Deciding to pay for care

Luckygirl no words of wisdom or experience from me (so far) but I've been following your plight, such a worry for you and a grim reminder to most of us older couples.

And it is worth adding that when a spouse becomes so ill that they need NH care, it is a very difficult and emotional time and the hassle involved in all this financial stuff (leave alone house-moving) is often just too much for people. It sometimes feels quite cruel.

I am a surviving spouse - so far anyway!

M0nica - SSD is not allowed to regard the property as savings when calculating how much someone has to pay if a spouse is living there. BUT......and it is a big BUT, they can demand a top-up from the surviving spouse; and in most cases this applies, as SSDs do not contribute sufficient to pay for a decent NH (£573 round here - find me a nursing home that charges this!! - oh and they do not actually pay this as they demand a contribution from pensions).

Few people have the funds to sustain the level of top-up required, so they have to find a way of raising this money, and for most that involves selling the property and finding somewhere cheap.

Equity release is another option - SSD send a letter with the all the possible ways that you might raise the money for the "top-up" - lodgers, borrowing etc. They know full well that the top-ups are not within the budget of most people.

So the statement that surviving spouses do not have to sell their homes is a piece of window-dressing.

The house is not taken into account if there is a surviving spouse living there.

SSD have been very clear that if I run out of sources of money to pay the top-up my OH will be moved by them to a place of their choice. Over my dead body.

If the money runs out and I subsequently need care I will have to take whatever bog standard care I am given whether I like it or not. That is the risk I am taking.

OH talks of his plans to commit suicide. And I may finish up joining him. We are looking into a black hole.

What happens when the entire savings and house are gone and the remaining partner or spouse needs care? People really do underestimate the costs. Can anyone provide an estimate? Does the second person have to rely on family (who may well still be working) or LA help?

Yes, you can opt to decline certain treatments, Greeneyed, but for most people with dementia there’s no ‘treatment’ that would help. No one would want to cut off nursing care. Yes, I may have got the name wrong. We did ours last year, and mighty complicated it was.
I think re passing on savings it has to depend on the circs of younger family members. If I had children yet to get a foot on the housing ladder I’d probably think that sacrificing my savings in such circs was the last straw

I have always considered it quite reasonable for the value of an estate, including the house and all savings to be used for our care. Our DC have no divine right to inherit assets, particularly when many people are too poor to leave their children anything.

The luxury that having assets gives you is being in control of what care you get and where you get it. When my sister died suddenly, after the grief and the sorting of the estate, she died intestate, when the money was being sorted, our parents kept some of the estate for themselves (they were entitled to the lot), explaining that the money they kept would ensure that they could pay for any care they needed, and what a relief that was to them.

I believe that England, Scotland and Wales all have different systems. The three neighbouring Local Authorities here (North East London) have widely differing 'ceiling' budgets too (although, legally, ceiling budgets aren't allowed).

Many 'choosing' to self fund don't appreciate just how quickly their savings and house sale funds will deplete. A 'good' nursing home here costs at least £70,000 a year.

When enquiring about the £1,350 weekly charge breakdown, it soon became clear that most goes on staff costs and building /room rental. The budget for food was just £25 per week!

Care home residents are quite a small minority of the elderly population, though, partly because survival rates are not good (see the chart on page 10):

www.pssru.ac.uk/pub/3211.pdf

This is interesting too:

www.dc.nihr.ac.uk/themed-reviews/advancing-care-themed-review.pdf

Winterwhite You can make provision for refusing certain medical treatment that you may not want in the future if you lose capacity.
The Living Wills have been updated and are now called Advance Decision I think. In fact if anyone made a Living Will before 2007, it may no longer be valid, as the new forms have been updated.
A useful site is 'compassion dying.org' if anyone interested.

I agree Hetty58. The system is completely unfair at the moment as to the illnesses eligible for funding and those not. Even those who should be entitled to Continuing Health Care have a devil of a job trying to get it.

As far as I remember, when my wee auntie had to go into a care home she was ‘self funding’, as she had savings over £35,000. When that went down to £17,500 the local authority took over the payment ( though she got little, if any, state pension.)
This was in Scotland, it may be different elsewhere.

