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  1. #16
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    Whilst I appreciate the 'Cost of Care' problem' is a big issue and it has to be funded somehow, it really gets me, that any person is effectively allowed to get themselves into debt by their living expenses exceeding their income! for a generation who didn't generally believe in the never-never.

    Anyone else 'living well beyond their means' would be prosecuted, but our relatives are allowed to do so merely because they scrimped and saved and did without for many, many years to be able to afford their own property. My mother (and father if he were still alive) would be horrified to think that my mother's 'outgoings' are 3 times her income!
    They never 'did' loans HP etc, apart from their mortagage and sacrificed much to get that property, including my mother never never getting back to her homeland for years and her father dying in the interim.

    My mother's NH owner freely admitted he couldn't continue without using self-funders to make up the shortfall. We are now paying 60% more than when my mother went into the Home 5 and a half years ago. Inflation hasn't risen by anything like that.

    My rant over.

  2. #17
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    I take your point.

    My Mum went without to bring up five children, as well as working part time.
    She nursed my Dad through cancer, over 30 years ago. Looked after both my maternal Nan and Grandad( she was their only child) who lived with us - they didn't go into care, and also her Great Aunt, who came to live in the family home. Never went into debt, and always lived within her very modest means. She has been fortunate until AD, never to need the NHS, she had most of us delivered in a small private nursing home where she worked part time as a nurse. Was on no medication at all until AD diagnosed almost three years ago, and even now only has to take Memantine and a preventative dose of anti-biotics daily. Mum is even now 'low maintenance' compared to others in the NH, hence being turned down for CHC earlier this year.

  3. #18
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    I also wish some official body would look into care home fees.

    Apart from being told to take in fruit for my Mum I was told they don't provide doorstops to prop the doors open, we would have to buy it ouselves at around £150 fitted.

    Since mum has been in there her toilet window has never opened. Mum has a colostomy and she is always very conscious about leaving smells. We already provide all our own air fresheners as they won't. I asked months ago whether they could open it but they say the key is lost and they don't want to pay out for a new window.

    I was speaking to a physio on the phone one day about returning items mum had used at home and she told me that the home should now provide any aids that Mum needs but the Zimmer frame they gave Mum looks like it came off a tip.

    Like someone else said earlier our care home owner has a top of the range brand new Range Rover and she parks it in such a way in the car park that it's difficult to get in and out.

    I realise for them it's a business and they have to make a profit but OMG they certainly cut corners. Week in week out all the residents get is budget orange squash (I've seen their Asda delivery) I gave Mum some black currant and apple on Saturday and she was like a child with a new toy!

  4. #19
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    Frustrated at my lack of agency both with regard to AD and the care sector as it currently operates in 'Rip off Britain' decided I needed to put up or shut up. Have written to my local elected politician, and another elected politician, next stop CQC, the only watchdog we have. Could I urge that others in the same situation do the same. We should not be content to accept the status quo. Dementia is a terminal illness and not a social care issue. Sufferers are marginalised, NHS don't have to deal with it except at the margins eg falls, infections etc and whilst it remains categorised as a social care issue then the relatives have to shoulder the full burden, stress and anxiety of that care.

  5. #20
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    Quote Originally Posted by Coulddobetter View Post
    Frustrated at my lack of agency both with regard to AD and the care sector as it currently operates in 'Rip off Britain' decided I needed to put up or shut up. Have written to my local elected politician, and another elected politician, next stop CQC, the only watchdog we have. Could I urge that others in the same situation do the same. We should not be content to accept the status quo. Dementia is a terminal illness and not a social care issue. Sufferers are marginalised, NHS don't have to deal with it except at the margins eg falls, infections etc and whilst it remains categorised as a social care issue then the relatives have to shoulder the full burden, stress and anxiety of that care.
    Good for you! Well done. I have written to THe Prime Minister and had a rapid reply to say they were passing it to another dept. If I don't hear from them in the next week she will be getting another letter. I am also seeing my local MP in Sept.

  6. #21
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    Hi Coulddobetter I wrote to Jeremy Hunt copied CRO Alzheimer's Society and Jonathan Ashworth in to tell me what other terminal illness is subjected to care costs. My husband is just entering the severe end of Alzheimer's having bee diagnosed 2.5 years ago. I get 2 hours support a week so save the country thousands by keeping him at home even through very difficult times yet then have the privilege of paying £1000 per week for respite. Please don't think we are rich, we worked very hard to provide decent pensions and to make some savings for our retirement but because of that I have to self fund. Now I truly don't object to contributing something but bear in mind when we first started working tax was 33% not 20% so we did already contribute but if my husband had any other kind of terminal illness his care would be state funded. His care is essential care not social care, when he is in respite he is confused and anxious so not a lot of social niceties for him. I think calling it social care gives a wrong impression about what that care is. Anyway, needless to say no response yet but I will chase it up this week until I get an answer. Perhaps we should have spent our money instead of saving and going without. It feels like we pay over and over again. Sorry rant over

  7. #22
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    A bit of a side issue, but I was disappointed that on the news last night, when they were talking about the increase in Care Homes in the next decade and estimated the average male needed around 2.4 years and a female 3 years. That is nowhere near realistic in my experience and I suspect for many people on here.

