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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!

Dementia has made a terrible impact on my family. 5 years ago my wife was diagnosed with Dementia, to say it was a shock is an understatement, but in the last 5 years our lives have been turned upside down, my wife has had 3 strokes and is now bed bound she also has Diabeties and IBS. If that was not enough for her while she was in hospital we lost 2 of our wonderful daughters. We have been married 57 years and at the moment Denise can still remember a great deal but the events over the last few years are taking there toll. B T

For ten years I with help nursed my beloved husband who had vascular dementia. Eventually going into a home where in 2018 he died.

My wonderful Dad was diagnosed approximately 2016/17 with Alzheimer’s, As many do, he denied it, this caused arguments. When he accepted it there would be wonderful weeks, followed by ugly days. These nearly broke us all, my Dad wanted to die & for us to hurry that process, my Mum would hide in bed for days, not eating, drinking, taking her meds.
Eventually my brother & I broke & decided we needed both parents in respite care. Mum came home after a short break but Dad was too confused by now, so he stayed in the home. He was only in the home 8 weeks when he stopped eating & drinking. He ended up in hospital where a week later, with an infection. He died peacefully with my Mum, brother, myself & my husband with him.
My Dad worked hard all his life, his one aim was to leave his family financially stable, he would be horrified to know how much 8 weeks care home fees are for the sick. I’ve asked my MP to look into making a change. I’m looking at being tested to see if I might develop Alzheimer’s, we need life insurance to not be affected by this life saving choice.
To those of you affected by Alzheimer’s, for now, love is the answer, fight for their rights. It’s scary as #$@% for you & them. Look out for infections, infections are hidden because of the illness, they cause more confusion.
Love & respect to everyone suffering, you are not alone, reach out.

I had very little help when my wife started developing symptoms, being sent home from A&E with no offer of help or support. That is until 5 officials appeared at our gates ,unannounced, telling me they had come to take her away for Mental Health Assessment. I told them where to go. Next day they returned with police and she was driven off to nearest psychiatric unit 36 miles away. 15 months later she in in a care home, which I found having rejected those suggested by Social Services. I am contributing £26,000 a year out of our retirement income for her care. If she had a medical condition instead of Alzheimer’s State would meet cost of her care in full.