What to do when the carer can't really care?

[callmybluff]

DH and I are at a total loss of how to help his parents. FIL has mild-to-moderate dementia - he's quite forgetful and a bit confused, can't be left alone for very long, can no longer do quite a lot of cognitive tasks, and needs some practical help (eg some help choosing clothes but not yet any help with toileting etc). However, most of the time he's still pretty lucid - he enjoys conversations (more one to one than in groups, which he finds hard to follow and tends to zone out), his longer term memory is still pretty good, he can still do quite a lot of things himself (albeit slowly), and when he's given time and patience he's pretty content and engaged.

Trouble is, MIL is basically not capable of providing this type of care. She potrays FiL's dementia as far worse than others observe it. She's impatient and shouty and is constantly nagging FIL to do things that he can't do and then shouting at him and calling him names because he gets them wrong. She makes him anxious and on edge, and is basically making his life a misery, but she's also at the end of her tether and seems close to falling apart herself.

We just don't know what to do. We've tried to talk to to MIL about being kinder and more patient, and she says she agrees, but she can't actually do it. She has carers in for a couple of hours a week to take FIL out, and we've tried to suggest that she increases the hours (which they could easily afford), but she thinks it's a waste of money because they're not 'doing' anything (ie because FIL only really needs companionship atm, not nursing care). We go over when we can to give her a break, but we both have demanding full time jobs and two children, and we live a three hour round trip away.

What MIL basically wants is for FIL to go into a home. We feel it's too early for that - he still has the potential for quite a high quality of life and we feel a move into care would cause a big deterioration (plus he still has capacity and he doesn't want to go). He's devoted to MIL (in spite of the way she treats him) and doesn't want to be away from her.

She's suggested a week or two of respite care. We can see the advantage of giving her a proper break, but we're also worried about the confusion it might cause (he was awful for a while after they moved house). And even if it's OK, it doesn't solve the underlying problem, which is that he needs care that she can't provide.

What do you do in this situation? At the moment the dementia is ruining both of their lives, and although we're upset about how badly MIL treats FIL, we also recognise how hard it is for her to take on a caring role for which she's pathologically unsuited. Do we try harder to push for more care at home - even though she hates having carers in the house, and ultimately it's their money, and he's been convinced that he should be able to manage without? Or would it actually be better for him to go into a home even if it's 'too early', given the situation at home?

Thanks for reading this far.

And of course the property still belongs to him! What an odd thing to say

I’m not surprised she’s overwhelmed, she needs daily respite and it must be exhausting for her. Can he go to a day centre Monday to Friday 9-5

Look OP, there’s a lot to agonise about here. Agonising solves 0. Believe you me, you’ll need every ounce of energy for the years ahead.

Harsh alert - You’re being too nice. Nice doesn’t cut it in this situation either.

MIL either gets live in care or shuts up
moaning. IME this point can be made politely. But she loves moaning (so would I in the circs) and drama (who doesn’t) & you don’t. So you take the only choice you have, as below.

99 per cent of rationality, kindness and bending over backwards to help doesn’t work on the demented or the stubborn.

What can be surprisingly effective is laying out MILs options gently and walking off. Literally. Don’t engage. Do not involve FIL as he will stress out.

At all costs do not take FIL or MIL into your home as you might regret this in 15 years when you still haven’t got a spare room and have had to give up work cos FIL keeps setting the house on fire.

If calm disengagement doesn’t work, you get to wait for the ‘crisis’ which is surprisingly common. One of them falls downstairs. Awful. Lone upside: SS step in and all of a sudden, they’re amenable to reason.

FWIW, I would consider the ratio of FILs gains v. MILs losses in every situation. Long term. And, of course, yours.

Dementia gives diminishing returns and the more care he needs, the less appreciative FIL will be able to be.

Don’t forget that whatever you do, FIL will only get worse. These aren’t his final
months or years, either, he’ll just get worse and stay alive, or at any rate not dead. And worse. Sorry, that’s horrible - and more true than it should be. At some stage he’ll die but that could be in 20 years of something else. Think long term.