    My mother has needed care for the past 12/13 years and my in-laws both needed care for nearer 25 years as they both reached mid 90s. If they say we're going to live even longer care costs will be inevitably longer.

    With dementia, even in the very advanced stage such as my mother, care costs are astronomical and as pointed out one of the few terminal diseases whose costs are not covered completely by the NHS.

    With 5 and a half years in a NH already, costs of care are over £230 000 so far and of course costs increase each year, leaving out the cost before she went into the Home after I could no longer cope. My own loss of income during those years notwithstanding. yet the government are insisting everyone has enough savings for care costs in the future.

    We are the sandwich generation, who because of that, will have lower pensions and certainly no savings ourselves. It is impossible to save when one's income doesn't reach anywhere near the tax threshold. And of course any 'potential inhertance', which we might have hoped for, is being swallowed up in care costs.

    I know there is no economic answer, but I really do not think these 'reports' are aware of the impact of us being carers in our latter years on our inability to be able to pay our own in the future. It just makes me feel like giving up now.

  8. #23
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    Quote Originally Posted by lemonjuice View Post
    A bit of a side issue, but I was disappointed that on the news last night, when they were talking about the increase in Care Homes in the next decade and estimated the average male needed around 2.4 years and a female 3 years. That is nowhere near realistic in my experience and I suspect for many people on here.

    My mother has needed care for the past 12/13 years and my in-laws both needed care for nearer 25 years as they both reached mid 90s. If they say we're going to live even longer care costs will be inevitably longer.

    With dementia, even in the very advanced stage such as my mother, care costs are astronomical and as pointed out one of the few terminal diseases whose costs are not covered completely by the NHS.

    With 5 and a half years in a NH already, costs of care are over £230 000 so far and of course costs increase each year, leaving out the cost before she went into the Home after I could no longer cope. My own loss of income during those years notwithstanding. yet the government are insisting everyone has enough savings for care costs in the future.

    We are the sandwich generation, who because of that, will have lower pensions and certainly no savings ourselves. It is impossible to save when one's income doesn't reach anywhere near the tax threshold. And of course any 'potential inhertance', which we might have hoped for, is being swallowed up in care costs.

    I know there is no economic answer, but I really do not think these 'reports' are aware of the impact of us being carers in our latter years on our inability to be able to pay our own in the future. It just makes me feel like giving up now.
    I understand how you feel. I went down to part time working when my Dad died 10 years ago purely to help my Mum. Then about 6 years ago I gave up work altogether as she needed a lot of help, taking to appointments etc. I have regretted it to be honest because I missed work colleagues and using my brain. Being a carer is quite lonely and a bit depressing.

    I expected to get my pension at 60 and now here I am at 64 and stil not getting it.

  9. #24
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    Interesting piece in the Guardian today.

    'Will UK consumer law destroy the care home market'?

    Some preliminary findings of an investigation started last year by the Competitions and Market Authority, (CMA) included that there is compelling evidence that self funders pay about 43% more than those funded by LAs.



    Well worth a look.

    Have forgotten how to copy and paste a link!! Sorry.

  10. #25
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    If you're going through hell, keep going

  11. #26
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    Quote Originally Posted by Kevinl View Post

    Thank you.

    Have been on the CMA website and had a look at their report. Their investigation is still open and they invite relatives of 'consumers' of care services to comment on their experiences.

    Could all of us on TP who have 'issues' make our voices heard.

  12. #27
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    Quote Originally Posted by Coulddobetter View Post
    Thank you.

    Have been on the CMA website and had a look at their report. Their investigation is still open and they invite relatives of 'consumers' of care services to comment on their experiences.

    Could all of us on TP who have 'issues' make our voices heard.
    I can't find where to add my comments.

    I was saying to my niece today that in any other "business" you would have some comeback but not, it seems, with care homes.

    If you book a holiday and it's a disaster you can complain, if a garage doesn't fix your car right you can complain, if you buy something and it's faulty you can seek redress.

    My Mums care home has not stuck to any of its promises and within the first few months put up her fees by £50 a week which I thought was shocking.

    Who can I complain to because if I say anything to the home they just say we are free to go elsewhere.

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