Share your story

Late in 2019 early 2020 my loving wife Pat was diagnosed with dementia after having memory tests. We both accepted the problem and vowed to do everything we wanted, holidays, days out and enjoy life. Unfortunately that year COVID broke and we were both rated high risk, me because of cancer, goodbye to a good time. Then in 2021 we were told that Pat was now classed with Alzheimer's and things were going downhill rapidly, caring for her was taking more time, I noticed that one of her favourite pastimes was crosswords and she found it difficult to concentrate, she found it difficult to do the everyday activities. Our children who lived 150 miles away has always visited us regularly and they noticed a big change. Then Easter 2022 Alzheimer's was taking her, and the night of 19 April we went to bed, kissed her goodnight and said, I love you, and she said she loved me, then she went to sleep. Pat woke up just after midnight and said she needed the toilet, as I took her she just collapsed in my arms, unfortunately although the medics arrived very quick Alzheimer's had won, she was only 82 and we were married for sixty four years. I cannot describe the feelings one has with looking after someone you love with Alzheimer's but to me it was the worst part of our lives, watching someone go down hill so quickly and there's nothing you can do. If we don't do more to research this disease millions will die earlier than expected, the government needs to take note and do more to help. Patrick

My wonderful friend cared for his wife who had vascular dementia whilst suffering himself from colon cancer. Up until the day before he passed away he was still ordering her medication via his i-pad. When he passed her condition deteriorated rapidly and we did not realise how long he had been "propping her up" until she began ringing us throughout the day and night sometimes up to 40 times. To get her admitted into care was so difficult because he had carried that burden or I should say love for so long without help.

I worked in NHS elderly care for thirty years. Last year I was concerned because my memory was failing me every day, many times. I would also lose track of what I was about to say, lose stuff, find a word, and forget who did what to who in television dramas. I knew denial wouldn’t help and asked for a psychiatric assessment. I’ve been on medication for a year, and it is working. It really has helped. I feel grateful, though I know it is a temporary reprieve.
I want to do my best for my wife, for my Post Diagnosis Support Worker, and my friends. I hope only to be able not to disgrace myself if things get out of control, but I have been much reassured by the treatment and help I have received to date. Any stigma doesn’t bother me personally though I know it still exists, as do the negative stereotypes of dementia.

I don't sleep well at night as Rosemary my wife has dementia sometimes she doesn't sleep much getting up sitting on the edge of the bed saying she can't breathe very well. Always cold has a job to keep warm have to have the heating on when it's warm, can't leave her to do anything in the kitchen as she can't do the simplest little job anymore. If I didn't give her medication she would not take it. Everything is so hard for her to do short time memory completely gone remembers things in the past very well especially songs i worry that if anything happens to me she could not manage on her own. Not enough is being done for people with this illness to start with very helpful but once Rosemary was put on medication had know help since feels like you are just forgotten.

My daughter was diagnosed with alzheimers at the age of 50, she is 58 now and in the late stages of her illness. This horrible disease has impacted her 3 daughters and grandchildren, hers siblings and me and her Dad. It's just heartbreaking to see her whole body breaking up, her teeth are so sore, her skin covered in excess, she doesn,t know who we are and wish we could help her more, we all feel we could do more but don't know how. We all love her so much and know the end is going to be horrible.

my husbnd now 85 years was diagnosed with altzeimers last November, I cannot believe how swiftly he deteriated. I was his 24 hour carer and I am 82 so I started to be unable to cope as he was 24 hour need. I called for help and he i now in a care home, and I feel so guilty that I had to put him there, but realisticly unless you have been involved it is impossible to understand how dreadful life can be with such an appalling disease. |He was and is a very gentle man we have been married 59 years and he does still know me which is a bonus. But the care home is not very close in mileage and I can only visit when friends or daughter are free for two hours. Life has changed dramaticlly in a short space of time for our family, but I remember all the good times and try not to get upset seeing the manner of change to his life. It has all been a massive family shock as again until you experience Altzeimers, then it is not realised how horrendous the impact can be on a family. Yes we cn all read an imense screed about dementia but that does not prepare you for the reality . He would be lost in our house, not know where the toilet was or the kitchen or what bedroom we sleep in, at night he was up and restless five or six times, and that lack of sleep was why I called for help. our genertion are independant and we do not ask for help lightly, so all I can advise is if you do have a family member diagnosed be prepared for a shock as to how your loved one can change. Also it is very upsetting to see and experience all the awful chnges that come with the dignosis. It is not very nice when you are not recognised or your dad does not know who you are, we all have to learn to accept many many unusual reactions,

My poor Mum. Dad took care of her, so didn't know how bad it was until he died. I moved in with her after he died. My poor Dad, he never once complained, or said he was struggling. It's horrendous.

I AM VERY FORGETFUL. I forget daily items - keys, phone, etc. But my long term memory is much worse. I remember some things, but havve completley forgotten many others. I have an older brother with a better memory, and a much older friend who remembers details of our climbing walk in Nepal a hundred years ago. And I rember only what he tells me.

Our father was diagnosed with vascular dementia about 22 years ago. He is now 90. His personality is lovely, so we are very lucky in that sense. He does not remember much and has become incontinent. Our mother was his main carer, but was not able to cope as of 12 months ago. He is now in a caring and supportive residential home. Now Mom has delirium and cannot care for herself. She is currently in a rehabilitation unit and the next step will be to get her settled in the same home as Dad. We are lucky that they seem content, but it is such a shame to see them deteriorate in this way.