11 years, my viewpoint in life would change. I am surrounded by unconditional love that will not be effected by my many mood swings and people that still believe in me.

I know there are times when my antics hurt them but they realize that my disease influences me to be the mean person they see at times. They will never leave me because the pressure gets to bad, instead they will find a way to adapt and conquer any change that occurs.

They never question my diagnosis because they know and understand dementia. I've had many friends that came and gone but never left a hole in my heart. I could never live with dementia unless I had the people that love me and walk along side of me through the good times and the times that stresses everyone. Hazel told me there is nothing we can't conquer together and having the friends we have makes it that much easier.

July 19, 2015

So many have a need to know what it is like walking on the dark side of dementia so they can better understand their loved ones. It is hard to give you a accurate answer because everyone is different and no on talks about it. I can tell you what it is like for me with the understanding that your loved one may react different.

For me I am walking with total hopelessness with the urge to give in to my disease. A rage overcomes me and the littlest thing can cause an outburst. There is nothing you can do to help me because I am so deep into the void that I can't and don't want to listen to you. I know I have to fight to get out which means I may lash out at you.

I am loosing the will to fight and just want it to end. I am not thinking about taking my life but rather making the emotional pain go away. This is when there is no denial that I realize what my disease has done to me. The feelings of hopelessness and loneliness overcome me because how could anyone love a person like what I became.

This is only a portion of what it is like to walk in the shadows of dementia and I tell you this not as doom and gloom but so you can understand the good, the bad and the ugly of dementia.

July 18, 2015

I am so tired of the rain but today I was so glad to see a couple drops coming down. I was looking for a reason just to goof off today and those couple drops gave it to me. Now I just have to find the list of things to do on a rainy day. Not the list that Hazel makes up but my own private list.

I just want to grab a hunk of wood and start sanding. Have you ever taken a branch from a Birch tree and sanded it. It gives off a smell that if you closed your eyes you will have the memory of drinking birch beer soda. It is the most heavenly of smells.

The same goes with so many other types of wood and the fragrance they give off. That is the reason I fell in love with woodworking, it brings back so many wonderful memories. You can do so many different things to rekindle memories of long ago, you just need the desire to do them.

July 18, 2015

Is it possible to escape the frustrations of dementia and enjoy life if only for a couple of hours? Poitively, just create a Memory Cafe in your area and stay true to the reason why you formed it. Our Memory Cafe's are a social gathering and not meant to be a support group meeting.

When I visit a Memory Cafe, I want to laugh and forget my problems. I can honestly say we try to answer all questions that come up but I also want to hear somebody say, “I haven't laugh that much in years”. In my book they are meant to enjoy the life you still have.

Some have activities and games to play and other's like ours mainly sit around and talk about present and long ago memories. My day was made yesterday when someone told me that he used to strum the guitar and thinks he will dig it out and give it a try again. My point was taken, you don't have to give up the things you love just because you have dementia.

July 17, 2015

We are the present dementia story tellers of the world. We tell our stories, leaving out the chapters that are to hard to tell or the ones that hurt the most to tell. We do our best in telling you want it is like for us to be living with dementia and each one tells a slightly different story. The one thing we have in common is the chapters we omit, for some reason they are just to hard to explain.

It is unlikely that you would enjoy sitting with me and listening to my story if I told you about the dark side of dementia. That part of the story needs to be told but we are judged because it is so hard for someone that is not living this disease to believe it.

Sometimes we slip and act out the dark side and explain it as having a bad day. The reaction we get makes us quickly close that chapter and try to move on to something else more pleasant. Understanding the dark side of dementia may be best left to after we are gone because it would be hard to look into your eyes and realize you know what we know.

July 16, 2015

I have so many weeds growing in my flower beds that I can't seem to get rid of them. This really irritates me because I try my best to stop them from springing up and every time I look there are more. I have the same problem living with dementia with the little things that irritate me and I have no idea how to stop them.

I have never learn how to say no to anyone and they take advantage of me. I get so mad at myself and my lack of backbone to stand up and just say no, I can't do that. Maybe it's the fact I don't want to hurt their feeling even though they are taking advantage of me. I know that and so do they.

That was several years ago and so much water spilled over the dam that I was forced to learn how to say no, I can't do that. This lesson is easy to learn but like weed killer, it has to be relearned every so often.

July 16, 2015

When I was diagnosed with dementia of the Alzheimer's type 11 years ago, I didn't want anyone to know about my disease. Sounds familiar doesn't it. I needed the support when I was at my lowest part of my disease and decided to spill the beans in hope of understanding. Looking back it wasn't a mistake but so many friends and relatatives hightailed it and I felt abandoned. Still sounds familiar.

I say it wasn't a mistake because I found out at a early point in my journey who I could rely on and built a support system around me with the people that understood dementia and was not afraid of the person I would become.

I'm not surprised that most of my friends are affected by dementia either by living with the disease or knowing someone that does. We are close friends and many I have never met in person but will offer their support when I need it. Our dementia family is the backbone in letting us have a better quality of life. Reach out and accept the help they are offering, you never have to walk alone.

July 15, 2015

When I look at you and don't remember who you are, what have you done to help me remember you. I don't want to forget you but we are being disconnected. Have you ignored me for so long that we both have changed to the extent that we no longer recognize each other?

Is it possible that I do recognize you but I'm unable to tell you and you are unable to see my efforts. Looking closer you will find I recognize the smell, the touch and the look in your eyes that tells me it is you even though I can no longer remember you name.

Maybe that is why we are born without a name but able to pick out our baby among a hundred others. Maybe it is you that no longer recognize my touch, the way I look at you and think I don't know you. I will always remember you but you may not be able to tell it.

July 15, 2015

When you walk in the shadows it feels so good to be back in the sun. Living with dementia it is natural to have your good and your bad days. We get used to sharing our time in both of these two places that it becomes a way of life. My Alzheimer's is a gradual decline but I still experience the ups and downs of the disease.

I try not to walk in the shadows to long because it is a way of life and that is a life I don't want. Staying positive and knowing that the sun will return is a way to avoid a longer time in those shadows. When you walk in the shadows it will drain all the energy you have. You will lose all ambitions and just want to walk alone.

This is when someone gentle takes your hand and shares their energy and helps you regain all that you have lost. Sometimes it takes my faith to energize me and other times a kind word or a loving smile will do it. My passion in life is to extend my hand and offer my support. You can do the same thing by showing a little kindness to someone that needs it.

July 14, 2015

Living fully with dementia, what a great topic to talk about. We hear so much about the downside of living with dementia that it is hard to realize that you can live a full life. Of course your expectations must be within your means and you have to be willing to work for it.

Many are living with difficulties but still able to enjoy their life. I am looking through the eyes of someone with Alzheimer's and my views are based on that. I could give up and no one would blame me for doing so because I have dementia.

I am not ready for that yet and even though my life is blessed, I want more. I want everyone living with dementia to have the opportunity to work toward a full life. I don't want you to wait until you are in you late stages to realize you gave up the chance to live a fuller life.

I want you to fight and scratch so you can live fully with dementia then I want you to tell others how you did it so they have the opportunity to do it also.

July 13, 2015

Are you just letting your life slip away and waiting for it to end? Do you really belong in that late stage where you no longer have a reason to live. I have heard all the reasons why you can't get motivated and do something to get the spark back in your life. Has anyone every told what is going to happen if you don't start helping yourself?

We make excuses why we can't do something never realizing what we are doing to ourselves. Looking out the window and making shapes out of the clouds or building a house out of dominoes is exercising our brains. Looking at pictures and telling the stories behind them or just sitting outdoors is great.

Feeling sorry for yourself because you can't do anything is a cope out. Maybe getting angry at yourself instead of me is the answer. Most people with dementia are not bed ridden or incapable of doing anything and they are the ones giving us living a happy life with our disease a bad name. It's not easy living a happy life with dementia but a lot better then giving up and doing nothing.

July 12, 2015

Why does family only want to be involved in our care when we reach our end stages? They never cared about use through all the many years of struggle but when we reach the end, they are there with their hands out.

So many families are torn apart at the end because the children now want a say in their care. They were to busy before but now they want to be involved. Don't they realize I may no longer know them and see them as strangers.

The people that are caring for me are doing the best job that they could possible do and those are the ones I want to be around at the end. To the people that aboandoned me along the way, stay there because you gave up your rights. I am not being bitter but saying what so many people living with dementia are thinking.

July 12, 2015

Trapped in my body and unable to do anything about it. I know what I want to say but just can't put it into words. How many of us living with dementia have these thoughts? We are losing the ability to express ourselves and at times our frustrations lead to anger. It's on the tip of my tongue but just won't come out. It is frustrating for us because we know the answer but our mind can not retrieve it. You know what I mean or don't you remember just adds to the frustration.

I think we have a tendency to give up rather then fight for the words. I was speaking at a Memory Cafe this past week and all of a sudden I lost my train of thought. I was embarrassed but instead of fighting for the words, I simply moved on to something else.

There is so many things we can learn to do to sidestep those embarrassing situations and redirect ourselves from a angry situation that may have followed.Adapting to you disease and finding your own ways to handle the many problems we face, will not only give you inner peace but make your life more enjoyable.

July 11, 2015

How bad will it get living with dementia. That is a question with no answer because there is always someone that has it worst then you. Another question is how good can it be living with dementia. That depends on you.

Most people are satisfied with leaving their disease take its natural coarse and not rock the boat. Not me, I want to find what my limits are and what I can do to increase them. I know what my future holds for me but until that time comes, my life goes on.

I would be lying if I said I am not concerned about my future but my body will break down when I allow it and start giving up. I push myself and others toward a better quality of life and many are finding it. I sound like a broken record but everyone wants to be in that late stage even if they don't belong there.

Unless you live in that late stage there are still things you can be doing and changing your attitude towards your life is one of them. If you are in denial, wake up, there is no hiding from dementia. Reality has a way of being brutal. Stop handicapping yourself because you think you can not do anything. Learn something new and exciting, stay active both socially and mentally. Find out how good your life can be living with dementia.

July 8, 2015

There is no doubt in my mind that I am doing what I am supposed to be doing. I was on WITF Smart Talk radio show today and it was awesome. A representative from the Alzheimer's Association led off the program and then I gave my thoughts on dementia and then a care partner gave her view on her life since her husband passed. Kim Lemon did a fantastic job in hosting the show.

