MIL care costs

[NoHaudinMaWheest]

As the title says this is about paying care costs for my MIL.

I feel the need to give a fair bit of background in order for the situation to be understood and also to get things clear in my own mind. That will make it quite long so advance warning if you are short of time or capacity.

MIL is now 90. She was widowed 30+ years ago and has lived alone in her own owned home since. Until she was 79 she was pretty independent, driving, doing voluntary work, visiting friends etc.
She then had to have a fairly minor operation to remove a melanoma from her leg. She was assured that it was the type that doesn't spread systematically and that it had all been removed so once her leg had healed she could go back to normal. However she developed a severe reactive depression and stopped eating and drinking and caring for herself. She ended up very ill in hospital. After a period in acute and rehab hospitals she was discharged home, physically fine but still very depressed.
When FIL died she had taken out an insurance policy which would provide care at home and so that was used to hire a live-in carer to persuade her to eat, drink, wash etc. She had quite a lot of psychiatric input but never improved.
A few years later she had a fall which resulted in much reduced mobility. Since then she has lived in one room - bed and commode in the sitting room, just moving to the kitchen for some meals. She doesn't do anything -watch TV, read, knit, sew or engage in conversation. She just worries endlessly and repetitively about eg if the heating is working properly.
She has had the live in carers all this time funded by the insurance policy and her savings. About 5 years ago her savings ran out. BIL has POA and does all her financial stuff as well as managing the carers and practial stuff for the house though no hands on care. He managed to get social services to agree to some financial support and that was enough for things to continue until about 2 years ago.
At that point the care company massively increased their fees which meant that there was a considerable shortfall. Again BIL did the negotiations which meant some increase in SS contributions but there was still not enough so he decided that he and SIL and DH and I would top up - £125 a week for each couple (increased to £150 from this month).
He and DH are adamant that their mother should not go into a home. They feel that as they will ultimately inherit her house they will get their money back.
Some years ago (at least 15) MIL sold a field adjacent to her house. BIL had done quite a lot to negotiate with the council and developers so she got quite a good amount for it, some of which she gave to us and to BIL and SIL. DH and BIL feel that that means that it is only fair for them to fund MIL now.

MIL is not exactly healthy but she doesn't have any life threatening conditions and this situation could go on for many years. DH and I are both in our later 60s and both have disabilities which we manage independently now but may not be able to in the future. In addition we have two children in their 20s with disabilities which require additional support and limit their earning capacity.

I feel that although we may inherit there is no guarantee. If MIL was to require 2 to 1 or overnight care in the future she would have to go into residential care and the house be sold anyway. We are paying this out of income and even if we don't absolutely need it for day to day living now, we have good reason to want to save what we can as well as living reasonably comfortably now.

I really resent being given no choice about this funding. I am not sure that living in isolation like this is really in MIL's best interests. And all this is skewed but the fact that I have never really liked MIL - the feeling is entirely mutual.

DH is quite passive and happy to go along with what BIL says. We live a lot further away and have the DCs to be responsible for while BIL and SIL are a bit younger, in good health and don't have children.

I don't even know what the figures are and am not sure that DH does either. Nor do I know for certain what MIL's will contains.

Saying no would cause a huge family rift but it is what I really want to do.

Any advice welcome (if you have managed to get to the end of this screed).

@TizerorFizz to be honest if it's using 80, 000 of her own money from the house asset ( allowing for interest) - it makes more sense than using OPs money when clearly they don't have that kind of spare change down the back of a sofa- I agree that it makes more sense to sell up and residential care but if that isn't happening then someone has to pay for at home- and unless BIL can fund it in full and takes bigger cut of inheritance and balance it out then I would insist on equity release- she's 90 and has a lot of equity - so it's not like folks who stupidly do this at 63 with very modest amounts of equity and then wonder why it eats up all their equity

Yes, sorry I was just talking about equity release in general as people assume it's a bad choice but actually it can work out cheaper than moving. I think the OP mil is too old for equity release.

Downsizing at this stage is not a realistic option. It should have been done years ago but wasn't so here we are.

Arran2024 she is too old for some schemes but others have no upper age limit. I don't know how good they are though.
As BIL worked in banking before he retired he is considered to have all the financial acumen. Obviously he does know some things but I am not sure we should be totally rely on him.

