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For the last nine years I have been trying to get my best friend to be listened to by myself about having "essential tremors" taken seriously than 'just essential tremors!?' as of last year Alzheimer's dementia and Parkinson's are intact what I was frustrated and dreading because if someone had listened in the first place life would not be miserable now.

My mother’s dementia began with some forgetfulness, then she had delusions and hallucinations. She was mid-80s, my father 5 years older and he struggled to care for her. I lived 50 miles away. She became a compulsive walker and after being admitted to a care home she escaped one night. She died aged 88, not recognising us or speaking. Her sister then followed exactly the same progression time-wise so it appears genetic; certainly nothing to do with diet, as my father ate her cooking and at 101 his brain was as sharp as ever. I hope I take after him.

My husband aged 89 was diagnosed with dementia 3 years ago though the family were aware years before the formal diagnosis. He also has arrhythmia & both of us, in common with many others, hope that “the heart overtakes the brain” to spare him the indignities of the latter stages of dementia.

My Daughter with Down,syndrome was diagnosed at 38. We suspected at 32. During her younger years the lack of support was appalling. Now she is on direct payment which I administrate. I am 82 and disabled myself. We have one L/D Dementia nurse for the whole of our huge city. Vast majority of the care is given by me and careworkers I employ with her D.P. The pressure on carers is huge.

After retiring from her work as a doctor, our mum spent 12 years caring for our dad, also a doctor, who had MS, and her mum who was agoraphobic and then developed dementia. Dad and Nan died within a few months of each other and over the next few years it became clear that Mum’s memory and cognition were deteriorating, to the point where she was constantly losing her keys, cards, handbag etc, forgetting how to work the oven and shower or recognise when food had gone off and becoming unable to care for herself. Alzheimer’s was diagnosed.. My siblings and I arranged live-in care but after Mum was found in her nightdress in a neighbour’s garden at 3am, we realised she needed to be kept safe 24/7 and found a care home for her.
Because she’s in good physical health she gets no help with her care costs, which are £5400 per month. A friend’s mum who had dementia but lived elsewhere in the UK got all her 24-hour care at home paid for by the local health authority - because she also had a heart condition. But Mum’s dementia makes her just as vulnerable - why does the NHS not recognised Alzheimer’s as a debilitating illness and say sufferers only need ‘social care’? If left alone Mum would be as helpless as someone with a severe physical impairment - just as unable to look after herself and more likely to wander off and be in danger.
The staff at the home are friendly but she gets no exercise apart from when we take her out, and is given sweet treats so she has put weight on and is less mobile.
The real costs of accommodation and food for an elderly woman are a few hundred pounds a month and the staff are poorly paid so the fact businesses are making vast profits from Alzheimer’s is particularly galling.
Mum is paying for the home from her pension and the proceeds of the sale of the family home. Our Mum and Dad worked for the NHS all their lives, paid their taxes, brought up 6 children (she has 11 grandchildren whose names she often forgets) and were very involved in church and community activities and regular donors to lots of charities. Mum was a bright, busy, intelligent, active woman who contributed a great deal to many lives; Alzheimer’s has taken that away from her and she’s been left to pay for it. Scientific break-through aren’t going to come in time to improve her dementia but some means-tested state involvement in care, and controls over the businesses profiting from people’s misery, would at least take some pressure off families.

My Mum is 87. Diagnosed with Vascular Dementia 11 years ago. Also have Long Covid & other health issues. Surgery etc no help at all. Social Services, no help at all. Just left to do the best we can on our own basically

My father had vascular dementia and Mum cared for him.with him going to a centre twice a week and some respite care until he needed full time care and went into a care home.In the end he could not even recognise my mum but allways knew me which had us in tears every visit.other family members also supportd him going in to shave him and help feed him. he used to tell me if he was a dog they woukd not let him suffer like that bur i was never brave enough to end his suffering.So i support the bill going through Parliament..he ended up with pneumonia and we refused treatment just sat with him for 4 days till he passed peacefully.24 year's ago.My eldest sister also had vascular dementia and in the end refused food and water till she wasted away .with us again sitting with her for a week till she passed..the day after what would have been Dads 100th birthday.Another sister went from having episodes of blankness to altziemers in 1 year. Again starving herself and not taking water with a complete personality change she passed peacefully nearly 5 years ago.I know from experiencing that my paternal Grandma also had dementia being in a home for the last 3 years of her llife.also my Pap her husband Vascular Dementia.It also affected my paternal Gt.Grandmother.That is 4 generations of my family.so i support the Dementia charity have done Walk for Life and do Dementia lottery.i would hope everyone who can to get behind your charity to support you as it is very worrying to think we may have a familial gene in our family.

My sister-in-law died last year. She was in a care home which was some 100+ miles away from where we live. We visited her but these visits were very stressful. She never seemed settled in the home and constantly wanted to go home. She always recognised my husband but in the later stages couldn't understand who I was. She also became aggressive towards other residents. This was totally out of her character - she'd been a teacher to primary children for many years. Her true character was shown in the many,, many messages, from ex- pupils or parents of children she had taught, after her death.
It was tragic to see her with dementia. Her children also visited and tried using pictures and stories of her earlier life but to no avail.
Such a sorry way for a life to end.

My husband Terry was diagnosed with Alzheimer’s in September 2015, so we are 9 years down the line. Nothing has changed in those 9 years with help with care, and to give myself a break. My husband is 81 now I am 78 with lots of health issues myself.
Everything I have tried, I seem to come up against a brick wall.
Plenty of people to talk to, Carers centre,Alzheimer’s people, Age uk. But when you do get some hope of somewhere Terry can go for a little res bite, and some where for him to have a bit of company ,there is a long waiting list.
I have done all the courses to learn how to cope with this situation, but I’m tired, and get upset that there is nothing to help me or Terry.

My husband had Vascular Dementia, for which there was no treatment, and when it took over it would cause a blocked vein in his head.
When this happened he would be completely out of if for days at a time and I would have to feed, wash, dress, give him medication including Diabetes injection for days and when he came round he would have no memory of this. Could be for anything from 1 day to a week.
This lasted a few years up to his death.

3 members of my family had Alzheimer's/Dementia. My father passed in 2005 and whilst I didn't provide care for him, I was unable to work more than a few hours a week because of the daily phone calls spent chasing carers who did not arrive etc. A key co-ordinator is necessary for carers to avoid having to contact all involved in the care individually. I spent the rest of my working life living beneath the poverty line, which would not have happened if there had been a key co-ordinator.

My ex husband was a highly intelligent man who spent his last years in terror of everything which was heart breaking to watch. He lived with my eldest son. My grandaughter was one when he passed. She's now 5 and still cries sometimes because she can't see grandad.

My aunt who lived abroad, a compassionate ex-primary school teacher passed last year. I hadn't seen her for years so was spared the stress/deep sadness of watching her deterioration.

My eldest son is a successful, resilient businessman who now lives with buried fears that he too is at risk.

This is a terrifying disease that affects entire immediate and extended families. Politicians, beware, this could be you too in the near future!