Memory Study

Write In With Your Real Life Alzheimer’s Story Or Experiences

We are looking for real life Alzheimer’s stories so if you have a story to tell or an experience to share, use the form below to write in and we’ll publish your story. Alternatively you can read real life stories already sent in to us, from below

Your real life stories

Mom’s Alzheimer’s Story

“My mom was diagnosed with AD just over 4 years ago now. At first myself and my family didn’t know what Alzheimer’s was really, other than it impaired memory. Pretty soon we learned all about this horrible disease, we had to!

“Mom has progressively gotten worse and the bad times are very bad but every now and again, hope remains with some positive moments where dear mom is her normal self. But we all recognize this is the exception to the rule.

“We have made sure she lives a good standard of life still and despite her illness, she’s a fighter, we all are now, so to everyone affected by AD – keep fighting.” – Mark B


My dad’s journey

“We didn’t realize something was wrong until dad began to have gait problems and hallucinations. He was diagnosed at stage 4. His decline was very rapid and was most likely the form of dementia known as Diffuse Lewy Bodies. Within the time frame of three years he changed very quickly.

“It seemed each week he was losing some skill or memory. His journey and the impact it had on our lives compelled me to write a book. I gathered as many experts as I could find and included the stories of three Alzheimer’s patients and their families. My book is entitled Into the Mist because that was how the disease made us feel.

“He was drifting into a mist and we could not follow. My dad’s journey began when he was 74 with a bright full life ahead of him. It ended when he was 77. Those three years were the most amazing, heartbreaking and lesson filled years of my life.” - Deborah U

Caring for my Husband who has AD

“I am 61 and a caregiver for my 79 year-old hubby who has been diagnosed with AD for 5 years now. Where do I start without writing a book? I first noticed symptoms when we got a new sailboat. Ken (my hubby) is a lifelong boater and all of sudden he didn’t know a line from a sheet or how to board and dock the boat.

“Also funny little things like how I’d ask him to take out the garbage would bring me quizzical looks. He would look at me funny and ask is that the brown can or the blue bins (recycling)?

“I finally got an internist to do a mini mental test, he did not do well. I had to convince Ken to go to a neurologist and it’s been down hill from there. At first he was depressed, I’d recommend in some cases that it’s not necessary to use the A word, just tell them they are getting old, memory fading , stuff like that.

“He started on Aricept and Zoloft. Tried Namenda, had bad results, took and still takes Seroquel when anger reared it’s ugly head. Took a while to get the dosage right (takes 150mg now).” – Elaine W

38 and diagnosed with Alzheimer’s…

“In August 2002, I was diagnosed with Early Onset Alzheimer’s Disease… I was only 38 years old! Organic Brain Disease was the diagnosis from the Mayo Clinic and the diagnosis was confirmed by an excellent Neurologist in my hometown who diagnosed me with Early Onset Alzheimers Disease etiology unknown, possible FTD.

“My family and I were blessed with the medications Exelona dn Namenda as they have given me a little more time and quality of life with them. I have taken this horrific diagnosis and turned it into the best that it can be if there is such as thing.

“I have written 2 books about the disease with one of those being a children’s book co-authored by my now 11 year old son. My husband and I have become very big advocates in speaking out against this disease through conferences and Public Policy and so many others experiences. There is so much more to tell but little time.” – Tracy M

Placing my mother into assisted living

“I just placed my mother into an assisted living facility. I could not care for her at home any longer. The disease progressed dramatically in six months. Her mental ability has decreased and she has no concept of time, dates, ages, etc. However, strangely enough, her memory has regressed to where she now can speak in Italian.

“Having been born in the USA, she was raised from the age of 3 to 13 in Italy by her grandparents. She will be 80 this August. She also does not remember having a daughter but does know she had 3 sons. In her world, her sons are school age children. When she has visitors she may remember them once she sees them, however, has virtually no recollection once they leave that they were even there.

“She is physically active which is a point of frustration for her. Activities are limited at the place she is staying. Its only been 2 weeks since she moved in. I thing I am expecting too much too soon.” – B. Stewart

Caring alone for my wife with very advanced Alzheimer’s

“I chose to care for my wife who has not spoken for three years and is incapable of any movement except to turn her head and use one hand. She’s had Alzheimer’s for about 11 years.

“I followed the accepted path of caring over the years. When I experienced her treatment in hospital and care home after she broke her arm in a fall. I made the decision to reject all outside help and go it alone.

“With pressure sores and reduced to 70lbs doctors gave her no chance of survival. Three years later she is 120lbs and I’m a fit 74 year old and enjoy caring for her. I know I am a one off and my story is so unusual I am at last ready to tell it.” – Patrick R

Still going strong – Wednesday, August 8, 2007 6:50 AM

“I’m Patrick R, just like to tell you we are still going strong as we enter our 13th year. Best of all please God we’ll celebrate 52yrs married and two teeks later she’ll be 73 and a day later I’ll be 76.

