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Deciding to pay for care

(45 Posts)
Luckygirl Thu 19-Dec-19 09:30:24

www.bbc.co.uk/news/av/health-50843434/dementia-care-it-s-not-dementia-killing-me-it-s-exhaustion

I watched this item from BBC news channel and wondered what others thought about the decisions made by the carers - one in particular had decided not to have help with the care (or to consider nursing home care) as she has savings and would have to pay for it.

I am the first person to stand up and say the current situation for funding care is entirely iniquitous, but it is what it is at the present. The decision I made was that I am not fit (breakages, hopeless hip replacement, back problems, depression) to care for my OH and that he would not want me making myself ill in order to care for him.

I therefore made the decision to pay for care out of our savings (having wrung a pittance from SSD to add in) - I paid for carers to come in at home, then live-in carers and now for him to be at a good nursing home. All his savings are gone and I am starting on mine now.

The lady on the film was risking her health in the way that she was caring for him and I was concerned at the absence of suitable equipment to help her at home.

Given the current system, do you think it makes sense to not have help in when you have the money, just to retain your savings? My view was that these savings are there for a rainy day and this is very definitely it!

MissAdventure Thu 19-Dec-19 17:10:15

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

Sophrosyne Thu 19-Dec-19 17:39:50

thanks 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

Luckygirl Thu 19-Dec-19 18:07:22

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.

Luckygirl Thu 19-Dec-19 18:09:01

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.

jura2 Thu 19-Dec-19 18:10:36

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

winterwhite Thu 19-Dec-19 18:41:18

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?

Hetty58 Thu 19-Dec-19 18:53:57

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.

Hetty58 Thu 19-Dec-19 18:55:40

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

Daddima Thu 19-Dec-19 19:15:33

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.

Greeneyedgirl Thu 19-Dec-19 19:36:29

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.

Hetty58 Thu 19-Dec-19 20:08:05

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

M0nica Thu 19-Dec-19 20:17:20

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.

winterwhite Thu 19-Dec-19 21:36:45

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

Hetty58 Thu 19-Dec-19 22:37:45

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?

Luckygirl Thu 19-Dec-19 22:53:09

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.

M0nica Thu 19-Dec-19 23:58:32

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

Luckygirl Fri 20-Dec-19 09:38:28

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.

Luckygirl Fri 20-Dec-19 09:54:04

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.

BlueSky Fri 20-Dec-19 10:55:31

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. flowers