The show was very emotional and informative Kim Lemon has a talent that left us open up and discuss topics that we sometimes don't talk about. Later I had a Memory Cafe at the Lancaster Heath Campus and met someone that was just diagnosed with dementia and they wanted me to meet him. He was not ready yet to attend the Memory Cafe but I spoke with him and he is willing to come to our next one. I walked back into our Cafe with the warmest of feelings.

I no longer fear living with Alzheimer's, my purpose in life is to help people find the answers to their questions and give them Hope living beyond their diagnosis. If I can do it, so can you.

July 7, 2015

Dementia effects all races and religions. It doesn't favor one over the other. Several years ago I created No me olvides which is our Forget Me Not group for the Spanish community. Although I speak very limited Spanish, I felt a tremendous need to form this group.

Recently I came to realize that I have very few friends living with dementia in the black community. They suffer along with the rest of use but I'm ashamed of myself that I know of no dementia support group that they belong to. I failed the black community because I never reached out to them but that will change.

The doors are wide open in Forget Me Not for anyone to join unless you are trying to sell us something. That is not permitted on Forget Me Not. It is a safe place to talk about your disease and find comfort with others in sharing your experiences. You will never be judged about your beliefs and will always be treated with the proper respect. If a member doesn't follow these simple rules, they will be removed.

July 6, 2015

Finding That Better Quality of Life

When you are living with some form of dementia, how do you find a better quality of life? First of all don't pity yourself because you were handed this diagnosis. Don't waste your time in denial of your diagnosis and most importantly, get on with the rest of your life.

Attitude plays a major role whether you will be capable of enjoying your new life or not. Your life will be changing, so adapt to the changes and keep moving forward. Don't get stuck in the 'I am losing everything' feelings. Keep active and learn new things. If you fail at something today, try to do it again at a later time, never give up.

People living with some form of dementia are the ones that are changing how the world is looking at us. We are the ones finding the ways to a better life. Become active and find the passion that will force you to keep moving. Never lose your sense of humor because it makes you smile and smiling is better then any drug on the market. It's simple, take control of you dementia and never let it control you.

July 6, 2015

We talk a lot about 'Living Beyond Your Diagnosis', and about how to cope with your dementia. Ways to help our care partners in caring for us and how to laugh at ourselfs. Just a few years ago we were unable to do any of these things because we were so focused on that end stage and saying good bye.

Everywhere you look, someone living with dementia is proving there is life after their diagnosis. We are proving that we can learn new things and enjoy the things we always did, maybe with some adjustments and help, but if we are allowed, we can do it.

We are no longer rushed off to a care facility because ways are being found that we are able to live at home for a longer period of time. We are making success, maybe not in a cure, but certainly in finding ways to live a better quality of life.

To benefit from these successes you have to be involved. You have to want that better quality of life and accept that changes will be needed in your life. We are getting 'United Against Dementia' and finding the ways. Help us help you and become involved in dementia awareness.

July 5, 2015

When you talk about awareness, you not only need to talk with knowledge but you have to live it. Getting your knowledge from someone that is living well with their disease is one thing but the true knowledge come from those unable to speak. These are the people that are so trapped inside their disease but are not able to be reached.

This is when you have to work to retrieve the knowledge they hold. You have to be willing to shed their tears and feel their pain. When you walk in my world, care must be taken that you do not get trapped there.

Awareness is more then caring for someone, it is understanding why dementia is so painful to us. It is understanding why we want it to go away and stop the emotions that goes with dementia. Walking the tightrope of sanity, few people want to do, but many like to tell what it is like.

July 4, 2015

Dementia friendly, what does it mean to you? Some think by treating us like children, they are dementia friendly. They are so far from the truth because we are not children. Taking away our dignity is not being dementia friendly.

Ease of use is being dementia friendly without the childlike antics. It is hard being dementia friendly when you have a fine line to walk and not embarrass the person with dementia. Making something so easy that the person loses what little dignity they have is a disservice to us.

Everyone living with dementia is not in their late stages and should not be treated that way. Removing the difficulties is being dementia friendly, not reducing it to a point where we lose our respect. Don't call yourself dementia friendly unless you are.

July 3, 2015

Today I started a wish list of things that I wished would happen. The first is I wish my cursor would go where I'm pointing it. It has a habit of hiding somewhere on my monitor and I have to wiggle my mouse to find it.

Next I wish my computer would type what I'm thinking. If it is so smart, why can't it spell what I'm trying to type. I get finished with something and look up to find so many words with red lines under them. If it is smart enough to know that I misspelled it, why doesn't it just fix it for me.

I wish people would stop asking me when my birthday is, if I didn't know the first time, chances are I wouldn't know when you ask me again. Really, how many people can count back from 100 by 7's when they don't teach that in school.

My wish list could be pretty long because so many things just irritate me. Don't get me started on all the stupid questions the gas pump asks before I can pump gas. If it doesn't trust me, I'll go somewhere else.

July 2, 2015

When you are caring for someone with dementia, remove the words “I was only kidding” from your vocabulary. We have problems processing what you are saying and take everything you say literally. After you light that fuse, I was only kidding will not blow it out.

Communicating with someone with dementia is far different then it used to be. I hear all the time that I can't take a joke anymore but in reality, my brain does not process what you said as a joke. I may only process every other word you say and if I miss the punchline I will react to what I heard and understood.

It's a new way of life when you are caring for someone and the more you learn, the easier it will get.

July 2, 2015

Warning Signs of Stress

Do you know the warning signs of stress when you are caring for someone with dementia? Care partners get so wrap up in caring for us that they forget about themselves. Here are some warning signs of stress that if you recognize yourself, it is time to find ways to relieve the stress.

1.Do you feel like you have to do it all yourself, and that you should be doing more.
2.Are you withdrawing from family, friends and activites that you used to enjoy.
3.Do you worry that the person you care for is safe.
4.Feel anxious about money and healthcarer decisions.
5.Deny the impact of the disease and its effects on your family.
6.Feel grief or sadness that your relationship with the person isn't what it used to be.
7.Get frustrated and angry when the person with dementia continually repeats things and doesn't seem to listen.
8.Are you having health problems that are taking a toll on you mentally and physically.

Don't ignore any of these signs, I know you don't have time to worry about them, but they will catch up to you and drag you down along with us. Be kind to yourself, being a care partner is a thankless job.

July 1, 2015

My Fears Living with Dementia

My biggest fear living with dementia is the people caring for me and them handicapping me by doing everything for me. There will be a time when I will be needing extra assistance but until that day arrives, let me find what works for me. If I am struggling with my thoughts, don't finish my sentences for me because you may not be thinking what I am thinking.

The same goes with answering for me. If someone asks me a question, let me give them the answer. If you speak for me, no one will bother talking to me, they will just ask you. This happens so often when someone realizes I have dementia. It reminds me that they think I went stupid all of a sudden.

Next, look me in the eyes when you are talking to me. Make me feel like you want to talk to me. I can tell by your eyes if you really are comfortable talking to me or afraid to be around me. I sense your emotions and will copy them. If you are angry or frustrated, you will pass these emotions to me.

My fears have little to do with my dementia but losing the quality of life I am used to living. I fear you will pity me and turn me into someone I am not ready to be. I know the only information you read is about the late stages but I don't belong there. Let me live with my Alzheimer's until the day comes when I can no longer do everyday things with dignity. Let me struggle but keep me safe.

July 1, 2015

Just returned from my doctor appointment and I'm flying higher then a kite. My blood work came back and I had a excellent visit. What ever I am doing, I should keep doing it because I found the secret with living with my Alzheimer's. I am slipping in some areas but doing well in general.

I think attitude concerning my dementia and knowing my limits goes a long way to living a long enjoyable life.Although I need to be reminded constantly not to sweat the small stuff, I am still learning when it is time to walk away from a frustration.

Don't compare me with some in their late stages because I'm not there yet. Like millions, I am in my mid stage and capable of doing the things I love. I work hard to keep my mind active and learn new things. Presently I am controling my Alzheimer's and not letting it control me.

July 1, 2015

You may not be aware of all the other groups that fall under the Forget Me Not groups. Our main group is a secret group and almost impossible to find but one of the best you will find. In order to join that group, just leave me or any of the other admins a message or add your name to this post. All the other groups you simple need to follow the link and add your name.

Forget Me Not – Alzheimer's Dementia https://www.facebook.com/groups/780755315365229/

Forget Mer Not – Lewy Body Dementia https://www.facebook.com/groups/1466664356939288/

Forget Me Not – Frontotemperal Dementia (FTD) https://www.facebook.com/groups/532599406876713/

Forget Me Not – Vascular Dementia https://www.facebook.com/groups/1400660376821395/

Our Spanish group No me olvides https://www.facebook.com/groups/431530526921569/

Forget Me Not – Memory Cafe https://www.facebook.com/groups/1398777350367388/

Forget Me Not – Dementia Angles Fly Free https://www.facebook.com/groups/641793599210898/

Forget Me Not – Crafts and Gardening https://www.facebook.com/groups/465423030194317/

Forget Me Not – Fun Group https://www.facebook.com/groups/187847681338933/

Forget Me Not – Holidays https://www.facebook.com/groups/186650374850250/

Forget Me Not – Recipes https://www.facebook.com/groups/269410783188997/

Pathway To Knowledge https://www.facebook.com/groups/572307532828859/

June 30, 2015

People with dementia can be so judgmental at times, not with others but judging their own abilities. So often we give up when taking a break and trying again later will help us succeed. Stopping before a meldown or letting your frustrations get the better of you is the secret.

You care partner must master when it is time to take a break and just do something else. I may insist on keeping going but you have to have the ability to stop me and redirect me into a different direction.

Living with someone with dementia is hard but learning the little secrets on what makes us tick makes life a little better. Everyone is different but by getting to know the person makes it easier.

June 30, 2015

After a good nights rest i conquered my mountain and got the the treadmill finished. I knew in my heart I could do it but my brain was saying different. I feel good about myself and ready to face the day.

 

 

 

 

June 29, 2015

Today Hazel bought a really nice treadmill to walk on when the weather is bad. After we struggled to get it in the house, we opened the box and started to assemble it. Halfway throught the assembly I got so frustrated with trying to following the directions that Hazel called it a day and said we can finish up tomorrow.

I got frustrated because I was unable to follow those simple instructions and losing my concentration. These are the things that my Alzheimer's does to me and my manhood. It makes me feel like a failure but tomorrow we will finish up and I will be so proud of completing it.

