Paying for care - long, sorry

[Pippaandpolly]

I'm aware that this question probably needs specialist advice, but I'm hoping for some initial thoughts on behalf of my mother in law.

She has advanced kidney disease - goes to hospital every other day for dialysis, doubly incontinent, can't stand up or walk by herself, can't shop, wash herself, cook, clean etc - basically she is totally dependent on other people. She currently has a carer go in once a day in order to get her up, wash and feed her and do laundry etc, and family and friends go in during the afternoons and evenings as she needs help pretty much all the time.

DH is in the process of talking to social services to see whether she can have a carer go in more often - we reckon 4 times a day would be necessary in order for her to have any quality of life. We don't know whether they will provide this or not, and if not, how she will pay for it herself.

However, we know another option is to go to a care home with nursing facilities, and she's quite keen on this option. The problem is that our initial research shows the cost is approx £25k per year in her area, and she is not eligible for the state to pay as she owns 3 flats. All 3 have mortgages; she lives in one and the other two are rented out. She doesn't have savings as everything has gone over the last 7 years that she's been ill.

She would need to sell the flats in order to pay for the care home, but each flat is only worth about £60k, and once the mortgages are paid off she would be left with approx £20k total profit. This isn't enough to pay for one year in a care home, or for much more than a year of regular carers coming to her own home (particularly as she obviously wouldn't be able to sell the flat she lives in), and even if she could get into a care home for a year, when the money ran out she'd then be reliant on the state paying for her and we understand there would be no guarantee she'd be able to stay in the same place, which could be distressing for her and would leave her penniless and with an uncertain future.

We don't know what to advise her to do. Social services are being very slow in answering our questions, and every day that passes she inevitably has another few hours of sitting in her own mess, hungry and lonely. It's heartbreaking. She lives on the other side of the country to us and we go every weekend but both work full time and would have to quit work to go and live with her. She can't come and live with us, partly because she doesn't want to leave the town she's lived in for 40 years and partly because we live in a rented flat on the 3rd floor of a block with no lift. We can't afford to move.

If anyone has any advice, or suggestions of where to go for advice, we'd be really grateful. It's such an awful situation. She's only 56 and my 85 year old grandparents are in far, far better shape than her.

(N.b, we don't want to ask the hospital for advice; the last time we spoke to them about it a nurse suggested she should consider stopping dialysis (to save money?! was the implication). She'd live about a week, maybe 10 days, if she did this. It's not an appropriate option and she's not ready to die.)

I am no expert - and you do need an expert here - but yr MIL may be able to get her care home fees paid from the off if she is that physically ill. (Social services tend only to refuse dementia cases because, ahem, dementia is not an illness.)

Age UK are experts and have a helpline - do not rely on social services giving you an honest answer about funding, by the way.

To be quite honest, I don't think you can help people in homes being moved if they have to be - my grandparents were moved and they both paid their own fees. If you are worried about the possibility of moving yr MIL because she is having to go from private payer to state-funded patient, don't be as worried as all that; most care homes will be flexible for patients who are already there.

Incidentally, £25k a year is a very low fee for full care - it's at least £50k round here (altho I am in S England.)

I would do two things; talk to Age UK about the funding of the care home, and, more importantly, start researching really good care homes in the area MIL wants to live. Check out the official listings at caredirectory.cqc.org.uk. - but most of all you need to look inside the place - and smell it.

If she's only 56 geriatric care wont really be suitable.
Is she terminally ill and/or on the transplant waiting list? The 'best' options will depend on how long she is likely to live for, in her current condition.

It sounds like SW are totally failing her. Make lots of noise and complain to them. DEMAND more frequent care. Is she getting IB/ESA/DLA? If not she could use this to pay for care in the meantime.

Sorry to hear you are going through this.

Thank you both for replying so quickly - we need to do some more research and that caredirectory site looks really useful. darlene what's IB/ESA? I know she gets disability living allowance.

I think the saddest thing is that realistically she could go on living for another 10 years on dialysis if she wanted to - or she could stop now and die. She's basically in the position of deciding when/whether she wants to die. She's so sad.

incapacity benefit which has been replaced for new applicants by employment support allowance

Thanks - will check.

Have a look at Age UK (Age concern as was). They have the most informative and easy to read fact sheets about funding care; am currently using them to pick through the maze with my dfil.

Is there not a British Kidney Assocaition or something like that who might be able to advise If you lived near her you could claim Carer's allowance and maybe Attendance Allowance (not sure if latter stillexists) Go on DWP website for more info on benefits What about having carer's in her own home : they do everything now from peronal care to meals on wheels

I am a care manager and know a bit about funding. If your mother's total capital is less than £23,250 she will qualify for some financial help with either care at home or care home fees. The value of her own home would not be taken into account for care at home, but it would be for a place in a care home. I would suggest you speak to your local council Social Services "Adult Help Line" for detailed infirmation about charges in your area. Most people prefer to stay at home these days, and it is less expensive too.

The care home you mention sounds very inexpensive- are you sure it is Nursing and not residential?

4 visits a day from home care staff sounds about what your mother needs from the information you have provided. Attendance allowance does still exist and she would certainly qualify for the lower level of £45+ at least.

Social Services will give you accurate information about charging levels, amount of fees etc. but obviously cannot help on how you can get best value etc. out of the system. Corygal - a very small proportion of seriously ill people in nursing homes get their fees paid in full if their life expectancy is short, butunless they fall into the specific criteria for this scheme the nature of the illness does not affect how uch they have to pay.

Under 66's cant get AA they can get DLA instead.

The 2 other properties she owns will put her over the capital limit for help.

Have you read up on care annuities? Basically, she would purchase one using a chunk of her capital but then her care needs are funded for the rest of her life. Of course it depends on how much capital she would have to use and how long she is expected to live to see whether it would be worthwhile, but it is another option.

Poor lady, it's so sad when someone is so ill.

Sorry to join this post late, but you MUST ( sorry to shout )ask the hospital to carry out a continuing health care eligibiity criteria check list.( google it)
Basically if she scores a certain number of Bs or As her case should be put forward to the local continuing health care team for an assessment ,If she is awarded CHC funding she will not be means teasted for care as it will be paid for by the NHS.
If she is at home the district nurses can initiate this process too, or ask her nurse specialist
In practice the NHS is very reluctant to draw attention to this stream of funding and staff are often not trained or aware of it.
(this info only relates to England I don't know about Wales or Scotland)

she sounds eligible for continuing care, in fact if a nursing home is being considered then the hospital have to assess her before discharge. If she qualifies for continuing care then she is funded fully by the NHS regardless of her income.
Its a complicated process which some PCT's make more arduous than others. It can be fast tracked in some circumstances. Good luck and stand firm.

Thank you all for your advice. Sadly she developed a rare condition due to having been on one type of dialysis for so long and very recently died. We're all in shock. The angry, irrational part of me is really fucked off that social services have got away with ignoring her now. Similarly her hospital care-ICU staff were amazing but she came across so many bloody minded people before that. Only a few days before she died (she'd been in hospital for a few weeks before she died) a nurse shouted at her when she asked for help going to the toilet, telling her to 'get up and walk'. We have seen the best and worst of the NHS over the past few weeks. Anyway, thank you for the advice and I'm only sad we didn't get her the comfort she deserved. At least she's not in pain now.

Pipandpolly- I am so sorry for your loss. What a horrible end to her life, poor woman.

Wishing you and your husband strength.