I have tried to compile a list of questions we need the answers to before deciding the way forward.

MIL's income:
Pensions
Benefits
Insurance contributions
SS contributions
Our and BIL and SIL's contributions
Is there any capital left and if so is there any interest?
Any investments or other income?

Her outgoings
Care fees
Council tax
Utilities (water, heating oil, electricity)
House insurance
Food, toiletries, cleaning stuff
Phone, internet, TV licence (she doesn't use the latter two but the carers do)
Medical costs (podiatry, dental, optical, taxis to hospital)
Clothes and hairdressing
House maintenance and repairs
Replacing household equipment
Christmas, birthday etc cards and presents
Anything else

Has the house been valued recently or does anyone know roughly how much it is worth?
Are there any charges on it?
Should we revisit equity release?

Has anyone actually seen the will and if so what does it say?

What is the current state of MIL's capacity? Does BIL have H&W POA and has it been activated?

Has anyone asked MIL in a neutral way if she is still happy to remain at home?
Has anyone looked at local care homes? Found out how much they cost and what they are like?

Has anyone thought objectively about MIL's current living arrangements - lack of access to bath, shower, toilet; isolation; difficulty in getting out of the house; absence of facilities in the village?

Is that too detailed? Have I missed anything?

That looks a good starting list. As part of the last one I'd want a new social services care assessment.

@NoHaudinMaWheest I think that's exactly it - it needs a thorough looking at rather than looking at it through 'greed goggles' of 'getting their money back'

It's extremely presumptuous of your H too to presume you are happy to have less income for maybe longer term potential gain- what if you split?? I hate to say it but you would get jack shit as it stands as they don't own the house having been handing over thousands

A good list.

I’ve been prompted by another post that Age UK have a lot of useful information on their website https://www.ageuk.org.uk

My DM got £0 from SS because she had savings. They only offered 4 visits a day when they thought she had no savings and they were going to have to pay for a care home. They then lied to me about her discharge assessment at the hospital which was 100% that going home was not possible. They said that was not true! So at 99 DM never had any assessment from SS in her home because they will not spend the money on an “unacceptable” outcome - financially to them. That is, needs a card home at their cost. DM had been in hospital 3 times prior to the final time. Nothing from SS ever. Basically you know whether she needs a care home but many old people always want to stay in their home and relatives pay for this - in time or money. They might have neither.

@NoHaudinMaWheest I think you have to analyse all income and expenditure. Your list seems comprehensive but have you any idea what house maintenance might be? Or improvements if living there is difficult? If she has a decent enough house, why didn’t she downsize earlier? This seems very late in the day.

It’s foolish to take out a loan when she would have equity from selling if she needs a care home. I would insist she lives within her means and also make sure you do not pay in the future. Insist your family comes first. I’d also be against the BIL paying more too and paying himself back from inheritance. At what interest rate? Yet another complex arrangement which could be obscure. You will lose out there too.

I would look at care homes near one of her dc or both. She will be self funding so you have choice. Care homes here ranged from £4600 to £6000 a month, a year ago.

@NoHaudinMaWheest if your BIL is anything like my DB you may need to push quite hard to get full financial information.

When we started to look at care homes for DM, DB was very shy of giving me proper information. I had to tease it out of him.

DB didn't want DM to go into a care home (he wanted her to stay in hospital) so used the lack of financial disclosure to try to achieve this.

It sounds like she has such a miserable existence. No wonder she's depressed. She hasn't been able to bath or shower for FIVE YEARS because of not being able to manage the stairs? And she's existing in one room with a commode and a live-in carer?

She would be so much better off in a home! They have been an overwhelmingly positive experience for us - one of my relatives chose to go into one and really blossomed. Regular, varied proper meals (how good is the carer at cooking - IME they're variable, or is she living on freezer meals) cooked by someone whose job it is to cook appetising meals for elderly people. Company of she wants it - the care homes we used encouraged residents to sit together and encouraged shared interests. Activities, visitors from outside. One of them runs a toddler group in the home! She would see so many more people and have so much more to take an interest in! And she'd be able to shower regularly. It doesn't sound like the POA is acting in her best interests by keeping her at home isolated and miserable.

