Care costs. Why should she pay?


Registered User
Jan 30, 2007
South Buckinghamshire
Mum went into a retirement home five months ago, 4 months after being diagnosed with Valcular Dementia resulting from a stroke in July 05.

After reading up a lot on Vascular dementia, it appears it is a terminal illness, with a life expectany of about 7 years after diagnosis.

Now, if she had any other illness which required full time care (cancer or something) I am sure she would be cared for under NHS.

We had to put mum in a retirement home, at a cost to her/us, because we got absolutely no support from doctors or social services. They talked the talk, but couldn't walk the walk, leaving mum extremely vulnerable to physical and further mental detioration in her own home.

We have now sold mum's property (she doesn't know). For years she joked that her property was our 'inheritence' and we should look after it by decorating, etc. She would be so upset if she knew that her (and dad's) years of hard work had come to nothing.

If she had never bought property and drank or gambled or spent her life living from day to day, her care would be paid for.

Doesn't seem right to me. If she were 30 years younger and diagnosed with a terminal illness, I am sure it would be a different situation.


Registered User
Mar 7, 2004
Please, please don't beat yourself up over this..................................#
Maybe, in time, this anomily will be sorted out.

Agree with you this is wrong, but I refuse to waste my precious emotions worrying about something that today I cannot change.

My dear Lionel, just 65, is in a care home. Dementia I can cope with, but lack of spatial awareness, and no mobility renders me helpless. So until his monies run out, we will pay. Thinking about it, I would rather he spent his money on himself than left it to his family.

If that sounds harsh, sorry. Yes I know we could draw comparasions with cancer sufferers, motor neurone, etc. but as I say, this is where I am at. So I look after Lionel.

I try to work with my local AD association, so campaign quietly in the background. Never give up, but channel the emotions. Hope this works for you.


Registered User
Feb 17, 2006
I know I was reading about attendances allowance and it said that if you have a terminal disease of 6 mouths or less your get your AA sooner.

I think that the whole issue with Cancer and dementia some people with terminal cancer are given a short time before they die and they do die in that time, someone with Dementia no matter what type , can be told I year 7 years, but can go on longer with good medication and care , also I think that’s why they do not have hospice for people with dementia .

I do love that saying
channel the emotions
its so true :)


Registered User
Aug 20, 2006
The biggest anomaly is that dementia isn't, or at least may not be, treated as an illness in care terms; if it were, then care would be paid for by the NHS.

As has been pointed out, if someone had the same symptoms of dementia but the cause was (say) cancer of the brain then there would be no arguments - the NHS would pay.

People with dementia , though, tend to fall under the "the NHS doesn't pay for the care component because being "elderly" or "frail" doesn't qualify as an "illness".

Yet Alzheimers and vascular dementia are obviously illnesses - not just "old age".

I think they get away with it because the public tend to think that they are just old age.


Registered User
Jan 30, 2007
South Buckinghamshire
Thanks for your replies.

I think 'they' get away with it because when you are effected by this terrible desease you do indeed have to 'channel your emotions'.

Any time spent lobbying your MP is better spent with your loved one.

Of course, every penny mum owns will go into making her life better. I just know though, if she was capable of knowing what her care was costing her, she would be doing the campaigning!:)

Eve G.

I'm in the exact same situation as a daughter, and it's no different in the US--Mom got no support from doctors, social workers, and of course insurance pays for nothing. We had to put her in an assisted-living home three years ago; goodness knows how long she'll live, but she only has enough money to last another two years. That's her life's savings: my sister and I only have enough money to keep her there a few months.

If she lives long enough, she'll have to go into a state-run nursing home, with no private-duty nurse to help out. Her furniture, her artwork, her cat, will all be taken from her. All because, in the US and the UK, no one cares. Maybe as the Baby-Boomers age, this will change, but it will be too late for our parents' generation.


Registered User
Nov 7, 2004
It's hard but do see your MP

Whilst it is important to spend as much time with your mum as possible it would also be nice to chase up your MP. If your mum is anything like my mum she did not live on less than she earned in order to subsidise the NHS. Mum has already spent all the money dad earned in his last 5 years of working on her health related care, so in fact dad was working for less than nothing (when you take into account he had already paid tax on the money he brought home).
It only takes an hour to go and actually see your MP and sit in front of him and tell him exactly what is going on. Go see your mum’s MP as well. Ask him what you should be doing to get the NHS care your mum thought she had paid for. If nothing else you will be helping the thousands of people who like you are saying “any time spent lobbying your MP is better spent with your loved one”. Ring your MP’s office for an appointment today. It’s better than sending a letter, though I always leave a summary of my concerns with my MP. Its also a free night out !!!


Registered User
Jul 19, 2005
It is mentioned that Dementia is elderly and frail but remember it is now affecting younger people. My husband was 49 when it started. The younger people get hit all ways too young to be ill so get hit by tax IB is taxable. I am expected to help pay for his care as well but i only work 7hrs a week and i take him with me. You get the benifits but they take it back to help pay for any care/ respite its a nightmare for families and now people in their 30's are being diagnoised they have children and have care costs as well. The whole system needs to be changed.

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