I’m sorry you’ve lost your Dad @Clymene it’s a horrible time, but I think the key in your situation is they had both agreed it was time for him to go into care. had the time come. This man hasn’t agreed. If he was single he could request care in the home so I think he could in this situation too. What he can’t do is insist his wife cares for him.

You think he wanted to go into a care home? Of course he bloody didn't. But he accepted that my mum - supported by a team of carers- could no longer care for him.

None of this is black and white. There are no easy answers. And unless you've been there (and I'm guessing you haven't) you simply have no idea.

The OP's FIL hasn't asked for more carers. That's the OP and her husband's idea.

I didn’t say he wanted to I said he had expressed that he thought that’s what should happen. You’re very wrong about my “experience”. Not everyone who disagrees with you is ignorant. Consent and capacity are important.

Yes, my dad reluctantly consented because he had capacity. He didn't have dementia. Which is why the OP needs to arrange a capacity assessment for her FIL.

No one should have to care for someone if they are no longer able to do that. A care home is not a terrible fate.

It’s not a terrible fate at all but it’s also not the only option (or at least we don’t know it is). MIL has said what she wants and she could explore options, FIL has said what he wants but it isn’t possible as MIL isn’t willing, so alternatives need to be found.

So you would fight to coerce one elderly woman, who is struggling and saying that extra carer time doesn't help, into a situation where she is locked into a full time caring role whilst watching her husband disappear?

Have you ever been the caring partner in this situation? Carers may come in and alleviate some physical tasks but that 24*7 "on call" strain of caring for someone who is turning into a stranger is overwhelming for most people which is why it has to be that carer's primary decision.

If you want the say, then you take over the 24*7 care.

Residential care which encourages activity, therapy and lots of visiting time and has specialists in the condition can actually be better for the person with dementia as well as the spouse who is also going through a grief process.

The stars which should appear in "24*7" seem to cause the post to appear in italics across different lines - sorry!

It is the 24/7 strain that wears you down. My mum had two care visits a day which helped, especially when the pandemic came and the morning visit left me free to have breakfast at my own pace, with my family instead of the two/three visits I would make to her to give her breakfast in bed, help her dress and see her into her arm chair. But what broke me in the end was the relentlessness - the fact that her needs meant I was unable to be with my family/on the phone/doing anything for longer than 45 minutes without her calling me with her alarm. And forget about leaving the house! For 2 years my life was entirely subsumed into hers and were it not for a crisis that saw her in hospital I don't know where I would be now.

My mum had mobility issues but until she went into hospital she was able to present as bright and with it.

If he is still able to enjoy being at home to this degree, then, although MIL is getting worn out with it, there does not seem to be a case for encouraging him into a home, where going for a long country walk would be impossible. The people running the home have safety at the top of their list and would be unlikely to let someone go roaming on their own, and they certainly would not have sufficient staff for someone to go with him. Residential and nursing homes can be run really well, but they all finish up curtailing freedoms, as they have the inspectors breathing down their necks.

Unfortunately there can be a whole list of reasonable things that you would all like him to agree to, but if he does not then that is that I am afraid. Unless he clearly becomes a danger to himself or others, he is free to make his own decisions.

I can understand why MIL does not want more carer time. I had carers in to help me with my OH when he was very ill, and it really does impinge on home life and privacy - and carers change shifts a lot and you finish up having to explain the routines etc. to new people all the time. And you could bet your life my OH would need the toilet just as they were leaving through the gate! - he could not stand and I could not lift him.

I think the only way forward at this stage is tinkering around the edges: gradually introducing more care input, and edging him towards accepting day care help. Or indeed trying to get MIL out of the house on a regular basis and putting in care for those times - if, and only if, she wants to go out.

It is a difficult stage, but it will pass and sadly as his needs become greater the way forward will become simpler.

If he is still able to enjoy being at home to this degree, then, although MIL is getting worn out with it, there does not seem to be a case for encouraging him into a home, where going for a long country walk would be impossible.

You do know that family and friends can take him for a long walk even if he's in a care home?

I do - but I am also aware that those running the home get quite twitchy when residents are off the premises.