What happens if your or your DH's health suddenly deteriorates and you absolutely must stop paying the monthly amount because you need it for your needs? Or your children's needs?

GnomeDePlume that must have been so difficult for you. I suspect your are right re BIL. The family narrative is that BIL is the practical one and DH is the airy fairy academic. It is true that DH isn't very practical in a DIY type way but he is perfectly capable of understanding financial stuff. DH is now severely visually impaired which makes reading printed matter difficult though not impossible. I suspect that this is being used to say 'Oh don't worry about all the figures and details.'

EmotionalBlackmail MIL was depressed before things got so restricted when she could move around the whole house and the carers took her out locally fairly regularly but the current situation can't be helping.
The one room set up was put in place when she came home from hospital after a fall and at that time she needed hoisting and 2 to 1 carers. However this hasn't been the case for years but the arrangement has not been changed.
I suppose if you are seeing it all the time, it becomes the norm.
I hadn't seen MIL in the flesh for a long time (Covid, then BIL restricted visitors even when national restrictions were lifted, then we moved back to Scotland so visits require 2 night stays and it is very difficult to leave DCs alone for that long). However we all went down in the summer for her 90th birthday and I looked at things with fresh eyes.

Honestly, I’d never put my mum in a care home. They are horrible places, especiallly as most people in the ones that accept local authority funding will have dementia and a really high level of need. A nice care home would be £0000’s per week but even those have their issues. I think people on mumsnet romanticise care homes as the better option for people because of loneliness, but they are not some lovely social club. Although to be fair it sounds like your MIL would be able to fund a nice home.

There isn’t a definite relationship between cost and quality. Some expensive homes have facilities designed to appeal to relatives that the resident won’t actually use. What makes the difference is a good manager and happy settled staff. That can be found in care homes at any fee level

@NoHaudinMaWheest I think your BIL has far too much control but your DH isn’t close enough to do anything about it. Why doesn’t she have a stair lift for example? I don’t know how your DH can stand by and accept that this situation is ok. Let alone pay for it. No live in carers are cheap. They must be costing a fortune. Somebody needs to get a backbone and get MIL a better quality of life.

This is EXACTLY what I’ve tried to say. My father has been in a care home since age 60 (severe disabilities) and he has a very rich life. I said this already but reiterating. He is surrounded by people, gets taken out on day trips, they have theatre groups/musicians/comedians/all sorts come to the home and perform. He has many friends there his own age, and at a similar capacity to himself. He is always talking away to the care staff themselves. The decorate for all the holidays, have parties, help with hobbies. He had no money, it is fully funded by SS. If he was stuck in one room all day with one person there to care for him, if he couldn’t wash or have outdoor access, I can’t imagine how miserable his life would be.

People like to say how awful care homes are and how they would never do that to their parents. But I’m sorry, a lot of these parents are suffering much more because of this attitude. Give people some basic dignity in their final years.

@NoHaudinMaWheest it was tricky at the time. We got through it by me keeping asking the same questions and checking what he had included. Importantly I never got cross with him.

DM was in fact well able to afford the care home we found for her. Sadly she is now back in hospital and I have my doubts that she will come out again. However, having her space in the care home does feel like we are ready if she does make it out.

@MereDintofPandiculation I paid quite a lot of attention to CQC ratings. It probably depends on the area but in my area the low CQC rated homes are at the lower end of the price range and tend to be converted edwardian vicarage type places.

My preference was for somewhere purpose built. It was also important to me that it offered the option of increasing care levels.

I didn't have any CQC "outstanding" in my area, but a selection of good. I wouldn't have accepted less. Dad was an emergency admission (he declined very suddenly), and I was thinking he could go in temporarily and I could move him to somewhere better, but decided the manager and staff were so good that I couldn't get an improvement that was worth the disruption to him of moving him. This is a nursing home, so physical facilities aren't as important as the quality of the staff. Increasing care levels wasn't important - he doesn't have dementia, but he was very cognitively impaired, physically frail, and in need of the nursing care, so already past the care home level. I'm confident they can take him through to end of life.

