This is My Story
Everyone has their own story to share when it comes to Alzheimer's Disease, Dementia, and Memory Loss.
​
These are our stories...
This is my story. Performing this piece resonates with me on so many levels as I watched my Nana, who I was very close with, suffer from Dementia. One day, she was sharp as a tack, the next moment, not knowing who or where she was. But music brought that light back in her eyes. When I visited her in the nursing home, if there was music playing in the social room, we made a point of taking her down to listen, and for those few moments when just the right song would play, she would be back. With one leg crossed over the other, her foot swaying to the beat, and a smile on her face, she would lightly clap her hands in her lap and mouth a few words here and there. But as soon as we would go back to her room, it was as if that moment never happened and she was gone. I recall one visit vividly when she was particularly sharp. It was as if she wasn't sick, and we talked for well over an hour. It was wonderful. When I came home to let my mom, her daughter, know of the visit, she said, "ah, I thought that was you who visited her." Puzzled by the response, she said, Nana told her a lovely young lady came to visit her, but she wasn't sure who it was. My heart sank. After I shook off the initial disappointment, I took away the thought that at least for that brief moment, we shared that beautiful moment in time.
​
- Kathy
Forgetfulness
The name of the author is the first to go, followed obediently by the title, the plot,
the heartbreaking conclusion, the entire novel, which suddenly becomes one you have never read, never even heard of.
As if, one by one, the memories you used to harbor, decided to retire to the southern hemisphere of the brain,
to a little fishing village, where there are no phones.
Long ago you kissed the names of the nine muses goodbye, and watched the quadratic equation pack it’s bag; and even now as you memorize the order of the planets, something else is slipping away . . .
a state flower, perhaps, the address of an uncle, the capital of Paraguay.
Whatever it is you are struggling to remember, it is not poised on the tip of your tongue,
or even lurking in some obscure corner of your spleen.
It has floated away, down a dark mythological river, whose name begins with an L as best you can recall; well on your way to oblivion where you will join those who have even forgotten how to swim, and how to ride a bicycle.
No wonder you rise in the middle of the night to look up the date of a famous battle in a book on war.
No wonder the moon in the window seems to have drifted out of a love poem you used to know by heart.
— Billy Collins
This is my story. This is my now, my daily life. There is little light and it’s hard to keep faith. As I write, my dad lay dying in the other room. It’s hard for all of us to face each day. We wake to move forward while he only falls behind and find him more in the dark every day. In what wake he has, he lives in delusion. He tells stories of people he has never met and has conversations with the shadows on the wall as if they are the light. He recognizes no music but tells of the choir of angels and conducts the music he alone hears. Hospice provides words of comfort and reassure us that this is normal. This is all of our new normal. I’ve heard a hundred stories of loved ones finding peace but here, now, there is none. We struggle to function. We are sad and tired and cannot see past the shadows of this moment. What is hardest is that he knows it is happening. In his moments of lucidity he is aware that every day he loses a little more. For him the faith is that it will end soon because the sadness is in the inability to recall the life once lived.
​
- Anonymous
This is My Story. My story started in 2015 when my 82 year old mom was institutionalized because being at home with my father was no longer safe for her due to Alzheimers. The family noticed signs prior to needing daily assistance and tried as long as possible to keep her home. It was very hard on the family to make that decision and once Mom was there, she went down hill over three years, beginning with her being self sufficient with memory issues to having to be fed, in a wheel chair, and non verbal. I was fortunate to visit her often but watched her slowly change and she died in 2018. At the same time my 60 year old sister was showing signs and retired early due to not being able to maintain her job of over 25 years due to this same disease. Her situation was devastating due to her being 60 years old. She declined quickly and was also institutionalized and died at the age of 62. Watching the changes from beginning to end in both my mom and sister was a sad road. Feeling very helpless many days but showing them love all days!!! Thank you for supporting such an important organization in hopes for a continued research and work for a cure!
​
— Pamela
​
This is My Story. The first inkling of my mom’s developing condition started one day when we went for a hike at the Nature Sanctuary where my parents were members. We had packed water and a snack and after walking for a little while, we came upon a bench and decided to stop for a rest. I took my water bottle out of my pack and looked over at my mom. She was staring at my water bottle as if she’d never seen one before. And when I took the cap off and began to take a drink, she said, “Oh, wow! That’s really neat. It has a cap.” It was very strange. As if she’d never seen a water bottle with a cap before. I remember saying, “Yeah, mom, it’s a water bottle. They all have caps on them. How else would you be able to take a drink of water?” But she still had this confused look on her face. I remember thinking, “O Lord, we’re clearly not in Kansas anymore.”
​
— Pam
This is My Story. Two of my grandparents, husband and wife, were diagnosed with dementia over a decade ago. Although I was young when my grandfather, a brilliant engineer, was diagnosed, I still remember him becoming so frustrated with himself that he couldn't remember all of the Yankees players. When the disease really started to hasten his decline, he reverted back to speaking in Polish, his first language, and my grandmother had to translate for him. As the years passed, he would have a glimmer of his memory, and he would remember who we were. My grandmother, who rarely remembered who I was after her diagnosis, would forget where she parked her car at the grocery store, and she even forgot where she lived on occasion. Although her memory deteriorated quickly, she reverted back to her "past life" and played the piano in the nursing home for the first time in almost sixty years. Unfortunately, these are the last memories that I have of my grandparents, and I wish I knew to cherish all of the beautiful moments I had with them when I was young. This is my story.
— Anonymous
In October 2020 my beloved mother was diagnosed with Alzheimer’s disease at the age of
71. While my family saw the diagnosis coming, hearing the words from our trusted physician
was devastating. It was a punch in the gut. Having worked in healthcare for many years I
knew what it meant, and I became angry. I saw my mother’s future and didn’t like it. I
decided to turn my anger into action.
We received my mom's diagnosis at the height of the pandemic. Nothing was open. We
turned to the internet and found the Alzheimer’s Association’s website and immediately had
everything we needed to learn about the disease, how to support my mom and how to
contact the 24/7 Hotline and our local chapter.
I refuse to sit back and let this disease take over without a fight. But I can’t do this alone.
I need you to join in this fight with my family. Please help so no family has to hear the
devastating words, “Your mother has Alzheimer’s disease” - ever again.
I'm leading the way to Alzheimer's first survivor by volunteering and participating in the Walk
to End Alzheimer. Currently, more than 5 million Americans have Alzheimer's disease
and that number is expected to grow to as many as 14 million by 2050. Our future is at risk.
I want to stand with you, in support of all those who face Alzheimer’s disease and other
dementia, so our neighbors, colleagues, friends and loved ones can access the critical
education, services, respite, and care that they need.