The emotions of Alzheimer's is worst then forgeting where I put my glasses. A cure would be nice but a better quality of life in my book, would be more useful to me.

June 29, 2015

The Glen Campbell special shown what it is like advancing with Alzheimer's. I see myself in most of the things that Glen went through. If you only listen to Glen Campbell playing his music you would say that there is no way he could have Alzheimer's but when you got to see his everyday life, it brought tears to your eyes.

So many tell me, Harry you can't possible have Alzheimer's because you write so well. If they only got to look behind the curtain that I put up, they would be shedding the same tears my family is shedding. Glen Campbell has his passion for music and my passion is raising dementia awareness.

To use a phrase from a good friend of mind, we are trying to explain what it is like living with dementia, “while we still can”. It is so hard to believe what we say until you see a video like Glen Campbell's family made, then the reality of dementia becomes real. The next time someone opens up and tells you their story, don't judge them until you know their whole story, you may end up shedding some tears,

June 27, 2015

Have you ever had one of those days when nothing seems to be going right? I turned on my computer and it looked completely different, complete with a different background. Everything was missing like it rebuilt itself on it's own. Not in the mood to deal with this I turned it off and went out to my shop to do some wood turning.

I was having a good time turning and humming to myself when I had to changes the jaws on my lathe and a screw slipped out of my hand and fell amounst the wood shavings on the floor. I looked and looked but could not find it so being a common metric bolt, Hazel drove me to Home Depot and I got several packs so I would have extras.

I came home and finished what I was turning and turned on my stupid computer and this time it booted up normally. I don't know if I imaged all the problems I was having or maybe I'm getting better at controling the everyday problems that came up. This day could have led to a meltdown but Hazel kept me under control and left me handle it.

June 26, 2015

I just finished turning another 'box' for Hazel and I'm feeling pretty good about myself. I struggled turning this and at one point it 'slipped' out of my hands and went bouncing across the floor during my frustrations. I believe this is normal for someone living with dementia and we should be allowed to show our emotions as long as they are under control.

Frustrations leads to anger and only once did I lose control of my anger and it scared me to death. I hated myself and vowed never to let any frustration get the better of me. I had to learn this lesson and find ways that are more suitable to get rid of the tension and frustrations in my life.

I still get upset at times and we got very good at redirecting or walking away from a problem. Back in the day a good shouting match was fun but I can't afford to lose control of my emotions now because that filter in my brain that tells me to stop, doesn't seem to work anymore.

June 25, 2015

The dreaded eye doctor appointment today, To many choices to my liking . Which is better, this one or that one. We can put a man on the moon but they rely on someone with dementia to tell them which is better, It is fun to watch who gets frustrated first, me or the eye doctor.

June 25, 2015

I get inspired to write a lot of what I post by my friends and people I know. Today is no exception, Deborah White Cunningham, a member of Forget Me Not who daily posts some of the most inspiring pictures, posted a picture with the byline don't let anyone do it for you, set your own limits.

What a powerful message this is for people with dementia. So many times we are told not to do something because we MIGHT get hurt or our care partner hates to watch us struggle to do something not realizing we are climbing a mountain and it is a struggle for us. It may be painful to watch but look at the enjoyment I got from trying and in my mind, finishing it.

I may make the bed, probably not to your standards, but it looks great to me. I set my limits and feel pretty darn good about it.

June 24, 2015

The transgression of becoming a passenger from a driver can be dramatic, but so can so many of the changes that we are forced to make while living with dementia. Forgetting to feed the dog or taking out the trash on trash day is annoying but something that is expected because of our disease.

The changes that we face in the quality of our life are the hardest to face. We may need assistence in doing the simplest of tasks like getting dressed or maybe eating. I would be hard pressed to change a flat tire or change oil in the car. Things I did thousands of times before without giving it a thought.

The list of things I can no longer do is growing and some might contribute it to the normal aging process but I think it is my inability to concentrate and follow directions. Many of the household repairs are now out of my ability like electrical or plumbing repairs.

I like to think of these times as my golden years. I worked hard all my life, now I am being forced to relax and let someone else do the work. Maybe this is how my life was supposed to be.

June 23, 2015

Are you cheating on your spouse when you are flirting with them not remembering that they are your spouse? Some days I thnk about the stupidest things. The spouse mat be jealous even though it is them you are flirting with. The person with dementia only sees the person they love and responds to them.

I was asked this question one day by a women that visits her husband in a care facilty and he no longer recognises her. He is always rubbing her arm and trying to get close to her. She was concerned that he was trying to cheat with another women even though it was her.

I asked her how she knows he doesn't remember her and she responded that he no longer knows her name. I shouldn't have but I did, I laughed and tried to explain that love runs deeper then a name.

I can recognize Hazel without seeing her by the smell of her perfume or when she touches me. She can come up behind me and put her hand on my should and I know it is her.

People with dementia learn to use their other senses in ways that it is hard to explain. Get to know us and don't jump to conclusions because we don't live in you world anymore.

June 23, 2015

My dementia will never rob me of loving you. It may rob me of the ability to display my love like I once did but just look into my eyes or the way I caress your arm and you can tell that the love is burning as strong as ever.

Don't turn away from me because you think my dementia stopped me from loving you. The emotion is still there but the way to express it may be gone. So many times we read into situations and assume that emotion is gone but we only lost the way to show it.

Our physical love making may be gone but we can make love with our emotions. This type of making love is more interment and sincere then any clashing of bodies. We are still here but you will need to find the way to reach us, we may no longer know the way.

June 22, 2015

Taking one day at a time is one of the hardest lessons to learn. You need to forget about yesterday and not worry about tomorrow. Most caregivers never learn this because they worry about what went wrong and when it will happen again.

If I gave you a hard time yesterday, you have to let it go because today I may be a different person. If I'm allowed to give you a hard time today, you did not learn how to correct it yesterday. Yes it is true, you can't allow me to have my way all the time simply because I have Alzheimer's. I will get used to it and demand it it all the time.

Caring for someone does not need to be dreadful, talk to other care partners who are having the same problems and ask how they handle it. So much information and advice is passed along that could make you life more bearable.

June 21, 2015

I'm slipping away toward dementia but love me anyway. Don't be concerned or angry, there is nothing more that you can do for me except love me and let me know I am not slipping away alone. So many care partners are angry and I feel that emotion and it makes me just want to let go.

Fool me into believing that you are ok and take the burden off my shoulders. We worry so much about what is going to happen to the person caring for us that it shortens our life span. Wear a smile and maybe after awhile you may not be faking it.

June 21, 2015

I never read the book on how to become a good father and my kids tell me I became one, The same is true with my Alzheimer's. I never read the book on how to be happy with living with Alzheimer's, but I am. Life experiences teach us so much and we need to have a willingness to learn.

I was taught the things that cause me to be frustrated and need to remember to stay away from them. One of the hardest lesson to learn is to stop pitying yourself and complaining how hard it is, chances are it will be getting a lot harder so it's important to find ways to deal with it.

Don't sweat the small suff and bounce through life, don't try to go through your problems but find way to go around them. Just keep moving forward and never stop in the quagmire of the frustrations. Don't take your life so seriously that you miss all the goodies that are around you. Living with dementia is hard, but not living is harder.

June 19, 2015

Another wonderful day in a string of good days for me. I can't believe how blessed I am living with dementia. I finished my PowerPoint presentation that I will be using during my talks and believe it turned out pretty good. I am now trying to make it into a video with narration so I can post it.

Although working with computers was always a way of life with me, I struggled because I lost my finess using PowerPoint. I refused to give up and I'm proud of what I accomplished. My woodturning skills, although not as good as they once were, is bringing me so much enjoyment and another purpose in life.

I am a firm believer that you can be happy even though you are living with dementia. Don't wait until your light goes out and it is to late. Be angry, be afraid, get frustrated and then move onto living with your dementia. Find a hobby, do things you enjoy and stop saying I can't do that.

June 18, 2015

It amazes me how many dedicated people we have raising dementia awareness even after the person they were caring for passes on to a better life. They could distant themselves from the horrors of dementia but chooses to use their experiences to continue to help others.

They are the true heros after paying their dues, they continue to pay in order to help others. All care partners know the hardships and heartaches that go with caring for someone they love but to care for someone that you never met and share the same frustrations and walk with them through their journey is beyond belief.

June 18, 2015

Several of my friends are being discouraged from writing about their disease by critics that assume they know more about their diagnosis then their doctor. They claim just because they are able to state a point that they can not have dementia. In my eyes they have three choices, the first is to try to ignore them but the sting of their remarks still hurt. I don't like being hurt so this choice is not good for me.

The second is to be polite and try to educate them on how everyone is different living with dementia. I don't like when I have to defend my diagnosis because it makes it sound like I'm trying to cover something up, so I shy away from this choice. My thoughts on dementia are my thoughts and right or wrong they are still my thoughts.

The third choice is the one I usually take. I figure if someone is going to attack someone with dementia, they should be strong enough for my reply. I usually choose to cut them off at the knees for being so damn ignorant of dementia. They may be caring for someone with dementia but they only know that one person. Unless you are living with this disease you only know what you observe and that is the extent of you knowledge.

Before you accuse someone of misrepresenting their disease, learn about them and how they think. There is never two people alike in the world of dementia.

June 18, 2015

Somewhere over the rainbow our dreams come true. Why wait until we cross that rainbow so we can make our dreams come true. Big deal we have dementia and it feels like our life is over. That is no reason why we can't have dreams.

So many times on the darkest of my days, I'm sitting on my chair dreaming of a better time and allowing myself the pleasure of living those dreams and the darkness fades away. Dreams play a major role in my life, they motivate me into doing the things that inspire me and keeps my feet planted on the ground so I don't wander off into the fog.

Dreams, pleasant thoughts, whatever you want to call them, are good. They let me know that my disease will not control me and drag me away.

June 17, 2015

I used to have problems remembering things that happen to me from long ago but now they are clear and recent things are hard to remember. I can remember the days of the 60's like I'm still living them. I can relive history in vivid details.

So many of the people I hung around with are now dead but the memories are still with me. Thinking back I lived an exciting life. I was given the opportunity to learn computers in the early days advancing to the most sophisticated systems. I lived in the world of 1's and 0's and everything was logical to me.

Those days were fond but I now live in a grey world muddled with confusion. I remember the wonderful times but can't remember how to do them again. It is probably better this way because I love remembering the good times. They are so much grander now.