Additional positives for me were a) it's only a couple of miles away, so I can visit regularly, and can walk there in the snow. b) the staff are happy to do whatever is needed - I can grab anyone and say "Dad needs his juice topping up/ a flower vase/is complaining of pain" and they will sort it, there's no "can you go and ask the kitchen/one of the housekeeping staff/a nurse". c) the manager is visible and hands on d) not only do all the staff know all the residents, they know all the regular visitors too.

It isn't a converted Edwardian vicarage, it's a converted and extended 18th C farmhouse

People like to say how awful care homes are and how they would never do that to their parents. But I’m sorry, a lot of these parents are suffering much more because of this attitude. Give people some basic dignity in their final years.

Very true. I dread the thought of a care home and losing autonomous access to the outside world, having full choice of food, sleeping hours, etc. But once I've physically lost those choices anyway, spending hours on my own in a room with a commode is no way to live,

When my father went into the care home he was given breakfast; mid morning coffee with biscuits; two course hot lunch; mid afternoon tea and cake; two-course hot tea. His medications were delivered on time. That's not achievable on 4 visits a day.

When my father went into the care home he was given breakfast; mid morning coffee with biscuits; two course hot lunch; mid afternoon tea and cake; two-course hot tea. His medications were delivered on time. That's not achievable on 4 visits a day.

Same with mine. He had his own en suite bathroom that was cleaned for him, was showered, shaved and dressed in clean clothes daily, had his own TV to watch and privacy in his room. And importantly, he was safe from falling or becoming ill where no one would have seen or been aware or able to help him for hours - I was two hours away and had many a fearful moment when he didn't answer the phone picturing him lying unconscious or unable to move. He had fall alarms but through repeated falls never once used them. His safety and quality of life were much better in the care home, even though for various dementia related reasons he wouldn't have admitted that.

if you are hoping to be “repaid” from the estate then I would not want to rely on a will, even if you have seen it. Wills can be changed at any time.

If you are going to continue to fund MIL then I’d explore the idea of it being a loan - effectively setting up a private equity release scheme, although probably on much better terms than MIL would get if she went to a commercial provider.

A loan could work?

A signed agreement that your MIL owes money for care now - and that loan to be repaid out of her estate before anything else? Or to be re-paid on sale of house?

The way some people post its as if many older people are having a fab life at home , getting out and about, having great meals , lots of mates meeting up etc - if the situation was like that then care homes wouldn't usually even be on the agenda - it's only usually on the agenda because someone's health and personal care needs are beyond the level of family coping , no family to help at all or their are constant falls/dementia etc excluding of course well off physically and mentally pensioners who make the choice for themselves ( and usually pick apartment or bungalow complexes with extra care) For many older people with big health issues it can be safer and more social - depending on the quality of care of course .

@Crikeyalmighty Unfortunately as people get very old their friends die. My DM reached 100 but even younger friends had died. The last one going was a disaster because you do end up realising carers or relatives are all who are left and relatives aren’t always handy or caring. DM did spend her last 6 months in a home and it was a huge relief. As I said earlier, access to a GP was a big bonus. Kind staff who chatted and other residents made her life so much better than home. Neighbours at home were nice people but busy and she wasn’t their responsibility.

Like many she had adopted the mantra of living st home come whet may, but 4 visits a day was never going to be ok. She was intelligent and needed stimulation. Her health improved so much at the home they included her in their group that went to the local theatre for the panto last year. Unfortunately she got a terminal illness last Feb and thank God she wasn’t at home. She was 10 mins drive from me in the home and it was such a relief to have her there. I think the DM here might well improve for stimulation.

TizerorFizz it is good to hear that your DM's last months were good in the care home.
MIL has always been a very negative person so it may be true as BIL and SIL seem to think that she wouldn't engage with anyone or any activities in a home. However she would have more stimulation and the opportunity to engage if she wanted. At the moment she is firmly stuck in a very deep rut.

@NoHaudinMaWheest I won’t pretend it doesn’t require a shift in attitude. It absolutely does. However even the most reluctant person seems to join in with something. Having a chat over coffee and not worrying about cooking was very pleasant for DM. The home had a great garden and lots of families visited residents and had tea in the garden. It just seemed a calmer way of living at a great age. I think you have to look at lots of things with homes but it’s not impossible to find a good one and peace of mind which you cannot really have at the moment.