Is this fair to DF?

[user563846]

DF has dementia and physical needs. DM has been looking after him at home with some help from a carer and from DSis who lives nearby with her family. I’m a long way away.

DF’s needs have increased over the last year. He now needs either to go into a care home or to have live in carers. The house is large and they have lots of money so live in carers would be an option. If he went to a care home, DSis would move into the house and DM would move somewhere smaller.

DM wants him to go into a care home. DF doesn’t want to. He’s always expressed the desire to be at home and hates the idea of a care home. He has tried a couple of ‘respite’ stays and didn’t like it. He’s losing capacity pretty fast.

I feel really sorry for DF. But it’s also clear that having carers around all the time would drive DM crazy.

You literally have to stand back and watch the wheels come off. It's incredibly distressing and something I wouldn't wish on anyone , but is the reality for many as dementia advances through their lives. Your mum may not want more home care, but she can't have an alternative at the current time either, so she then has to make a different kind of decision

Oh gosh what a horrible situation then. I apologise for my earlier responses as I thought you were very much on the side of keeping him at hime.
Is there anyone else he might be more inclined to listen to - with my friends DF he never formally was deemed to lack capacity but in the end it was impossible for him to stay at home as he lived on a Scottish island and his two adult DC lived many hours away, he refused to budge until the family doctor sat down and had a long conversation with him and then he agreed to go into a care home.

But if he is absolutely adamant he won’t budge then I guess moving is the only realistic option open to your DM. Maybe she could try renting rather than buying, or even a long holiday somewhere,as I suspect her loss will trigger a decline in your DF.

@lifeisgoodrightnow I think a break for DM would definitely be a good idea
@rookiemere maybe the GP could talk to him, worth a try anyway, thanks

Care needs assessment:

www.nhs.uk/social-care-and-support/help-from-social-services-and-charities/getting-a-needs-assessment/

You can arrange for him to go into a care home yes, and take him there. What would happen once he was there, if he was expressing that he did not want to be, a deprivation of liberty (DOL) order would be applied for and his capacity would be assessed by social services and psychiatrists/dementia experts. This would go before a judge and involve your father having someone appointed by the court to represent his interests. This is all a separate question from power of attorney and would supercede it anyway if he was deemed not to have capacity on this decision.

Social services could also argue for his return home and it could be that they would want to see that at home care had been tried and failed, or they would want to try it themselves (as was in fact the case with my loved one even though it had already failed multiple times). Although I'm not sure how the opposition of his spouse would affect things. It is a complicated and horrible thing to have to do, but yes it is possible.

Are you prepared to move closer to manage and organise DF's care in his own home? If not and others aren't prepared to do this either you will have to look at a different option.

OP, we have been in precisely this situation, and it was bloody horrible. FIL had dementia but enough capacity to know that he wanted to be at home. MIL was completely not coping and wouldn't contemplate live in care (as others have said, it really doesn't alleviate the massive mental and emotional load, and it's a massive thing to have someone living in your house when you're still sprightly). Plenty of money available. Other family members deeply divided on the right course of action. In the end, FIL was pretty much railroaded into a care home, after a few separate respite weeks over a year or so. It wasn't a total 'forcing', as he still just about had capacity - but MIL is a force of nature and basically made all the arrangements, and FIL pretty reluctantly went along with it (he was always the less dominant partner). MIL felt guilty and visited him every day, but he never really settled in the home - it was a nice place, and he wasn't desperately distressed, but he was pretty confused and sad. In the end he was only there a couple of months, and then died very suddenly. Who knows whether the end would have come as quickly if he'd been at home still, but to be honest he had no quality of life left wherever he was.

I'm sorry, I'm not sugar coating this - it was bloody awful, and there was simply no good answer: their needs and best interests were in direct contrast, and it was effectively a stalemate - FIL had the right to refuse to go into a home, and MIL had the right to refuse to have a carer living in her home (or to continue providing round the clock care herself). If MIL had known he would die so soon, she probably would have kept him at home. But she didn't know that, and it could have gone on for years. I'm so sorry you're facing the same situation. I don't really have any advice, as I'm not sure we handled the situation in the right way - but I would echo others in saying that it's almost impossible to imagine quite how relentless it is to live with and care for someone with advancing dementia, particularly if the relationship has become fractious and resentful (which theirs had).

That's how it happens so many times. There had to be a crisis for everyone to really understand that things can't continue the way they are, or for a decision to be taken out of someone's hands. So often you just have to watch and wait for that to happen. It's like watching a slow motion car crash. And it's totally shit.

Seeing your parents in some horrible crisis situation doesn't mean you haven't done enough or haven't been looking after them properly. It's just the way it goes sometimes.

