Share your story

My wife has early onset Alzheimer’s. Forgetful , spelling becoming “odd” we sought a diagnosis. Nearly two years later we had the above diagnosis. Prescribed Donepezil (which may or may not slow the disease - no way of telling ), a three month check on the meds and then goodbye and good luck . No support, nothing . Every day more things are forgot, dependency increases , remote controls , heating , shopping , dressing, money, understanding of anything. Now I cannot leave her for for than a few hours , I walk her across roads in case she fails to look . I am a 24 x 7 carer now or my wife . NHS or other support ZERO. I often wonder whether Cancer is a better disease to have - at least there is hope and NHS support . I try and make every day happy

My mother once said my Dad was a bit woolly and didn’t retain; I believe I am on this path. Although I try to keep my mind as active as possible, writing short stories, I sometimes can’t come up with a word I am looking for and can recognise and old face on TV, but not remember their name. After joining a local Art Group a few years ago, I had to write down the names of others to remember them. Even minor memory loss can be a worry, even though it might not be dementia on the scale we talk about. When the day arrives I forget my credit card pins, I might then go for assessment. I feel I’m in a good life at the moment having joined a local bowling club, but I don’t always feel as sharp as I would like to be; I can’t read a whole book, only bits at a time. Hope this helps.

My poor late mother died in September 2018 after suffering from dementia and diabetes.
After she fell and broke her hip we could no longer leave her on her own in her home which she had shared with my late father for 60 years. She never walked again so I had to put her in a nursing home close to where we lived so that I could visit her several times a week. She was unable to speak and this made her life and mine unbearable. She also had needle phobia so her twice a day insulin injections and blood tests several times a day were terrifying for her as she thought that the staff and even myself were going to kill her but she could only cry out every time she saw a needle. The staff were absolutely wonderful but did not know the first thing about diabetes and made several bad mistakes which led to her being taken to hospital in an ambulance and every time I had to go and literally get her discharged back to the nursing home.
I cannot tell you how cruel her life became and I had to watch all this and suffer just as she did. Finally she developed sepsis and when she was finally taken to hospital again, I was told that she could die within a few days. I vowed that she would never die alone in a hospital bed so I asked for her to be taken back to the nursing home where she could die in her own bed and her own private room and I could care for her.
She lasted over a month without any food or water apart from aa few drops passed over her lips by myself or one of the staff. It was horrendous and there are no words to describe how unbearable it all was.
Finally at last she died at 2.45 pm on September 28th surrounded by myself, my partner and some of the staff and it was a blessed relief for everyone.
I have now made a living will stating that I want to die at home or in a hospice because the treatment she endured at the local hospital was horrific and I will not describe it but I was there and it marked me for as long as I live.
Rest in peace my beloved Mam, your suffering is over.
With all my love,
Your daughter Teresa.