June 16, 2015

I'm a firm believer that you can retrain a old dog and someone living with dementia new things. I would like to use PowerPoint presentations in the talks I do and although I used them years ago, I forget the basics. I am struggling but determine to relearn something that is fun to me.

I had choices, let someone do it for me, forget about it entirely or dig in and give it a try, Of course I wanted the feeling in knowing that I could still do it and started to play around. It may not turn out as good as I was once able to do but it is no longer a job to me and I have this new found creativity from my dementia.

This is called not letting my Alzheimer's control my thinking into believing I can no longer do the things I love. Whatever you call it, I'm enjoying it.

June 15, 2015

There was the day that only Hazel took my breath away but now the heat and humidity does the same thing. I used to be able to eat the extral large but now the medium fills me up. So many things have changed over the years and not only because I have Alzheimer's. I believe my back would still ache even if I was never diagnosed with dementia.

We tend to blame many of our problems on dementia when it is a natural turn of events. So many times I pull out my 'Don't blame me for doing something stupid because I have Alzheimer's' card. It is so much easier to put the blame somewhere else. There are times when we have to be accountable and stop blaming our dementia.

If I was always a grouchy SOB before my diagnosis, chances are I will still be. If I carried a chip on my shoulder, it will still be there. Our disease changes so many things but a lot of the things we do may be carried back from our childhood. Don't blame your unhappy life on your dementia when a attitude change may solve all your problems.

June 14, 2015

Happy Harry is at it once again, spreading sunshine like Johnny Appleseed spreads his seeds across the country. I know how hard it is living with dementia, how hopeless it feels at times but I also know the feelings of being free of the fears and enjoying what little I still have left.

My attitude is what gives me my inner peace and lets me deal with my dementia. My experience is if I have a bad attitude, I will have a bad day. Not the other way around. A bad day will not give me a bad attitude because there is always a reason why I am having a bad day.

Don't try to fix what can't be fix but rather do things that you are still able to do. Don't give up, find a way to adapt to the things you think you can no longer do. Just because it is hard doesn't mean you can't do it. Become a mountain climber and climb those mountains in your life.

June 14, 2015

Do you ever get that horrible pit in your stomach where you feel you are all alone and nobody understands what you are going through? You cry alone because you have no one that you feel comfortable talking to. There are places to get the reassurance and Forget Me Not is one of many support groups that can help you.

The important thing is to join a support group that will LISTEN to you and not judge you. The last thing we need is for someone to tell us how to fix our problems and not support us. It is so easy to come up with the answers when you are not facing your problems.

Some groups are nothing more then doom and gloom and do nothing to try to help you find the answers you are looking for. It is necessary that you have a good support system if you are living with dementia. If you are a person living with dementia or someone caring for someone, find the support group that suits YOUR needs and begin to help others like you are being helped.

June 13, 2015

Have you ever noticed what a hoot it is living with someone with dementia. I'm not trying to minimize the fears and frustrations of our disease but you have to admit that sometimes the things we do is outrageous and creates ever lasting memories. You can't help but remember the dumb things we do and laugh about them.

A successful care partner is one that walks away after their job is completed with these hoot memories and lets the darkness of our disease fade away. Keeping you sense of humor and recognizing the things that will become memories is a major part of living with dementia.

June 13, 2015

My plants are watered and my bird feeders are full and I'm ready to start my day. My day is built around a routine that differs slightly from day to day. I take care of my plants and birds then start looking around the house to see what needs 'fixin'.

This is when Hazel starts her redirecting routine to interest me into not trying to fix anything. It's not like I can't fix anything but at times I get over my head and get frustrated and annoyed. Hazel has learn the lesson of redirecting and avoiding the meltdowns of my stubborness.

Being a care partner is much more then caring for us but learning how to out smart us and keep us from frustrating ourselves. You have to put away the thought of, “what were you thinking” and try to stop me from going down that path before I do. It's a game we play to keep peace and harmony in our lives.

June 12, 2015

Today I am flying higher then a kite and enjoying my life even though I am living with Alzheimer's. Last night Mary Howard and I spoke with a group of 44-50 people at the Lancaster General Health Campus about our lives living with this disease. We do this every 3 months to newly diagnosed people and their care partners to let them know that there is life after your diagnoses and get them on the right track with information.

We have a question and answer session after we speak and everyone appears to be involved and more relaxed about their future. It is so rewarding to me and gives me the answer to why I am doing so well living with Alzheimer's. Raising dementia awareness and helping others cope with this horrible disease is my passion and reason for living.

Giving of your time and experiences benefits so many starting out on this road and the warm feeling you share are priceless. Join us and get United Against Dementia, climb those mountains and fly with me.

June 10, 2015

As we age we lose so much of our freedom. There comes a time when we are no longer able to do the things we once did. Most times we agree to these changes unless you are living with dementia. We are fighting the battle of losing ourselves that any limitations that are put on us is a major battle.

Being told that we can't do something just doesn't sit well with us. We always did those things not thinking that we may not be capable of doing them safely. We only see that our freedom is being taken away.

It may be a simple thing like don't go to the mailbox to get the mail because heavens knows what you will do with it. Bad example because I would never misplace the mail. I am no longer allowed to climb a ladder to repair I piece of siding that came loose although I'm pretty sure I could do it.

Living with dementia means losing your freedom to do the things that would probably kill you, if someone didn't step in and stop you. I'm not sure why we get so upset.

June 8, 2015

It's been asked if I write my own material or does someone else do it for me. Join me on Dementia Chats or any of the other video chats I do and find out for yourself. You will find out that a lot of water went over the dam in the last 11 years since I was diagnosed with dementia, probably Alzheimer's and I learn a lot from the school of hard knocks.

My passion in life is raising dementia awareness and fighting for a better life for everyone living with dementia and that contributes to my well being. I write about my thoughts on dementia and what it is like for me living this disease. I disappoint some because I am not as bad as their loved ones but then again, I don't sit around and pity myself because I have Alzheimer's.

I try my best to motivate people into knowing that there is life beyond your diagnosis. It is a sure thing that the day will come when I am unable to do the things I do but until that day comes, I will continue to answer the question, do I write my own posts with a smile on my face.

June 8, 2015

How far down the road can I plan my future. No one knows what their future holds and I'm included in this. My future is likely to be day to day and the days of long range planning are over. When I wake up in the morning I never have a list of things I want to complete because I never know what my day will be like.

I may be on the top of my game or I may be lost in the fog of nothingness. Some days it is very hard to hold my concentration and others I appear like my old self. This disease is strange in the fact the my days vary so much, I am not in a steady decline, like each day is a little worse then the day before, but can best be discribe as being on a roller coaster.

Some days you bite the bear and others, the bear bites you. This is what we call our good or bad days. Whatever my future holds, Hazel and I will see it through together and the only thing we can do is throw our arms up and try to enjoy the roller coaster ride.

June 7, 2015

Words, words, and more words drive me crazy. Several people this past week told me that they were rediagnosed with Mild Cognitive Impairment (MCI) and not Alzheimer's. I said OK, what does that mean? Even though they have been treated for Alzheimer's the past several years their doctor says, opps you don't have Alzheimer's but you have Mild Cognitive Impairment (MCI).

That doesn't sound bad because Mild is a lot easier to swallow then Alzheimer's. Although MCI leads to Alzheimer's, you have to grow into it. Are they now saying, once again, that Alzheimer's is a old person disease? Will they withhold Alzheimer's treatment because you only have a MILD case of Alzheimer's

I am so tired of skirting the issue that we are heading for a Azheimer's epidemic and changing the vocabulary just to bring down the numbers of people with Alzheimer's and making it sound more pleasant to the ear,

Do people with MCI avoid the fears I have of dying because my diagnose of Alzheimer's is comfirmed. Will I be cured with a simple rediagnosis of my Alzheimer's with MCI. I can see how the numbers for people living with Alzheimer's will go down and the numbers for MCI will go up but what the heck, it is MILD.

Maybe it is just the use of the word Mild that drives me crazy because I will never believe there is a Mild case of dementia. Only people not living the disease would assume it to be mild.

June 6, 2015

If you told someone with dementia a thousand times and he still doesn't understand, then it is not the person with dementia who is the slow learner.

June 6, 2015

You know you are going crazy wondering what the scoop is about in the Forget Me Not groups but darn it you forgot where to go to join them. Here are the links encase you would like to join us. Not only do we offer superb dementia support groups but women only groups, a Spanish group and many other groups designed to get away from the stresses of dementia. Just click on the link to the group you would like to join and add you name. It's that easy.

Forget Me Not – Alzheimer's Dementia
https://www.facebook.com/groups/780755315365229/

Forget Mer Not – Lewy Body Dementia
https://www.facebook.com/groups/1466664356939288/

Forget Me Not – Frontotemperal Dementia FTD)
https://www.facebook.com/groups/532599406876713/

Forget Me Not – Vascular Dementia
https://www.facebook.com/groups/1400660376821395/

Our Spanish group No me olvides
https://www.facebook.com/groups/431530526921569/

Forget Me Not – Memory Cafe
https://www.facebook.com/groups/1398777350367388/

Forget Me Not – Dementia Angles Fly Free
https://www.facebook.com/groups/641793599210898/

Forget Me Not – Crafts and Gardening
https://www.facebook.com/groups/465423030194317/

Forget Me Not – Fun Group
https://www.facebook.com/groups/187847681338933/

Forget Me Not – Holidays
https://www.facebook.com/groups/186650374850250/

Forget Me Not – Recipes
https://www.facebook.com/groups/269410783188997/

Pathway To Knowledge
https://www.facebook.com/groups/572307532828859/

Forget Me Not – Fit 'n' Healthy
https://www.facebook.com/groups/1632267876995869/

June 4, 2015

This past week has been rainy and cloudy and drained most of the motivation in me. I get my strength from being out in the sun and enjoying the outdoors. Weather plays a big role in the moods of someone with dementia and I get lazy and spend more time in that far away place where I feel safe. Isolating myself socially is one of the worst things I can do while living with dementia.

I find myself looking at my monitor trying to think of something to write but my thoughts are empty. The motivation to explain how I feel just won't come out. I have to much time and start to worry about the progression of Alzheimer's and how it is changing me.

I think about my friends living in nursing facilities and this must be a normal way of life for them. The sun will come out and I will regain my strength but what motivates someone living in a care facility? I know some facilities have activities but many just have a tv that they sit around and stare at the screen most of the day. They are unmotivated and in their safe place.