Thanks again for the posts, they're so helpful. It does feel like quite an in-between stage at the moment - a big strain on MIL to care for FIL, but he doesn't feel ready for a home (though I'm increasingly feeling from this thread that residential care might be the only option). I've been reassured by some of the comments on care homes - my only experience of one was many years ago and it was really pretty grim, so that's probably colouring my view. If we can find one with nice grounds and stimulating activities then perhaps it wouldn't be do bad - maybe even a positive step for him as well as her.

The 'in-between' thing has also been the issue with the daycare they've tried - that the other visitors are all 'worse' than FIL (that's MIL's words, not mine). The things he enjoys are long walks and talking about history, politics, sport etc, which he still remembers a lot about - whereas they described the daycare as more about cups of tea and gentle movememt to music and 'chucking balloons about'. While I'm absolutely not knocking those services, which I imagine are absolutely invaluable in some circumstances, I think they both felt very out of place and rather wondered what the heck they were doing there. There may be more appropriate daycare services which they haven't found yet. From the research I've done, it looks like some of the care homes do daycare services too, so that might be an opportunity to try them out.

Luckily there won't be the need to sell the house to pay for care. I do wonder whether it would be better for MIL to move somewhere smaller and easier to manage, but I suspect she will strongly resist that. We do help with a lot of paperwork etc, which FIL used to handle, but it's harder to help with practical stuff at a distance - I struggle to maintain my own house and garden in between work and kids tbh, let alone another house over an hour away. The distance is not really something we can do much about, short of moving house, and I'm afraid I'm not prepared to give up both our jobs and move the kids from the school they love in order to be closer by - if that's selfish, then I'm afraid I'm selfish.

I think the next step is to visit some homes, try to help MIL persuade FIL to try a respite week (or arrange that here as soon as we're able to), and take it from there.

NB @Mischance that kind of 'tinkering' was exactly what we hoped would be possible (eg upping the care so that she can have more freedom to go out and about, or just to be at home without being responsible for FIL), but this thread has really helped me to see that it's too much of an assumption on my part to think that that would be the right or best option.

I do - but I am also aware that those running the home get quite twitchy when residents are off the premises.

Not in my experience. I've never had any issues taking relatives out.

Yeah.

Absolutely not this.

You do need to let someone know so that they don't waste time looking for someone who is 'out' but otherwise, exeats were encouraged.

@Mischance I'm not sure what care homes you are familiar with but the ones I have worked in are not like this! Always encouraged residents and family to go out!

OP "The things he enjoys are long walks and talking about history, politics, sport etc, which he still remembers a lot about "

that's great. Who does this for him? They can still take him on these trips, no problem.

If he’s enjoying long walks on his own, then walking to someone else’s timetable and pace just isn’t the same thing. Maybe he does need to be in a home - but don’t pretend he will still be able to have his long walks.

if we can find one with nice grounds Also ask whether he has free access to them or whether it’s only at set times or when accompanied by a carer.

I think you also need to consider that MIL doesn't necessarily have to move where FIL does. Your DH wants to have a say in the living situation of his dad and his care, but he has no say in where MIL lives.

I think MIL is trying to tell you that she does not want to be the carer of FIL. A few assumptions probably need to be challenged before you can come up with a longer term solution.

If he’s enjoying long walks on his own, then walking to someone else’s timetable and pace just isn’t the same thing. Maybe he does need to be in a home - but don’t pretend he will still be able to have his long walks.

He has dementia, that's what's really restricting him. Personally I wouldn't be allowing someone who is " quite forgetful and a bit confused, can't be left alone for very long, can no longer do quite a lot of cognitive tasks" to go on an long unaccompanied walk, care home or not, because it could all too easily end in disaster. I looked after someone with dementia who regularly went into town and went to the bookies then on one of those trips he was found walking along the middle of the dual carriageway. His family didn't want to acknowledge how bad his dementia had been, and it was evident even then, but that forced them to do so.

I don't think the OP has confirmed he goes for long walks on his own has she?

I hope not. We had to call the police when an elderly relative with dementia just got completely confused and was found 4 miles away with no idea where he was or how to get home.