Behind every Alzheimer’s patient, there’s a story to be told.
A story of a life with all its joys, triumphs and accomplishments.
Flo was my Nain (welsh for Gran). She looked after my sister and I in the holidays and was very active in our upbringing.
We never ever thought how we would one day have our roles reversed. For about 12 months we looked after her in her own home, as her mind deteriorated, and her memory shrank. In some respects we were lucky, she wasn’t aggressive or prone to wandering.
Slowly the familiar figure grew into someone who wasn’t our Nain anymore, but a little old lady. It was very hard at the time, particularly for my mum, working, running two homes and coping with ME. It got to a point where there was no option but for my Nain to go in a home, which we knew, had she been fully functional, she would not have wanted. It was an awful choice to make, however so was the constant nursing. My sister, age 17-18, was coming up to her A-levels, needed to focus on that, I got a permanent job and my mum was worked into the ground.
This disease is evil, it robs us of the people we once knew and loved. My Nain had a good sense of humour, limitless love and was an important part of our lives, I still miss her xxx Love you Nain xxx
Submitted by: Nia
17 caregivers and their loved ones from around the world.
This is a special video with very personal stories. Alzheimer’s/Dementia has no borders and we must always remember with every person living with dementia there is a story, there is a life full of families, friends, work, careers, activities, hobbies, social engagement, emotions and memories – an individual – a person.
Richard Everman and All who suffer from Alzheimer’s and related disorders
The title of our video (see above), which is the inspiration and work of fellow advocate, Bakus Saba, is “Alzheimer’s/Dementia Has No Borders”. Like all chronic illnesses, it is a disease that impacts the entire family, not just the unfortunate individual with the diagnosis. My late husband, Richard, and I are featured in the last frame of the video. We who long for an end to this cruel disease join our hearts and hands across all borders with the hope that our stories will raise awareness and promote advocacy for better care, prevention, and ultimately a cure for Alzheimer’s and related disorders.
Submitted by: Lynda Everman
Robert S. Acra and Thomas H. Acra
I am a nurse and saw my uncles struggled everyday with this disease. One uncle was able to remember me as his niece but couldn’t even retain the fact that my aunt passed away. We had to stop telling him that my aunt had passed before Thanksgiving of that year because each time he asked for her and he was told it was like suffering her loss all over again. My other uncle lived in the same nursing facility as his brother but didn’t remember his own wife or daughter. He couldn’t even remember his own brother that lived there with him at the nursing home.
Alzheimer’s is an unforgiving disease it doesn’t affect just the person with the disease but takes so much from the family.
Submitted by: Tammy Baggett
My brother and I used to call my dad “the map.” No matter where we were we could call dad and ask, “How do I get to…” My dad was a truck driver for thirty years and had traveled the country. He always had his maps handy. That was before the days of GPS. When he suddenly didn’t want to drive far, and started getting lost going to places he’d been going for years we knew there was a problem.
My dad was like Norm on cheers. He’d walk into the local pub and they all knew him. Now he won’t go. Not even to see his old friends. He’s scared he’ll get confused and only really feels comfortable with immediate family.
He’s still here with us, but we’re losing more of him day by day. The man he was is almost gone. I now live with my dad and take care of the house and finances. He still knows who we are, but his short term memory has gotten much worse over the past year. He no longer drives. That was a rough one. He still takes the garbage out and walks across the street every morning for his coffee and paper but soon he won’t even be able to do those simple activities.
The day I am dreading is fast approaching. The day he wakes up in the morning and doesn’t know who I am. I don’t know how I’ll handle that. I try not to think about it. Life is about the here and now, not the future that we can’t predict. Alzheimer’s makes that fact hit home.
Submitted by: Kelly Neal
B. Carl Snyder
My father grew up hard in the 20’s, and called himself a “Depression Boy.” Little did he know that the depression that would precede his Alzheimer”s would rob him of far more.
He fought it with every fiber he could muster, and refused to “Go Gently.” After losing his ability to verbalize, or so we thought, I brought him his favorite banana cream pie, hoping to elicit a smile. Upon seeing the slice, he said, “Sweetheart!” and when I asked if he would like some pie, he said, “Not at the moment,” as if it was just a normal dessert like so many others. How I cherish this last flash of recognition. He never spoke again.
I miss you Dad forever!
Submitted by: Suzanne Hertel
Lillian C. Watson
Mama LOVED to laugh. Even though the ravages of Alzheimer’s have created a “new normal” for her, she still manages to smile when she sees me, my sister or her great grandson. She is still in there, I can feel her.
Once, when I was a child, she pulled a practical joke on my father that still brings the joy of laughter to my heart. My father would come in from work daily, wash his hands, and sit at the table…with his work cap on. Night after night mama would ask him to remove his hat. Sometimes he would, sometimes he wouldn’t. On evening mama called my sister and me to her bedroom and gave us l a church hat to put on, she put on one too. We all returned to the dinner table with colorful fancy hats on and proceeded with dinner. Daddy looked up with a look of surprise at that sight. All of us began laughing hysterically. He never wore the cap to the dinner table again.
She is an intelligent, strong spirited woman who is leaving that legacy to her daughters and grandchildren. We still enjoy having her around and while she is exhibiting behavior of the final stages, we cherish each moment. Those moments erase all the challenging stages we have loved her through. When she moves to the other side of the veil, her Spirit will see us and say, “I Lived, I Loved and left a legacy of compassion and strength for my family. A job well done.” as she moves into the light.
Submitted by: Ellouise Patton
My husband of 59 years was gentle unto the end. He was a born again Christian, and prayed often in each day as he thought of a problem. His last words to me were: “Could I go home to Jesus?” I told him he could if he wanted to, and from then until his death in a week, he refused food or water. He wanted to go HOME! What a blessing the release of a suffering person is when they can pass in peace.