More people live alone in their homes because of the high cost of nursing facilities and the loneliness becomes unbearable for them. Changes could be made but the cost of overseeing these changes would outweigh the benefits. Changes will only come from us that are motivated to make them, get United Against Dementia and help make those changes.

June 3, 2015

I often wondered why in the world do you have to know how to spell a word before you can find it in the dictionary? This happens to me all the time when I'm writing my blog and need to spell a word. I tried using autocorrect and it gives me so many choices that my thoughts drift to something entirely different then what I was thinking.

Life is not fair to someone living with dementia. I keep all my stupid passwords in a little notebook so I don't forget them, only to lose the notebook. I stopped wondering why in the world do I need so many different passwords only to have to change them every couple of months.

Why do I still have a 2012 calendar on my desk and 27 pens that ran out of ink in my desk. These are my thoughts when I get bored on a rainy day. I thought today would be a good day to clean up my office but I can't find anything that needs to be thrown away.

In case anyone is wondering, Hazel is working and I have no adult supervision with me today. Jade is even hiding from me today. I dug out my police scanner only to find out that they are now using a different system that my scanner does not receive. Life is so cruel.

June 2, 2015

When you have dementia, it is fun to play I wonder what that does. When I find out, I wonder how I am going to cover it up and hide it from Hazel. I usually have to pull out my Alzheimer's card that states it is understandable when I do stupid things.

Maybe my Alzheimer's is reversing and taking me back to my childhood days when that game was one of my favorite. I love taking things apart but I'm not so good anymore with putting them back together. I usually add them to the stack of things to look at later.

You should hear Hazel scream when something breaks and I tell her, I'm on it. I still have a tool belt and love to scare Hazle by putting it on and telling her I'll be done shortly. Being a caregiver is so much more then caring for someone, it's putting up with the things that make them happy.

June 2, 2015

Little things that annoy me usually happen on a rainy day and yesterday was no exception. For some dumb and stupid reason the image on my monitor flipped and was laying on its side. At first I thought it was really cool until I reasoned I couldn't operate the computer like that.

I unsuccessfully fooled around until I got upset and just powered down the darn thing because I was unable to reboot it. I was so proud of myself when everything appeared to be back in order until windows booted up and then that darn screen flipped once more and agitated me all over again.

Knowing that my computer was broke and needing help I went to Hazel's computer and asked my trusted friend Google how to unflip my screen and low and behold the dummies that wrote Windows intentionally added a hot key to intentionally do this. Why in the world they would do this is unbeknown to me unless they just wanted to agitate me.

My buddy Google helped me correct my problem and taught me a lesson not to play with the keys on my keyboard on a boring rainy day.

June 1, 2015

Walking down the path of dementia, there is only one way for me to go and that is forward. I can never return to my old life so I keep walking. To me it doesn't matter where I am at on my walk, I just need to keep going forward. So many worry where they are at in their walk but what does it matter. You can not change the path you are on, you can only adapt to it and try to avoid the bumps.

Making the most of your life, no matter what degree that is, is the most important thing to consider. Along the way there will be people trying to plant the seed of doubt but life is so full of temptations. False hopes are evrywhere and only lead to a broken heart and spirits. It is ok to stray from the path at times but you will always be drawn back. You can not ignore or hide from the fact that you have some form of dementia. Pretending doesn't help because the damage being done is irreversible.

So what is the solution, to me it is living every day to its fullest, not worrying about the things I have no control over and be thankful for the things I can still do. I think by far you can not be afraid of the path you are walking. I honestly believe I am walking toward a better life into a world without dementia.

May 31, 2015

Can you see a silver lining living with dementia? Did you ever look for one? We get so wrapped up in our doom and gloom of our disease that often times we never notice it. Dementia is a horrible disease that we need to find a cure for but we also have to look at the lessons that dementia is giving us.

It is hard to look at the brightside when you are up to your neck in the quicksand and some dummy tells you to look at the bright side. You may never find a silver lining but one thing is certain, it will not drop into you lap, you need to search for it.

You can not live in the dark side of dementia although it makes it very convenient for you to do so. We all have silver linings because our dementia could be a lot worse. Count your blessing and give thanks for the things you are still able to do. Don't let your life slip away when you have so much to live for.

May 30, 2015

Somewhere along the path of Alzheimer's I lost my 'giveadarn'. Things that were once so important to me just don't have the same appeal to me. I pick and choose my arguments but I give it my all when I do pick one. I tend to overlook the petty annoyances that once lit my fuse.

I really like not having a 'giveadarn' but sometimes it infuriates Hazel. She thinks at times I don't care with my lackadaisical attitude but I feel so much better without it. I lost control over my anger one time and it scared me. Dementia has a way of doing that. Since then I walk away from a problem and never look back. Right or wrong, it works for me.

Anger is so hard to control and I find it is best for me to simple avoid it. Now I have to work on my enjoyment of karma.

May 28, 2015

When my candle burns out it is going to be because it was time and not because someone blew it out. I tell this to everyone I talk to and plant the seed of living beyond your diagnosis. Every couple of months Mary Howard Reed and I speak to newly diagnosed people with dementia at the Lancaster Health Campus and tell how we learned to cope with our disease and broke down the barriers that our dementia put up.

It is so rewarding because when I was diagnosed there was no one there to show and tell that there is life beyond your diagnosis. We make it fun and enjoyable and not some doom and gloom medical sermon. We do not minimize the hardships but we do try to explain that it is mostly up to you if you want to live out your life happily.

Don't wait on that magical pill that presumably will make your life better. Work on a better quality of life for yourself and everyone else living this disease. Take control of your life and climb those mountains. When you reach the top of one of these, tell us how you did it so others may also learn to climb theirs,

May 27, 2015

You may not want to read my post today concerning my thoughts on dementia because it is the raw thoughts and emotions of a person with dementia. I use the term, person with dementia, because that best describes who I am. I was diagnosed with dementia, probably Alzheimer's, eleven years ago and I am not ashamed or embarrassed about my diagnosis.

I do get upset when a layperson questions my diagnosis or my passion for raising dementia awareness and I get overly protective when a friend living with dementia gets hurtfully attacked by someone that is trying to prove they are right and know more about our diagnosis then we do.

Truthful Kindness is one of the kindest, loving person with dementia that you will ever meet walking on God's earth yet she was personally attacked by people that attacked her integrity, not her issues. As a personal friend and advocate of dementia awareness, I can not ideally sit by and let this happen. I have thicker skin then Tru and will debate my personal life and beliefs with anyone but be aware, you better know what the hell you are talking about because I do.

I have lived with this hellish disease for eleven years and seen and felt things that you could never imagine in your lifetime. My ability has nothing to do with my disease but my passion and reason for living. When we talk about our life, we are way outside our comfort zone and very vulnerable to anyone that wants to personally attack us.

I have personally been attacked and hide myself from the hurt that was inflicted but no more. I paid my dues and have the experience to back up anything that I say and will stand up to anyone that pretends to be offend because I am a person with dementia.

May 26, 2015

I am doing so well living with my dementia that I am becoming unbearable to be around. I always have a smile and will always offer you my hand even when I myself am having a bad day. I will bend your ear talking about dementia awareness and living beyond your diagnosis.

You will scratch your head wondering how I could possible be so happy. You will think I am one of the lucky ones and eleven years ago when I was diagnoses with Alzheimer's, there was some kind of mistake. Of course you never saw the gallons of tears that were shed or the nights I awoke sweating with fears.

There is no way that you could possibly know the things I lost or the life I once had. You see this happy go lucky person living with dementia and wonder why. The answer is simple, I found a purpose for my life and that inner peace that goes with it. I am not afraid of my future and will deal with whatever comes up. It is a very good way to live and I am more then willing to tell you how I am doing it.

May 25, 2015

This is what I see when I am sitting in one of my favorite places, my upstairs deck. Besides having my best buddy Jade there with me, I have herbs which give off the best smells and wind chimes to help sooth my spirits. I have colorful flowers to brighten my spirits and humming bird feeders to top it off.

When I create a get away place, I try to add those things that pleasantly effect my senses. I bought a water feature for the the deck but decided to keep it in my den for when I am indoors at the computer. We removed the steps that led downstairs and installed railings on all sides. This keeps it safe for me and prevents me from wandering away.

I spend hours on my deck reading and listening to music. We created a safe sanctuary for me where I can sit in all types of weather and find my inner peace. Hazel's and my wish is that as my Alzheimer's progresses I have somewhere to escape the realities of my world and we are creating that in my home.

May 24, 2015

I have this overwhelming need to be outdoors. I could sit for hours on my bench just soaking up the sun. I'm warned about getting to much sun and not being healthy for me, but I just don't care. I have a need to be outdoors and enjoying the nature that surrounds me.

Sometimes the mental relaxation I get is much greater then any physical discomfort I may get. Let me alone, let my body do what it has to do and don't always try to keep me busy. I am ok there humming to myself and letting my mind drift away to more pleasant times. I am sorry that you can not be part of my life at this time but sometimes you need to walk alone.

May 22, 2015

As a person caring for someone with dementia, have you ever asked the question.....:How can I get him/her up and moving in the morning”? This is a good example of poking the bear, you will have your hands full all day long. Don't try to put your loved one on your schedule because it will not happen.

We beat a different drum and have our own schedule. We may be a happy camper if we are allowed to sleep later in the morning even if your day starts at 6:00. Let me know how you make out waking me at 6:00 to start the day with you. I bet the farm that you will regret it and have problems with the bear all day.

Unfortunately your schedule may not work for me and if you treasure peace and harmony, you will find out my schedule and work around it. Learning what is and what is not important will make your task of caregiving so much easier.

May 21, 2015

If you were hanging from a roof by your finger tips and someone offered you their hand, would you let go and grab it? So many care partners are given this decision and don't know what to do. One example is if the decision to place your loved one in a care facility and you are unsure if you want to let go and have someone else take over.

So many see it as a failure if they need to ask for help and continue hanging by their finger tips. It is my belief that you can only hang for so long before something drastic happens. I see a lot of people caring for someone with dementia bottle up their emotions until they slip and fall.

It takes more strength to let go and grab that hand and accept the help that is being offered to you. We need to do a better job in explaining the help that is available to you and letting you know that you do not need to do this alone. Become a part of the people reaching out and helping those hanging all alone.

May 20, 2015

Like everyone else, if I did not take the opportunity to do something, I may regret not having the chance to try it again. Just because I have Alzheimer's does not mean I can't try something I would have never done before. Now before you get your britches in an uproar, if there is a safety concern, that is entirely a different matter.

