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Deciding to pay for care

(44 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!

Jane10 Thu 19-Dec-19 09:36:16

I agree that you did absolutely what had to be done Luckygirl. It's a great pity that your DH's plight was not better understood by statutory organisations who should have offered more.
I totally agree re the rainy day use for savings and we're pretty much resigned to having to use ours for just such a reason but, one never knows what's round the corner. Most likely we might not have enough and would just have to trust to providence. Depressing thought. No easy answers.

Septimia Thu 19-Dec-19 09:40:59

Obviously it's an individual decision, but I agree with you Luckygirl. If you need help, even if you have to pay for it, then you should have it. It's no good soldiering on until your own health is so poor that you can't cope at all.

When my FiL had dementia his savings were such that he had to pay for help to come in. Eventually we reached the stage where we were considering a nursing home and we knew that he'd have to pay, at least to start with, and that we might have to supplement later. As it happened, he was taken ill and died so we didn't reach the nursing home stage. It was clear to us all (he had 3 children) that if his savings and house had to go towards his care, that's what had to happen.

MissAdventure Thu 19-Dec-19 09:43:57

I would pay for care, and sell my home to do so if I had to.

Luckygirl Thu 19-Dec-19 10:07:39

Indeed - my children are absolutely clear that they would rather see their Dad properly cared for and their Mum not put at risk, rather than worry about their legacy (or absence thereof).

Granny23 Thu 19-Dec-19 10:20:09

We are paying for DH's care. Myself + DDs are well aware that we will pay until our savings are gone and in a year or so the Council will take over paying. There was no option as I could no longer care for DH myself, suffering complete exhaustion = carer breakdown. The worst aspect of this was that it took 6months + from the decision that he needed to be in a care home, until he got a place there, by which time I was like a walking zombie.

Whether he lives long (and he is physically fit) or dies before me, I will spend the rest of my life qualifying for pension Credit, instead of having the 'comfortable retirement we had planned. It is so unfair.

Carolpaint Thu 19-Dec-19 10:34:03

My mother paid for her carers until it is deemed terminal then there was no charge. My understanding is that dementia is terminal, it may be worth exploring with a Welfare Rights Advisor all the entitlements. Payment has to be done by someone by the state via taxation etc?

dragonfly46 Thu 19-Dec-19 10:41:00

Definitely I would pay for care.
It is not only better for the carer's health but much better for the patient.
My dad asked me to find somewhere for them both to go as they were not managing. I had done my best with night time visits to pick them up etc but he preferred to be looked after by 'professionals'.
My mum is still in the home and being cared for very well although her savings are twindling, as they had to sell their bungalow. She doesn't know me any more but she is happy and safe.

craftyone Thu 19-Dec-19 10:41:53

I would pay for care, to get my choice of care. I have an LPA in place now and if it takes every last penny, so be it. My money,my choice

westerlywind Thu 19-Dec-19 10:42:52

I was a carer for many years for my parents. I did not have any help because my parents who had capacity did not want anyone other than family. Family meant me as other relatives vanished!
I had fallen apart emotionally. I was exhausted. I had one holiday in 12 years. Social Services were a joke. Ironically they can not even see how stupid they have been. Hospitals were determined to Discharge without thinking of me the carer. I am tiny and the caree was large! They could not even see that and lives depend on these people!
Virtually no money was spent on help in caring. Parents have passed now and I am grateful that I am well provided for but I am now permanently disabled. There is no cure for my condition and the situation will worsen in coming years. As ever, all the other relatives are nowhere to be seen.

Sys2ad2 Thu 19-Dec-19 10:51:36

What upsets me is that people who have not worked and lived off benefits get free care homes and support. But people who have worked and saved and bought their own home have to use savings and then sell their home. I think what should be done is build care homes that are large like hospitals. Then the employees could be state funded and employed like nurses and ancillary staff. They could be regulated and non profit making which is better for everyone. At the moment care homes are very expensive and probably make huge profits, there are many that have ill treated paying clients resulting in some cases of neglect and early demise.