Though she’s not able to move, is stiff and falls to one side, I lift her into the car and take her shopping twice a week. Just got back from a 3 mile walk with her strapped legs and waist in w/chair.

Sure it’s hard work being up every day at 04.50hrs but a very rewarding experience learning to be a man in a woman’s world. All the housework, shopping, cooking, washing etc etc, more men should try it! It makes me appreciate what she’s done over 40yrs.

I’ve only had 12years of it! I’ve also managed to write a book in the past 18 months, due to be published soom.

Add to the story above. We’re still going strong and had our birthdays last week, wife Jean, 73yrs and I 76yrs. In addition we celebrated 52yrs married last month. Though she still can’t move (very rigid) nor speak she’s in good health.

As we enter the 13th year of her illness, I find I’m more content and happy with my life as a lone caregiver. It’s only four years ago I was being advised by her Doctor, not to sit holding her hand over night, as she was likley to pass away when i visited the bathroom. As I held her hand I told her it’s OK to let go and meet her folks, I’d be along later’. God willing I’m be back in an other two years to report we’re still here.” – Patrick R

My mom’s story – Sunday, September 2, 2007 3:57 PM

” We have known for over 12 years that Mum was slipping into Alzheimer’s; it was formally diagnosed about 9 years ago. As she was losing the self we all knew, she stumbled through very disturbing stages of her disease. She was, rightfully, angry, fearful, distrustful, and sad.

Two years ago, it was a family decision to place her in a convalescent residence near me. Following a few rocky weeks of adjustment (for us all),she settled in. The staff never hesitates to show her affection and reassurance, and encourage her sense of humor and love of dance.

During my several-times-a-week visits, I approach slowly, say “There’s my Mum,” give a small kiss on the face, then back away so she can see me. Next comes a hug, which by then she is ready to reciprocate. If the weather is nice, I get her out of the residence-issue wheelchair and we walk around the grounds to our favorite patio table and chairs under the trees.

If weather does not permit, we go to the “small dining room” where it is quiet. We sit holding hands as I remind her of all the fun we have had together and all the proofs of what a good mother she is (never mind the rough spots). In our imagination we walk on the beach again, feeling sand between our toes and listening to the waves.

She holds my hand as when I was small and frightened, and lets me know I am safe with her. There are so many stories we can relive together. Yes, I know she cannot really follow all I am saying, but she knows from my tone and body language we are enjoying this together. I tell her we have always been together, and we always will be together. I know she gets this, she always smiles. I look forward to our visits, still connecting with my mum, and inspiring her to not forget who she is. ” -Judy S.

DADS DEMENTIA -Wednesday, September 26, 2007 2:28 PM

“MY DADS DEMENTIA LAST YEAR. HE FORGETING WHERE I LIVED. I HAD TO TELL HIM DIRECTIONS TO MY HOUSE AND OTHER PLACES. IT WAS DEPRESSING WE HAD TO MOVE HIM TO ASSISTING LIVING APARTMENT. THAT DIDN’T TAKE LONG HE WENT IN THE HOSPITAL THEN A NURSING HOME IN DES MOINES,IOWA . THE ONE HE WAS IN WAS FILTHY. MY SISTER\’S MOVED THEM UP IN GRAND MARAIS, MINNESOTA, WHERE HE IS IN A NURSING HOME WHERE MY DAUGHER WORKS. I JUST SAW HIM LAST WEEK. I DON’T THINK HE REMEMBER ME THAT SUCKS. ” -Mary A.

mom has stage 7 AD – Saturday, October 20, 2007 10:48 PM

“My mom was diagnosed 2 years ago. She took Aircept ans Namenda for about a year but had to be taken off of both. She has experienced a very rapid decline in the past month going from stage 6 to stage 7. She now cannot walk and has to be fed. The only way she can sit up is strapped into a wheel chair for short periods of time.

I am trying to keep her at home which is a struggle since I work full-time. I have hired around the clock private sitters, and that is working for now. I have been truly blessed to find some very good and caring people to help. I have her name on a nursing home list, but I hope to avoid doing this as long as the sitters hold out. ” -Amy A.

Alzeheimer’s – Wednesday, December 26, 2007 9:36 AM “My Dad is 85 and has symptoms of dementia for over five years now. He was a class one auto mechanic and now does not even remember the slightest thing such as how to change oil. He was having trouble using tools and I discovered his problem when I asked him to hang a metal mail box for me.

He has no interest in anything, just sits in a chair and does nothing. He is grumpy and does not even enjoy seeing his children. Yesterday on Christmas he could not open his Christmas gifts nor even read the tags to see who they were from. He refuses to eat and it is a game now to try to trick him into eating. We have tried everything but now it is a power struggle for him and one struggle he is determined to win.

He never smiles or laughs and when I look at his face I do not see my Dad. Yesterday we discovered he was urinating in the kitchen garbage pail. We are determined to keep him at home as long as we can and it is hard to see him deteriorate so much. We love him very much and he has been a great father so we feel we want to do for him what we know he would do for us and did for us, care for us.