And the system is totally unfair - a complete lottery. Cancer care is free whereas dementia care isn't!

Luckygirl, you made the decision that is right for you. Many people don't have any choice at all. They may be far too frail themselves to manage the care needed. I don't think people should have to make these decisions, though. We should all pay a 'care tax' while we are working.

I think many carers are reluctant to eat into savings because they foresee their savings disappearing and then being left with nothing for their own last years.

A further tragedy is that in all probability many of those afflicted with dementia now said when young and fit that they would rather die than live in such a state. Why cannot 'living wills' reflect this in some way, so that when meaningful life has ceased peaceful death could follow quite soon. Who wouldn't want that for themselves?

just one of so many promises made by Johnson he has no intention whatsoever to honour.

Sophrosyne - thank you for that.

I signed the AgeUK campaign the other week. I am not holding my breath that it will make any difference.

Milly - what people with no savings get for free is certainly not the sort of care that any of us would wish for a loved one. And no-one gets it entirely free - whatever pensions they have are taken into account and they have to contribute the bulk of those - everyone does.

to Luckygirl and everyone currently dealing with the broken current care system for their loved ones.

Age UK are currently urging us to write to the PM to make care fair via this link:

campaigns.ageuk.org.uk/page/52970/petition/1?ea.tracking.id=TWshare

I hope when I need care that i'll not be bothered about what other people are getting and whether its fair.

It is very sad and does not seem at all fair that people are expected to sell homes to pay for care ...what happens to the survivor when all that money is gone ? are they at the mercy of social care funding (sorry, NON funding ?) if the have no money left ….£23,000 is too little to buy another home, even a mobile home ! there is often no family to help, who could, or WOULD come to that ! I was 'lucky' or unlucky in that I had an inheritance from a relative who died just when I had nearly used up all my savings (my husband NEVER saved in his life !) to pay for months in a care home costing £4,000 …as he could not get any help with costs. I shall be going to Dignitas if I have enough left ….I certainly won't have enough left to pay for a care home if I need one …..like most people, I worked and paid all my life until retirement and there is no one else who could contribute to my costs ...I agree we who can afford it should pay something, but if an illness is debilitating and long term surely it is a medical need as well as a social one ?! I have several friends in the US and believe me it is MUCH worse there.....lets hope Boris doesn't go in for selling the NHS to the Americans !

But Milly what have you saved for?
Most people would answer “a rainy day” , well in the words of the song , when you need residential or home based care, that rainy day is now.

NaughtyNanna - the local SSD deems my OH in need of nursing home care and are prepared to stump up £573 per week, which is their idea of what a nursing home costs!!!! From that they expect OH to pay about £260 a week from his pension; so what they actually contribute is £313 per week..

The actual cost of the home is £1250 per week, so we have to pay is £930 odd. Some of this comes from my OH's pension; and the rest of the "top-up" is from my pension and my savings.

I pay this because I am unable to care for him myself and because I refuse for him to spend the end stage of his life on a dump.

But that is a better option than trying to care for him myself and finishing up with two sick people for our children to deal with.

Watching the woman on the clip and seeing the stress she is under made me wonder why she has dug her heels in about not using their savings. I felt that this was a bad decision. I know the system is iniquitous but it is what it is; and that poor lady is going to be ill very soon, just for the sake of keeping her savings. I regard our savings (although OH's is all gone now on care) as being there to make our lives easier - if he had not become ill, we would have gone on lovely holidays; but he is ill, so it pays for his care - for a while! House going on market after Christmas.

But it does seem very unfair. Those of us who have carefully saved have to pay for our Carers and those of us who have not bothered get it free.

Jillybird- you must get professional help to clarify the situations asap- or talk to an adivser at Age Concern asap.

Lucky, this is so hard for you. I am sure it is of no relief to you, but the situation is the same in Switzerland - in some C/Kantons- the children become responsible for paying for care home when parents' money runs out. Both in UK with my MIL, ad then my parents in CH- there was very little left of their savings by the time of their demise.

Thinking of you often btw, hugs jura.

Message withdrawn at poster's request.