I have the right to try something and fail even if I look foolish to you trying it. Some of my failures are the best memories I have. What was I thinking never enters into my mind, just the feelings of stepping outside my shrinking box and trying something new is the rush I get.

To you, skipping down the sidewalk may be foolish and you may be tempted to tell me to act my age, but to me I am reliving a part of me that was not taken from me. Keep me safe but let me be free, don't restrict me from enjoying life just because I may look foolish. Climbing the mountain is the thrill, not sitting on top.

May 20, 2015

What can you possibly say to someone that is grieving about the things they lost? They are watching their life slowly drift away and it is getting kind of scary to them. They are losing their prize posessions and can not do a thing about it.

They are unable to rebuild that life because it will be completely gone and the memories will never be thought about again. It is scary but you can not be consumed by it. Entering into this disease we know that some things will be lost but we can not worry about them.

We can move forward and create new memories, They may not be as great as the ones we lost but perhaps, they will be better. These new memories are unlike any that you have had previously, because they were created living this new life. We are looking through entirely different eyes and see things so much different. It is an exciting life if you allow it to be,

May 19, 2015

Today Hazel and I went to see the Glen Campbell movie and it was a bitter sweat experience. First because it was so good and second because I see myself in Glen Campbell's shoes. I am living the same life as he is, his passion is his music and mine is raising dementia awareness. When he is playing before a audience, it is hard to think of him having Alzheimer's.

The same with me when I get on a roll speaking about dementia. It is during the downtime that you realize we are losing the battle and parts of our passion. Just like Glen, I am encouraged to follow my passion with the love and support of my family and my longevity is a result.

Glen and I can have a very short fuse and be extremely argue mental. The memories are fading and the world of nothingness is approaching. I would not hesitate to go see it again and walk with him on his journey.

May 18, 2015

The question comes up from someone caring for someone with dementia, how do I get over the guilt I feel? There is "real" guilt - when you've done something wrong such as stealing, lying, etc. - and there is "false" guilt, when you've done something that you think you've done out of selfishness or to make your life easier.

After you understand both types of guilt, it is easy to see you have nothing to feel guity about. I think it is easy to feel guity because you want to fix the problem and can't. This is especially true if you were always the fixer in the family and now you can't.

As someone living this disease, we say quit being so hard on yourself, you are doing your best under the circumstances. You can't believe this because you feel it is your job and duty to make things better and you can't. The day will come when you can look back and know in your heart, you did your very best and that is something we living this disease knew all the time.

May 17, 2015

Have you ever cried and not shed a tear? We do it all the time living with dementia. We don't want to upset you and let you know how scared we really are. If we open up to you and tell you what scares us, we are validating our own fears.

Sounds stupid but that is how we think. The unreal is so real to us and we believe what our mind is telling us and never question it. I am told not to sweat the small stuff but that is exactly what upsets me the most. The simplest of things can upset me beyond my comfort point and turn me into this person living with dementia.

Alzheimer's and any other form of dementia is so much more then what most people think. To really understand what is happening to us, you first need to sit down and talk to us. Then you must win our trust so we open up and talk to you.

May 17, 2015

The past couple of days has been compiled of highs and lows. I feel the highs when I am talking to someone and see in their eyes the joys I am living. The lows pull me aside and remind me not to get used to the good life. I still have Alzheimer's and it lets me know how misable it can make me.

The lows get planted with the self doubt I put on myself. At times I feel I can not do anything right and my actions prove it. Hazel keeps telling me not to be so hard on myself but I am not kidding myself, the battle is being lost.

I have been on this ride for eleven years now and quite frankly I am tired of it. I hate the feeling of feeling worthless and losing control of my emotions. This will pass only to begin again several days down the road. So goes the cycle of living with dementia.

May 16, 2015

How many practice Validation Therapy which is the caregiver validating whatever the person with memory loss believes to be true in an effort to keep them calm and engaged? If you don't, you may want to learn more about it.

Hazel is a master at this. If I see something she doesn't, she will agree with me then redirect me to some other topic. She knows she will never win the argument of trying to convince me I am wrong and believes in peace and harmony over being right.

Going with the flow is hard at times because you may feel you are adding to the dementia but like I said a brazillion times, you will never win a argument with someone with dementia. Agree and then move onto another topic will save you a lot of tears and hair pulling.

May 13, 2015

Have you ever considered the gifts we received from getting Alzheimer's? Most times we think about the heartaches and hardships associated with living with Alzheimer's that we wouldn't ever think there could be a gift somewhere.

Can anything good come out of losing our skills and forgetting so much of our past? Only you can answer that question but in my case, it forced me to slow down and start a new life living with my disease. I forgot so much of my past and a lot of it was the bad things that accursed to me. Maybe forgetting the bad things is a gift.

Being forced to slow down is definitely a gift because it made me aware of the things that are important to me and look at my life from different angles. Some will argue with me but they received the same gifts I did and may not know it yet.

May 12, 2015

The satisfaction you get when you complete a task when you have dementia is so rewarding. Not only did you get the job done but you did it. My friend Mike Good speaks for everyone living with dementia when he says, “Don't do it for me, do it WITH me.

Just having a observer to keep me safe is helpful when I try to fix something around the house. Hazel helps me often in finding the right tool to do the job. In my mind I know exactly what I want but often times I don't recognize the tool and assume it is lost.

I love to tear things apart but so many times have difficulty putting them back together and that is when it is nice to have someone else remember what I did. Of course I have to have music playing when I'm working on something, if by chance I forget how to reassemble it, it goes on the pile of things to fix tomorrow.

May 10, 2015

What does it take for your care partner to make you happy. The answer is simple, nothing. Happiness has to come from within and there is nowhere you can buy it. I see so many people living with dementia and they are miserable because they are waiting for someone to make them happy.

We put so many demands on the person caring for us that we don't give it a thought. We get angry when our simplest of needs are not met and expect them to cater to our every wish. Is it the disease that is doing it or are we lashing out at our disease?

I think we unintentionally use our dementia to get our way. There are so many people that are demanding and not because of any form of dementia, it is just their personality. I have been encouraging everyone with dementia to get control of their life and make their own happiness. There will come a time when you will need more care and you are unable to care for yourself but until then, do your share in the caring of your needs,

May 9, 2015

I came up with my own three stages of living with dementia and I bounce between these stages on a regular basis, almost everyday. I have not come up with names for each of these stages but I think they fit the life I am living.

Stage number 1 is a happy stage.where I am at peace with my dementia and I am able to function like a near normal person. I found my inner peace and accepted my diagnosis. I am foolish enough to believe that changes are happening and a better life might be right around the corner.

Stage number two is a reflective stage where I wonder what the hell is happening to me and how am I going to handle it. I spend a great deal of time worrying about my loved ones once I pass. I turn to my higher power and pray for just about anything. It appears more and more of my time is being spent in this reflective stage.

The third stage is the dark side of dementia. All hope has been lost and I no longer have control over my emotions. I am lost and unable to function. This is the hardest of the stages to escape and all my fears come forward.

This may not be true for everyone living with dementia but it fits me like a glove.

May 8, 2015

Three out of three lawn mowers had problems within days of each other. One in still in the shop, another I replaced a belt and the third I just started to laugh at. Problems like this will upset the apple cart and drive me into a major anxiety attack.

Hazel kept me from going over the edge and we went shopping for flowers. Like most people living with dementia, I am unable to handle the simplest of problems and feel like a good cry because these things never bothered me before.

I feel inadequate because I should be able to not only control my emotions but handle day to day problems. Everything is a major issue with me and I don't know how to fix it. Alzheimer's is way more then just forgetting things, it robs you of your respect and dignity.

May 7, 2015

I feel so happy today. I am surrounded by people that share my dream of living beyond our diagnosis of dementia. I am self centered and only look through the eyes of someone living with dementia and see so many people giving themselves with no expectation of getting anything in return.

These people are truly Guardian Angles and treat us with the dignity and respect we deserve. They don't consider us handicapped only someone that struggles with memory problems and in need of help doing everyday things that come naturely to them.

They pray for a cure but work tirelessly toward giving us a better quality of life. We can never pay back enough thanks to the people that care for us, only the realization that they did their best in fighting along with us this unbeatable disease. I will not lose my battle if I know in my heart that you will be ok. Show me before I die that you are strong enough to live without me.

May 6, 2015

I tell everyone I meet to Live in the Moment. Some look at me like, here he goes again, they have no idea what I mean. This is especially important if you are living in the world of dementia. You have no time to worry what is ahead because there is nothing you can do to prevent it.

If you don't enjoy the moment, it may not ever come again. You may be having the best day of your life and something triggers the hard times and sends you into a tailspin. Don't be concerned with the things you lost but appreciate and use the things you still have. Don't wait until tomorrow to enjoy today.

Wear a smile because it brings out the beauty within you. It not only makes you happy but everyone you come into contact with. Don't put off the things you want to do, do them now and live in the monment.

May 6, 2015

I keep asking the same questions and making demands that are driving you crazy.You get frustrated, angry and then get sorrowful because you took it out on the person you are caring for. This happens everyday to a care partner of someone living with dementia. What can you do about it because your nerves are all but shot and you are on your last leg.

Stop fighting the problem and look for solutions. There is always a reason why I an driving you crazy, it is usually not because I intend to. I may be bored and need something to occupy my time and you must realize that I get tired of just sitting in my chair and waiting to die.

Maybe I just need you to be part of my life and feel neglected. So many things can be causing these problems and stop taken it personally and look for a way around it. Ask other care partners how they handle it and learn from them. Stop trying to care on your own and know it is ok to lean on someone else.

May 6, 2015

What happens when your care partner is in denial and you are not. You realize that you have problems and understand why you were diagnosed with dementia. When the people around you, that will be caring for you, can not accept your diagnosis your adjustment to your new life is going to be harder to accomplish.

There will be doubts of you faking your illness or taking advantage of the situation but as time progresses, dementia will always win and so much wasted time that could have helped you adjust, is gone. You not only have to fight your disease taken over but you also need to convince the very people you love that you indeed have dementia.

So many need to see physical clues and with dementia, there may not be any. That is why I look so normal to you without knowing the turmoil that is going on in my life. Denial always goes away with time because the symptoms progress to the point when you say, “I wish I would have done things different”.