Your father could live for a long time with dementia. He will not necessarily be happier staying at home and he has almost certainly lost sight of how much care he actually needs.

My mother had dementia for ten years, 7 of those in a care home where she was very happy.

Another close relative with dementia tried live-in care at home. It did not work out at all. She agreed to it but she resented the carers, complained all the time, and demanded the presence of relatives who had to constantly step in. It is not necessarily an easy or straightforward option. In the end she moved to a care home.

This is a decision for your mother to make, as she is the one living with him. The only way you understand what the person needs is if you live with them. From the outside it looks very different.

I know this is very difficult, I have been through it with three relative. And I am sorry to be blunt but the way you are talking about it shows that you have little insight into the realities. When your father no longer has capacity, the person with POA makes decisions on their behalf. That is what it is for. It is unpleasant to have to do it, no one wants to put their relative into a care home. But sometimes it is the least worst option.

OP have you considered moving in with your father allowing mum to move into part of the house or new place? Whatever is decided you would all benefit from legal advice as there may be tax, IHT, and deprivation of assets to be considered.

If you live far away then I agree with others that you’re not seeing the realities. The problem is a lot of older people are incredibly stubborn about ignoring their needs and wanting to be at home however inappropriate. You also have to weigh up whether it is worth ruining your mother’s life to maintain a position from your father who will have poor judgement.

My granny was incredibly independent until she got cancer and didn’t adjust well to needing carers. She sent them away and nearly killed my dad and his brother with her demands until they’d reached the end of their tether and said nursing home was needed. She never forgave them but she didn’t see what she was doing to them. There is a lot of dementia on my husband’s side and I’ve seen that really affect his parents and
how it took over their lives. We got to a point where his grandma had been in assisted living for a while with carers but she kept falling as her insight just wasn’t there that she was old with balance issues. Assisted living wasn’t enough and she had to go into a nursing home. Even at that point she still wanted to be at home and was angry but she wasn’t safe.

Those disagreeing with OP are missing the point that legally, whilst he is able to express his wishes about wanting to stay at home, and his care needs can be safely met, and he has the financial means to achieve this, there is little else to be done correctly. If his wife cannot live with that, she can chose to live elsewhere, maybe even with one of her daughters? It sounds harsh that she has to move out but she is not the one with dementia. Moving someone with dementia to a care home, when they can afford not to have to do that, is even more harsh in my opinion. At least at home the surroundings are familiar and he won't feel so lost and miserable.
Some people do really well in care homes, particularly if they have been lonely at home and thrive on having others around them. OPs DF has tried a care home and hated it. Are we really saying he has to spend the rest of his life miserable because his wife does not want carers in the house??

It's a really difficult call to make with no great outcome either way. With dementia you're always looking for the least worse option and even then you're having to make the best decision you can at the time.

Don't think you've said OP but how old actually is your dad and what's his health like aside of the dementia? Sorry to sound so mercenary but a diagnosis that gave him a shorter life span might prompt different outcomes to the idea that he could have another 10-15 years ahead.

I'm wondering if it is worth trying the 'separate spaces in the house' plan with live in carers, plus lots of admin support from people who aren't your mum. The care home option can then be researched and used if the live in care doesn't work.

How can your DF need full time care, day and night, because he has dementia and still have capacity in a legal sense?
I’m speaking from the experience of my beloved DM having dementia. What she really wanted was to be at home, with her parents. Home for dementia patients is a time, not a place. I did manage to keep her in her own home for a few months with full time care, day and night during the week while I managed the weekend myself. It was exhaustingly relentless, even when I wasn’t there. I had to manage the carers, the bills, the budget, the carers’ holidays , the sick leave, the menu for my DM. If you OP want to keep your DF in his own home, full time and long term (a very commendable wish), then you should be in charge of it. Give your mother and sister a break from all the mental load of caring.

Two potential sources of advice

1. book an appointment with an Admiral nurse via Dementia UK- they are incredibly helpful and will have seen this situation a thousand times before.
2. Nellie Supports will do a capacity assessment for you to see if your DF has capacity to decide where he lives. (Especially if he is deciding to live alone with carers).

Also to echo what others have said- support the decision of your DM and DS who are actually doing the heavy lifting here, unless you are prepared to move back. Sorry to be blunt but you really really want to avoid family falling out.

I was thinking a lot about this last night.

We talk about a crisis happening and I thought about how that would manifest. Your DF already has dementia, he isn’t going to get any better.The carers have said they can keep him safe at home - although it needs to be checked if this could be extended to overnight care. It sounds as if he has or likely could pass a capacity assessment at this point in time, so can’t be forced into a home - yet.