Submitted by: Leah Mattison
My mother struggled with Alzheimer’s for over 10 years. During that time, I don’t ever remember her uttering an angry or unkind word. When going on a trip with my brother and his family she remarked, “I don’t know where I am going but I am having a wonderful time.” She spent her last years as a resident of a memory unit in a skilled nursing facility and the staff frequently noted that she “brought joy to everyone on the unit.” From the time my mom was diagnosed and as her disease progressed , I wrote an annual letter to family and friends letting them know of her progress or decline. I made a conscious decision that even though my mother was slowly losing her memory, I wanted to make sure that those who loved her did not forget about her. People were so appreciative to be kept informed about my mom, and the feedback and support I received from loved ones was incredibly helpful throughout a difficult time.
Submitted by: Michele Komito
After 50 years of marriage it is hard to now be married to someone who does not even remember our 56 years together. Even though I still love him it is so hard to have a 4 year old to take care of at the age of 73. The memories of our long, eventful and caring life is gone and it seems as though I am married to a stranger. He is still a caring person and I have promised to love and take care of him until he dies. There will be no nursing home regardless of how hard it gets.
Alzheimer’s is the worst disease there is for everyone concerned. We must do something to help people in the future. My husband’s brain is to be donated to research to try to help all those that must follow in these horrible footsteps.
Submitted by: Lynn Sumpter
My uncle Leo was a war veteren from the Netherlands who spent years in concentration camps with the Nazis. Before his Alzheimer’s he would talk about the war a lot. But as his Alzheimer’s progressed he would think he was still back in the concentration camp with the Nazis and would scream at you thinking you were a German soldier. He would also get up at all hours of the morning dressed in his army uniform. And he would lock up the house like a fortress so no one could see in or get in. He would forget us at times, even my aunty. He will stare blankly at you for hours. One time he packed a bag with his razor and socks and walked out the door. He was picked up by a neighbour who found him in a daze. There is so much more that has happened. This is just to let people know how bad this disease is. Uncle Leo has been admitted to a nursing home now as he needs constant care and must be watched at all times as he will wander off.
Submitted by: Yvonne
My mother is fifty nine years old and was recently diagnosed with early onset Alzheimer’s. Eight Years ago I was worried enough about her short term memory to call her doctor myself against the wishes of my mother and my father saying she just “didn’t pay attention” here we are eight years later and she can’t even bathe herself. I’m fortunate she still remembers family and friends but she’s very distant alot of the time.
Its hard for my sister and I not even being thirty yet to be watching our mother slip away before our very eyes. With my brother dying years ago when I was in high school I feel the loss for him all over again wishing he was here to help us, I realize how selfish I sound I’m just having a very hard time with everything and my friends can’t relate, and for a very long period I fell like we were getting the run around from the doctors until our most recent neurologist finally did a PET scan and revealed what we all already new. This disease has no remorse my mother had such a hard beginning to life why couldn’t it be easy for her on this end.
Submitted by: Carla
Anne S. Garland
I am one of 3 caregiver’s to my Mom, who has been ravished by this disease. I no longer know this woman, nor she me.
There is no reasoning and no amount of re-assuring that consoles her. We all live in her perceived reality. This might very well be my future, as, this disease seems to affect more women than men. We are currently waiting for placement.
Submitted by: Anne Garland
Growing up, my grandma and I has a special bond that cannot be explained. I don’t know if it was because we both had a passion for baking, or because we were so similar…maybe both. Since I was young, I would alway bake with her, especially for holidays. As I grew older and went to college that stopped. However my last two years in college I decided to help her with Christmas cookies, since she was older. To this day, those last years I have cherished because soon those days of baking ended.
Soon she started to not act right, so we took her to the doctor and we would find out that she had alzhemiers. Within months she changed dramatically and the doctors said it was progressing rapidly. Currently she is in a home, which killed the family to do, but there we know she is safe. Her stage in the disease has slowed a bit. The disease has not taken over completely, for we can still see her personality. She has taken it upon herself to become the mother of the home and watches out for the residents. She to this day tries to show no weakness.
She was and is a amazing person.
This disease…I would never wish it upon my worst enemy. It destroys people we love, and unfortunately for us, it’s destroying our family. I hope for one day that this disease no longer exists and no one has to go through this ever.
Submitted by: Jackie
Greek and Mae Cunningham
Mae was mean-spirited towards my grandfather’s grandchildren, kind to her own. But as she descended into Alzheimer’s, she forgot to tell us that “those things are R’s, not yours.” She forgot to cut us down, long before she forgot we weren’t all her own. She forgot to be snippy in her commentary, long before she forgot how to speak. The last few times I saw awareness in her eyes, all she could do was look into my eyes, hold my hand, and squeeze it tightly as I helped her drink her protein drink, the only thing she could swallow. I am ashamed to admit that I was glad she’d gotten Alzheimer’s, because it stripped away all her baggage and all the reasons she couldn’t love me and my cousins, and all she was left with was a heart overwhelmed with love and appreciation for all that people were doing for her.
And then she lost that, too, and would cry when we “strangers,” including her husband of 35 years, my grandfather, would try to feed her or change her adult diapers. She was terrified of us and didn’t understand what we were doing to her.
My grandfather thanked G*D every day for her, not because he was pleased to watch his wife’s mind disappear, but because lifting her to put her into her chair, push her around, bathe her, was giving him back the strength of his youth. But I think that he would still have been even more grateful for her life and awareness than he was for the side benefit of her loss of mind.
Thank you, Tess, for bringing attention to bear on this disease. I hope that with your help, it will be defeated. I wish you much hatzlachah (success) in this and all your undertakings.
Submitted by: Judith