May 5, 2015

I am finding it harder to make decisions. In fact I tend to get upset when I have to make a decision. It doesn't matter to me, just tell me what you want me to do and don't make me decide. I am also getting overly upset at things that differ from my normal. The littlest of problems are major concerns to me. If the lawn mower doesn't start, my world comes crumbling down. I can no longer think a problem through like maybe I never put gas in the mower or some other minor problem.

It is extremely hard to follow a conversation when two people are talking at once and I need to decide which one to follow. I feel like I want to tell both to shut up and just let me alone. I believe people with dementia get frustrated easily and anger is the only way they can process what is happening.

Hazel got very good at detecting when I need a timeout or quite time. She senses when my anxiety is rising and recommends to me that I need a break and quite time. Don't poke the bear is a way of saying never push someone living with some form of dementia past their limit. Learn what their limit is and avoid it if you want peace in your life.

May 3, 2015

So many battles with dementia have to be fought alone. Your diagnosis, denial and finding your inner peace must be won by you. Only you can fine happiness while living with dementia. When you are first diagnosed with some form of dementia, you see the world as being very black and scary. You have no idea what the future will hold and you are very scared.

With a lot of effort on your part, you come to grips with your diagnoses and move past the part of denial. The world is turning grey but you still have no idea what the future holds and you are still scared.

The next battle is one of the hardest and that is acceptence of your dementia and learning to live within your new world. You will find you are changing into this new person that at times, you don't like. It doesn't happen over night but you find the strength and belief that there is life beyond your diagnosis. You are slowly moving towards your inner peace where you can live in the now and present. The world is brightening and you find hope. You no longer think to much about the future and you are not so afraid.

You find your inner peace and believe it is what it is and there is nothing to be done to change it. You find peace with this life and start enjoying the world around you. You actually stop and smell the roses and listen to the birds singing their songs. The sun is shining brightly and you heart is full of happiness. You have no idea how you got here but you are thankful. You realize you are walking toward a better life and you are no longer scared and very hopeful for the future.

Looking back, you realize you climbed your mountain and found happiness living with dementia.

May 3, 2015

The past several days most of my time has been spent making Hazel's garage into a clutter free and useful workshop. The only rule I had to follow was Hazel had to be able to park her car in my “workshop”.

I found so many treasures in the clutter that for some reason Hazel thought was junk. We negotiated and both ended up pretty happy with the results. It was a back breaking job but Hazel was by my side getting just as tired and dirty as I was.

I am here before you as an example that there is Life Beyond your Diagnosis. I am blessed in so many ways but I also make a great effort in enjoying whatever time I have left. Don't live in the doom and gloom of dementia, wear a smile and get out there and help others enjoy what you have.

May 2, 2015

My heart is heavy with the passing of another friend due to dementia. I couldn't begin to count how many friends I lost, because they lived with dementia, since I joined Facebook. I have no time to worry about my own future because changes need to be made.

I can't afford to doubt my efforts in raising dementia awareness and collectively we need to work harder. I know the day will come when I am unable to stomp the streets telling my story but by golly until that day comes, I intend to make sure you hear my voice and message.

I know dying is a natural thing and everyone does it, but why must it be so hard on people living with dementia? Changes will be made through the private sector before we get help from our government.

Being United Against Dementia is not only our rally call, it is the way we will get the changes to ensure everyone living with dementia can do so with respect and dignity.

If you are not United Against Dementia, what are you waiting for? It takes little time and effort to offer support to the millions living with dementia. Join us and open your heart and receive a smile in return.

May 1, 2015

Today Hazel and I attended a Making a Difference in the lives of People with Dementia seminar that was held at the Lancaster Health Campus. Registration started at 8:00 and the seminar ended around 12:30-1:00. I walked out with a bag full of goodies and a wealth of information.

This was one of the best seminars I attended with various speakers talking about different topics, We received a copy of The 36-Hour Day and several other books that covered home care,and Benefits & Rights for Older Pennsylvanians.

We received information on Nursing facilities of Lancaster County, where I live, plus fact sheets on benefits for Low Income Older and Disabled Persons. I didn't evan have the chance to go through my goodie bag but was pleasantly surprised how organized and low impact it was. There were several breaks, with refreshments and although I have dementia, it was not tiring or confusing for me.

We are so fortunate that Lancaster General Health is reaching out and leading the way in educating not only the care partner but us living this disease.

April 30, 2015

Don't stereotype me or underestimate me because I have Alzheimer's. I have drive and ambition to change the world of dementia and that is what I plan on doing. So many people see me as a helpless person that needs constant care, when they hear about my diagnosis of dementia. Boy are they surprised when I get started.

Next they wonder if I was diagnosed properly because they see me as normal and able to finish my own sentences. At that point they are putty in my hands and I can begin to mold then into a person that understands my disease. I could explain all the hardship and frustrations I have, but will leave that up to others.

I want to tell them what they can do to make their own life more tolerable and of course, mine to. I don't want your money for research because my concerns are the here and present. I need to teach you how to help us regain our respect and dignity and give us a better quality of life. I want you to walk away not being afraid to talk to someone living with dementia.

April 28, 2015

When one candle burns out, anouther one lights. I believe it has to do with adapting to my new life. It is constantly changing and I have to also make changes in order to stay one step ahead of my disease. What works one day may not work the next so I can't afford to get frustrated, I need to make something else work.

It's part of not giving up or giving in to dementia. I fight the battle of changes every day of my life. I once got upset and frustrated with my inability to tie my own shoes but changed to wearing slip on shoes and got my life back on track.

To every problem there is a solution. It may take some ingenuity, but there is always a way to get around it. It is hard to find a solution to the memories I am losing, it is what it is but I will continue to build new ones and continue to skip through life.

April 27, 2015

So many things, I think, I would like to do but I can't. It isn't because I have Alzheimer's but because of my age and of course my financial stabilty. I can always do things I never did in my life like taste key lime pie or go cloths shopping but I want to do something that really gets my heart stomping.

I already stood before a group of people and spoke about dementia awareness and half of them had no interest in what I was saying, They were only there because they had to be or the hint of a free give away.

I get the most joy out of talking with people that share living with dementia. There is no right or wrong or there is never a need to pretend we have dementia. We don't debate anything because we all share the same symtoms. We don't have to agree to disagree because we all live the same life.

I really am living the life I want to and was meant to be. Helping other is a high that many people never experience

April 26, 2015

I'm lost, can you help me? If someone said that to you, would you help? If someone said the same thing to you without saying a word, would you help or even realize they are reaching out to you? Thousands of people diagnosised with some form of dementia are saying that without the ability to put it into words.

They may be afraid of you finding out they have dementia or they advanced to the point where they no longer have the ability to cry for help. Observation is the best way to see if someone needs your help, you have to look for the signs. They are there if you know what to look for.

I can tell someone may need help by watching their body language while walking down the street. Their eyes are the clue that maybe they just need a friendly voice to let them know they are not alone. It doesn't take much to get United Against Dementia, just a willingness to help those that are lost.

April 25, 2015

Wouldn't it be great to live in a dementia friendly community? I'm not talking about a handicap accessable community but a dementia friendly community. One where we could walk the streets and look into the shop windows without getting lost or hurt.

A place where we could sit on a bench and maybe spin a tail or two. We are not being rushed to get someplace else and everyone knows we have dementia and make considerations for us. We never had to carry money or figure out change because everything would be billed to us.

There would be no traffic to blow the horns at us because we are moving to slow or the need to ask for directions because no matter where we walked, we always would end up at a central point. Sounds to good to be true but I will bet you down the road, there will be a dementia friendly community somewhere. I can always hope and dream.

April 24, 2015

I pray I achieve serenity, peace and happiness before my candle burns out. I know I will because I believe I already have. I know the things I can change and recognize the things I can not. I know my destiny and believe it can not be changed.

The end result will not change but how I get there is under my control. I forgave those that hurt me so I could find my peace and happiness. I accept I will have bad days but also learn ways to avoid them. I try to stay positive and avoid those that are not.

My serenity comes from being able to give back. I no longer have the need to think about myself but only of helping others. I can live with Alzheimer's and achieve serenity, peace and happiness because it is up to me.

April 23, 2015

If you are talking to someone with dementia and see a sparkle in their eyes, you have interned into their world and made a connection with them. Now you must set your pace with theirs and take it slow and easy. Don't force the conversation but just let it flow naturally.

Some of the best conversations are held without a word being said, It is the connection that you have made that is more important then what you say. I talk to many people that like to hold my hand and just feel the love we are exchanging. The sense of touch allows magic to happen if the person is comfortable with a hug or holding their hand.

Learn how to read someone's eyes and that will tell you more then a thousand spoken work. You will sense so many different feelings because you are with them in their world. You may feel their sorrow or being lost but the best feeling is when they are glad to see you.

April 22, 2015

It is so easy for me to get sidetracked. I have a blog to write, a website that I'm updating and several support groups I'm involved in and then the sun comes out and all that work gets put on the back burner and I go outside and sit on my bench.

Even though I have dementia, I can still call these my golden years. I paid my dues to the work force and I'm entitled to get lazy. I no longer need to be in a constant state of busyness and forever exercising my brain. I can now learn the different birds that visit my feeders or watch that darn squirrel eating all my bird seed.

What doesn't get done today, maybe I'll try to do tomorrow. People have the notion that someone with dementia needs to be constantly on the go but that is the furthermost from the truth. We do need to stay active both socially and mentally but there are times I need to be alone and just wander in my thoughts.

I think about the future and what lies ahead. I'm not worried about it because it is what it is, but then is when I face my fears and internally cry if I need to. I can break down without worrying anybody and keep me self respect. It reminds me that I control my destiny.

April 22, 2015

We complain about the littlest of things not realizing it could be a lot worst. Some can cuss like a sailor and others take it in stride. It amazes me how some people just go with the flow and others bang their head into the wall.

I believe over time you get used to the bumps in the road and just take them for granted. Speaking for myself, there were things in my life that sent up a red flag and set me off on a tangent but now for some reason I just shrug them off.

Maybe I'm just tired of reacting to things I have no control over or the message, “don't sweat the small things” is finally sinking in. Regardless the bumps are smoothing out and living with Alzheimer's is getting easier.

April 21, 2015

My life is like the weather, I can have a violent storm one day and the next, a calm sunny day. Last night we had some severe storms pass over and today is sunny with a beautiful clear blue sky. Maybe like the weather, nature is cleansing my body of unwanted things, It seems to me that I have a string of good days and then a bad day slips in reminding me that I am taking on more then I can handle. I am forced to slow down and relax then the sun returns once again. I call this my cycle of life and it's something I can not change.