Your DM sounds as if she is more at risk here of having a breakdown or physical issue due to the long term stress of looking after your DF. Therefore I think the short term priority needs to be on removing your DM from the situation as soon as possible so she can have a break. Your DF going into a care home is the most sensible solution, but as she was planning on moving out anyway then either a few weeks holiday or a short term rental for her might work if you’re able to take on the heavy lifting of arranging the care agency.

It’s important to remember to - particularly if they are very aged - that your DMs mental capacity may not be 100% either so she may be digging her heels in or unwilling to compromise from what she sees as the right solution.

I don’t think your DFs care at home will last long and after a couple of months of it he may be willing to move to a home once he realises his DW won’t move back in.

We had carers coming into my DP home, 6 times a day, to cover them both. I was staying there at the time. I found the carers constantly deferring to me to answer questions, lead on care giving etc, even though I had told them to just get on with what they needed to do. On the rare times they did delivered care by themselves they would come and update me on every single little thing, rather than when they were leaving. And they were good carers.

You have observed live in carers from a distance, in quite a different circumstance to that of you DPs. Whatever is arranged for your DF he will be discombobulated by the change - carers living in, your DM moving out (must admit never heard of this situation), moving to a care home. Let your DM and Dsis lead on this - they are there day in day out. It's fine to talk through options, but don't push too hard for your view to be accepted.

My DF was totally exhausted by the responsibility of caring for my DM at home. It was the low grade constant worry, especially over night that was the real backbreaker. I do understand you are trying to respect your DF's wishes, but there comes a point where you also have to consider the welfare of your DM, and that it may be in direct opposition to your DF's needs and wishes. Your DM is probably at this point - let her lead on this.

Re your DM moving out - it sounds as if this was the family home so she would have lived there many years. You don't just pack a suitcase, call a taxi and leave all in the space of an afternoon. She will want to sort through her things. The whole downsizing exercise can take weeks at best. And she needs help with caring now.

Say you persuaded her to go down the live in carer route - this too can take weeks to set up - interviewing the staff, finding the right staff, sorting out their living space. So bedrooms and bathrooms will need to be cleared at best, reburbished possibily, rotas set up, cupboard space in the kitchen found. And remember she wants, she needs help now.

With your DF going into a care home, which will also take time to set up, your DM will have time to sort the house and downsize at her own pace. She can take a breath before she moves.

My apologies this has turned into an essay. Maybe this shows just how complicated caring for someone with dementia is. There's never a perfect way, just the best you can do and different solutions suit different families.

To those who have asked how can someone needing full time daytime care and living with dementia have 'capacity' Capacity is assessed as situation specific , so for example, as in this case a person can have capacity over where they wish to live but not have capacity over the financial and practical mechanics of how that actually works

Well summarised and so unfair on the poor sod expected to “support” the dementia sufferer in their choice.
I do wonder what happens in these circumstances where there are no beleaguered relatives to pick up the slack. Presumably the person wanders around until deemed a sufficient threat to themselves to be moved to care.

Yes basically. So, for a person living.on their own for example, they become a risk to 'themselves and others' either by taking risks (leaving oven on being a classic, as is walking out of the house in the middle of the night in pajamas in freezing temperatures) Where theres no relatives, professionals often find that a fall or similar activates the need to be looked after. Often there are neighbours or friends taking a LOT of responsibility.

I was talking to a woman socially who used to own a care agency when overnight carers were suggested for my uncle. She was saying most people don’t like the idea of overnight carers as they lose all privacy in their home. For your mum it might feel like having a permanent house guest and not always the same guest. Just more work for her?

This was our experience too. Really horrible having to tell FIL he couldn’t go home because his wife couldn’t cope with him. With hindsight we should have stopped fighting for him to stay at home sooner and then been able to spend longer choosing the home. We had to take the one that had a space available and it wasn’t nice. If I were you OP I would stop worrying about your father’s capacity and concentrate on finding the most suitable care home for him. Heartbreaking as it might be, he doesn’t have the choice to stay at home any more.

I agree with you on this- it simply won’t feel the same if his wife is no longer there and he’s got carers coming and going to maintain shifts - and I totally understand the mum not wanting this too - however if he still has capacity and there is no POA on health he can’t be forced . I wonder if it would be worth giving it a 6 month trial with ‘live in’ and the mum rents somewhere separate but close to see how it goes . It’s not as if she hasn’t made it clear that she doesn’t want to be in a house with carers coming or going . It may work or may not - but may also make him see that it’s not maybe the solution he may think- personally I think a really high end in terms of ‘standard’ if they’ve got plenty of cash , but still very caring care home and the wife visiting very regularly would be better for all -