NaughtyNanna Thu 19-Dec-19 10:56:15

@Luckygirl I'm sure you have taken advice but please make sure urgently that you are not paying from your own savings unnecessarily. The only time this can legally happen is if your OH is in a home that costs more than the social services rate. It seems they are paying a little for their "share" and you "only" have to top up, but they must pay their usual rate for nursing home care which is always several hundred pounds per week. Also, you should be regularly applying for reviews of his needs as he should now or soon qualify for NHS continuing care money towards the cost, or full NHS funded care. The home can arrange this if you ask them but make sure you are there when the assessments are done. Age UK do good factsheets on line and your local Age UK can advise.

4allweknow Thu 19-Dec-19 11:08:32

The whole care system is a mess. At the risk of being shot down, I cannot but help compare adult and child care. Both are human beings yet the elderly are expected to pay to have basic needs met. Do children? Why not? Surely we as a society should be treating all equally. If someone needs looking after regardless of age then they should have it on the same level playing field. Personally, with the current diabolical system I would buy care.

Grandmama Thu 19-Dec-19 11:09:11

I would sell my home to pay for my care if necessary. It would seem morally wrong for me to expect the state to pay for my care just so I can hand on my money and house to my children. It does seem unfair, though, that someone can blow all their income by their lifestyle and then have their care paid for by the state when someone who has been thrifty gets no state help when they need care. But - life's not fair!

Aepgirl Thu 19-Dec-19 11:29:07

It’s just wrong that those who save - often at the expense of fancy holidays or big cars - then don’t qualify for free care. When my mother was in a home and was self-funding, there was a married couple receiving completely free care, and the man had previously been a bookie. They had lived in council accommodation all their lives, and used to tell us of all the holidays they had taken over the years.

dragonfly46 Thu 19-Dec-19 11:37:50

I would rather pay for my own care as then I will have a choice of where I go.

Tangerine Thu 19-Dec-19 13:06:36

I agree with you.

Greeneyedgirl Thu 19-Dec-19 13:58:38

Sometimes it's just not straightforward.
My mother has home care, 2 carers x 4 times a day, but she really needs 24 hour care, but absolutely refuses to go into a home.
She is in a wheelchair and has some dementia, but is still considered to have mental competence to make some decisions, including where she lives.
She pays towards her care, but has few savings, and owns her own house, which I would be happy to see sold to pay for her care.
I live 16 miles away and have PoA for her. My brother, who has schizophrenia, goes in every day. I have 3 sisters who visit about every 3 months for the odd day.
My mother regularly presses her alarm and the paramedics have attended 25 times since April. Two or three times she has been taken to A&E with breathing difficulties, and discharged.
She constantly has urine and chest infections.
I feel completely worn down and helpless, guilty and depressed by the situation.

Elenkalubleton Thu 19-Dec-19 14:12:43

We are moving shortly to a retirement complex,my oh has early On set Altzimers.Hes on tablets and is much improved but not the man he was.We have to make a new Will,and have been advised when signing contract for new place,to make sure its for common tenancy (not joint).That way funds for his care can only come from his half of property.I hope this info helps all the Gransnetters out there,it’s given me some piece of mind.

Jillybird Thu 19-Dec-19 14:26:26

I feel for everyone. The film made me cry. I can't say what I'll do because I'm in a difficult situation. It's possible that I will get dementia but probable that my younger son would care for me if that's the case - he's already indicated that his garage is so large he can convert it into a "granny annexe". He's even added a shower room with toilet. My older son and daughter-in-law live only half an hour away and DiL is a nurse, so I'm hoping they would give younger son some repite if ever needed.
I cared for my mum entirely from 2000 to 2010 when she died. I was lucky in that she lived close by and was not so bad as the people in the video. She had carers come in mornings to dress her and give breakfast, I was working so went in every day after work until the evening carer came to put her to bed. So I didn't have the full burden to bear.
What I'm worried about is my "partner" who lives with me in my house. He's made over his house to his wife - they are still legally married. My house is in my name but he lives with me and pays rent. He's an alcoholic and showing clear signs of dementia so I'm starting to worry about how/where I stand.

jura2 Thu 19-Dec-19 14:32:29

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.

Milly Thu 19-Dec-19 14:53:39

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.

Luckygirl Thu 19-Dec-19 16:30:28

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.

MawB Thu 19-Dec-19 16:41:28

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.

ALANaV Thu 19-Dec-19 17:03:09

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 !