But it also is very frustrating for all of us especially for my mother who has lost her lifelong campanion. They will be married 60 years next May and I pray he still recognizes her at that time.

At times I know the meaning of the old time saying, a father or mother can care for several children but several children cannot care for their mother or father. ” -Marie S.

memory loss possibly due to guilt – Thursday, January 17, 2008 12:38 PM “recently I was at a party with a few friends of mine. One of the people there has always been known for his temper and inability to know when something he is saying or doing is wrong or inapropriate. He got very out of hand that night without haveing anything to drink.

On his way out of the house he decided to make a mess of the kitchen for no reason. I asked him why he did it and he has no memory of doing any of it. He hadn’t had anything to drink that night and remembers everything but trashing the kitchen. I’ve always wondered if he may be bypolar but now with whatever memory loss or blocked memories he has I’m wondering if there may be something else.

If you have any information that could possibly help him to prevent this from continueing to happen I would greatly appreciate anything you could give me. He is a very good friend of mine and it is very difficult watching him destroy his family and friendships. please if there is anything that may help let me know. ” -Jason M.

Causes – Wednesday, February 27, 2008 10:39 PM “I was wondering if anyone of the people in these stories has done away with all things that contain Aspertame. I have heard stories about people with MS who have recovered completely after removing this from their diet. Please look this up on the internet and think about giving it a try. I wish all of you the best, ” -LD.

My Gran is dying of Dementhia – Sunday, April 13, 2008 1:29 PM “This is my story of my gran, she was diagnosed 7 5 years ago with dimenthia after bumping her head on a billboard and it was fine at first but then when my grandad went away for two weeks i was left to handle her by my self it was hard work i couldnt leave her alone for two mins.

then it got so bad that he couldnt go out anymore so my mum and I or my auntie took it in turns on a friday night to look after her and my cousin and I took it in turn on a saturday morning to let him go shopping but like Patrick R my g-dad went alone refused help from people but he was just about to get help on a friday all of a suddon my gran came to my 18th birthday meal and had a great time but she was in restbite at the time and she went back 2 days later she fell and broke her hip …

so she got taken to hospital and she has been in ever since about 6 months now but she is dying now and she isnt drinking, eating just sleeping we got told 1 day left but that was 1 week ago so her heart is really strong. i dont want my gran to die but its the best for her. ” -Maxime Blake 18 years old.

Alzheimers – Saturday, November 29, 2008 10:38 PM

My Mom was diagnosed with Alzheimers about 6 months ago. We had a feeling something was going on but kept telling ourselves it was just dementia. Our family has never been good at talking about things and I\’m not even sure she knows she has this. My father cares for her and does everything. My sister and I try to go over once a week (they live about an hour and a half away)and give him a brake. My father is very protective and plans on handling this all on his own. My mom is very emotional and cries a lot because she thinks he\’s hiding her things stealing her money, cheating on her etc. It\’s heartbreaking and I have a hard time dealing with it. I feel like such a wimp, my father does this everyday. She tells me all these things and she feels so desperate. It feels like she wants me to take her away and take care of her which I can\’t but it just kills me. I\’m not sure she knows she has this, she\’s just always so upset and sad, I dread talking to her because I feel so helpless. She hardly eats and is so confused, it\’s a terrible disease, long and difficult for everyone. I have to pray for strengh. ” -Pam B.

Don’t give up –there’s always hope. – Friday, March 20, 2009 10:53 AM

My Nan was diagnosed with Alzheimer’s for nearly 10 years now. The strength, that my family have put together is incredible, my granddad has inspired me so much, he’s put his every last strength into caring for my Nan and if there was ever a role model that I would follow he would be it. I do remember days spent with my Nan, her pushing me on the swing and how much I miss it, but I always believe there’s hope. Soon she will be going in a care home and it’s made me realize how precious life is. I always believe there’s a hope for my Nan, she is so far on that she doesn’t know who anyone is anymore ,however when I see her she always gives me a smile that I know, she truly realizes that her granddaughter will always be there for her. She comes round often, every Sunday and will have a meal together, no matter what, believing that there’s nothing we cannot make it through, such as when she can’t wash her hair, I will help her and we do it together. Not all bad has come from my Nan’s disease, I have become closer to my granddad and I have learnt so much from what has happened, even through I’m the one who looking after her and not vice versa, I have enjoyed every moment of it and wouldn’t take a day back. My mum, is incredibly strong herself, she deals with things, that I never could and made me realize it just life and at the end of the day that’s how it is, I cant say in enough words how much I love her. When I’m older I want raise money for Alzheimer’s, I feel that everything we can do, counts. Last year I gave up chocolate and sweets for a month and raised over a hundred pounds and for the future I have bigger ambitions, sky diving! I’m know I’m only young, but age doesn’t matter to me, it’s the difference that counts we should all have ambitions and realize that nothing can prevent a goal if we try hard enough. ” -Lauren p.

Thanks to everyone who wrote in, our fingers are crossed for you and your loved ones.

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