I have to keep busy, I have work to be done, but sometimes my body and my brain is no longer in sync and something has to give. If I could find a schedule to follow my dream and not overload my system, I think I would be a happy camper and have less bad days.

I will deal with the bad days because the good days are really good. You can't beat sitting on your favorite bench with the warm sun beating down on you with birds chirping in the background. This is when I find my true happiness.

April 20, 2015

I wish the methods of meditation would be taught to everyone living with dementia. When you learn to meditate you free your mind of the stress you have and find a inner peace. It has a calming effect and helps you face the frustrations occuring in your life.

I am always looking for ways to control your dementia without the use of drugs. If we could be taught the ways of meditation early on in our disease, we could learn how to avoid the agitations that lead to the anger with our disease.

I use a technique called visualization where I mentally transport myself to a more calming place whenever I feel the stress of my life building up. We need to compile steps for someone living with dementia to learn how to meditate and help find their inner peace. Any takers interested?

April 19, 2015

It is hard not to become bitter with the amount of people that are turning a profit in the name of Alzheimer's research. They are mere panhandlers with absolutely no morels. They don't care about us living this disease but just stuffing their pockets with money.

Anything that is on the public domain of the internet is ripe for anyone to use as they want. They market that 100% of profit goes toward research but if you are a non-profit business, all the money goes back into your own pocket. Smart marketing and people fall for it everyday.

Several of the banners I designed pop up on Facebook and it is kind of flattering but the idiots use my profile picture along with my banner and that irratates me. I have a policy that anything I write may be shared as long as you don't find a way to lined your pocket with it.

April 18, 2015

It breaks my heart to see so many people walking around in their own little world and no one caring. So many people that you pass along the street has dementia and you do not know it. It is no fault of yours because we appear so normal to you.

It takes a strong person to raise dementia awareness because in order to talk the talk, you need to walk the walk. So many say the words without understanding what they are saying. Advocates come in all different flavors and I favor the ones that have boots on and dirt under their fingernails.

They are the ones that get down and dirty making changes in the quality of our life. Very seldom do you see them in the news or getting awards because they are so focus on what needs to be done that they don't need to be recognized.

We owe our gratitude to the men, women and children that are Standing Up and Speaking Out for a World Without Dementia.We are getting United Against Dementia and making changes.

April 17, 2015

What is a typical day like living with Alzheimer's. I have no two days that are alike but I do try to stay on a routine. Having a routine keeps me balanced but things come up that triggers some emotion that could put me into a tails spin of agitation.

I try to keep on a sleeping routine but that gets all messed up at times. The same is true with meals, we try to eat at the same general time everyday and I slow down in the evenings because I think my brain is telling me it is tired.

Now that I think about it, my typical day consists of me waking up in a fog in the morning and muddling through the rest of the day. Most of my day is spent raising dementia awareness and answering my emails. I get lost in my passion and there are days I have no idea what I did.

I watch very little TV because I can't follow the show, but I do spent a lot of time outdoors, when I can, and try to find ways to live better with my Alzheimer's. I give thanks for the things I am still able to do and find ways to enjoy my life.

April 17, 2015

What do you think people don’t understand about Alzheimer’s. I don't think people understand the emotions connected with any form of dementia. If I only had to worry about forgetting something, Alzheimer's would be a piece of cake for me.

The raw emotions of knowing that you are losing your loved ones and you identity breaks so many hearts. It is horrible to know I once did things that I can no longer do. I do not have the concentration to complete some of the simplest of task but have the ability to do things I never tried before.

People don't realize that my world is quite different then theirs. I believe what my brain tells me, right or wrong. I see things that you don't and I'm constantly walking in a fog. I believe the biggest thing that people do not understand about Alzheimer's is, you can still be happy.

April 17, 2015

I was asked, how is life living with Alzheimer's and that depends on the person. I compare it to wearing a winter jacket. I don't like it but I have to. You life is whatever you make it after you are diagnosed with dementia. There are medical restrictions that you can not change but you can lead a happy fruitful life, if you want to.

There are speed bumps along the road that tries to slow you down but you learn ways to avoid them or go around them. To live a happy life you need to accept your disease and convince yourself that there is life beyond your diagnosis.

My belief taught me that I am walking towards a better life and my reward is just ahead. I left my fears behind because I no longer have control over my life and turned it over to a higher power. I am constantly trying to learn new and exciting things and exercising my brain.

I wonder if my life would be as complete as it is today if I was never diagnosed with Alzheimer's and the answer is no because I found my purpose and the true meaning of life. I have a passion which carries me through all the rough spells I have. Alzheimer's has taught me that my life is not about me but helping others and I love it.

April 16, 2015

What have I learn today that I can pass on to others? I was reminded that no matter how bad I think my life is, there is someone that would gladly trade theirs for mine. Most people only scratch the surface of understanding what it is like living with dementia. There is so much yet to be learn about the behaviors of dementia.

I have been living with Alzheimer's for 11 years and spent so much time in the pits of dementia that I am only beginning to understand the unspoken words of dementia. I am learning how to look in the eyes of a person with dementia and feel what they feel.

Words do not need to be spoken but the eyes will let you know that you made a connection. Learning how to communicate and sharing a persons life is one of the hardest things to learn but the most rewarding.

April 16, 2015

Don't ever take for granted the things in life that make you truly happy for one day they may be gone. Walking in the fresh air and the feeling of being free are simple things that we all take for granted but may be taken from us by dementia.

Yesterday I was talking to a woman that was lost in her own little world but was searching for someone to talk to. I listen and left her say a lot not making any sense to me but her smile and laughter almost brought tears to my eyes. We said our goodbyes and I thanked the Lord for another blessed day.

April 15, 2015

Like the old Elton John song, what do I have to do to make me happy, you are realizing the seriousness of your dementia. You went through the stages of denial and the anger that goes with your diagnosis. You may not be at the point of acceptence of the changes that are occuring in your life and are wondering, why me.

Life beyond your diagnosis begins now. There is absolutly no reason why you can not be happy and enjoy your life. If you open your heart and accept the strength, you can do some amazing things with your life. Don't become a victum of your disease, use this strength to control your disease and face the day with a smile.

Life is hard with or without dementia and it is all up to you what you are going to do with the hand that life dealt you. You will find that a very strong person lives within your body and is waiting to get out.

April 14, 2015

Now may be a good time to give up those ridiculous feuds with family members. So many families no longer speak to each other and have no idea why. It just became a way of their life and times goes on. Now with your dementia advancing it may be good for you to forgive their actions and move on with your life. You may not be able to forget but you will not be carring that extra baggage around with you.

You may find that they don't want to forgive but that is their baggage to carry and not yours. I believe forgiveness is the path to inner peace and walking away imay be your answer. So many tears are shed trying to wash away the guilt when the solution is right before you.

Don't let the people you once loved die of loneliness, forgive and try to forget the past. Help them try to find their inner peace and maybe a little sunshine will also enter into your life.

April 13, 2015

If tomorrow never comes, did you say goodbye or I love you or did you decide to wait until later? Do you want to remember me the way I once was or maybe you are too busy to bother. I wonder how many never gave their loved one a hug and are now playing “I Wish I Would Have” game?

Abandonment is a feeling that most people with dementia feels sometimes during their lonely walk. You may not feel it because your life is so hectic and we pretend it doesn't bother us. Someone once told me that he/she won't remember anyway.

The irony is, you will have those memories until you are able to lose them. Pick up your phone or if you are able, visit your friend or relative that is in a care facility. Share your life with them and let them share theirs with you.

April 13, 2015

Today is distend to be a wonderful day. I am so happy to be alive on this warm sunny morning. I plan on spending as much time as I can soaking up the sunshine and singing with the birds. I still live with Alzheimer's but today it will not control my life. Today my life is mine and I will do whatever I want.

I love the days I can be defiant and tell my dementia where to go. I wish I had more days like today but I will take whatever I am given. It is a great feeling to be in control and allow myself to be happy. I wish more people would know how to do this but I can not teach you, you must learn on your own.

You need to learn how to tell yourself, NO MORE. No more hurt and pain or frustrations, not today. Then continue on and prove to yourself there is life beyond your diagnosis. I can be happy living with my disease. It's a start, try it.

April 12, 2015

Is happiness free or do you need to work towards it. I believe you need to want to be happy before you ever will be. So many want to dwell in their frustrations and don't even realize that they could be happy if they wanted to be. Maybe it is the only life they know and never knew what it meant to be truly happy.

We are all given the gift of happiness but it is up to us if we chose to use it or not. No on can force you to be happy, that task is left up to you. Countless times I am told, 'my life sucks' or 'this disease sucks' but what does that have to do with being happy. Maybe if you would not be so consumed in your frustrations, a little happiness would creep in.

The hard part is to want to be happy. If you want it bad enough, you will get it. It may mean letting go of some of the baggage you are carrying and learning to appreciate what you have and not what you lost. Life is full of choices and being happy is one of them.

April 11, 2015

I have decided if we are truly going to be United Against Dementia, I was going to open the memberships of all the Forget Me Not sister sites, all is welcome to join these sites by adding their name to the group they would like to join. This in no way changes the stringent security measure that were added to our dedicated groups, no one has access to those groups unless your are a member of that group. What you say in those groups can not be seen by others.

I do this for many reasons but mainly because we have groups that could benefit many. For instance our Memorial group is a special place to remember our loved ones that passed or our Pathway To Knowledge group that is loaded with resouces. If you would like to join any of these groups, click on the link and add your name.

Forget Me Not – Memory Cafe https://www.facebook.com/groups/1398777350367388/

Forget Me Not – Dementia Angles Fly Free https://www.facebook.com/groups/641793599210898/

Forget Me Not – Crafts and Gardening https://www.facebook.com/groups/465423030194317/

Forget Me Not – Fun Group https://www.facebook.com/groups/187847681338933/

Forget Me Not – Holidays https://www.facebook.com/groups/186650374850250/

Forget Me Not – Recipes https://www.facebook.com/groups/269410783188997/

Pathway To Knowledge https://www.facebook.com/groups/572307532828859/

April 11, 2015

There are many people that advocate for dementia awareness. Some advocate for research to find a cure and other advocate for care partners support. Others speak out for the physical needs and then there are those, like me, that speak out for the emotional needs of people living with dementia.

We enter into the dark side of dementia in order to explain what it is like living with this disease. The people I love live here and have no one to speak out in their behalf, they are unable