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.

MiL is trying to tell you she can't cope. Listen to her.

I have a disabled son. At times I have a coping crisis. No one listens to me because they just want me to carry on looking after my son.

Your MiL knows her husband best. If she thinks he should be in a home, then that is the right decision. Help her look into it.

Mil continuing to look after FiL in their home might be best for FiL but it isn't what's right for MiL. Why do his needs trump hers?

My MIL was absolutely hopeless with FIL.

However when he went into a care home she was brilliant with the other residents.

Some how she was close to FIL and always felt he was doing it on purpose to annoy her.

With the others she could see it was dementia and was able to use all the techniques.

Day centre was great for both of them as eventually was the care home.

Your mil is telling you she can't cope you must listen to her poor woman. I'm a nurse and I work with people with dementia , I'm glad I can leave after my 12 hour shift as it's relentless. The poor relatives have this 24 hours a day, perhaps with very little sleep and countless jobs like more laundry etc and frequently answering the same questions day in day out .
Your fil may also mask his dementia in the early stages when you visit and he may be a lot worse than you think he is.
Maybe a few weeks respite in a care home every so often would be the welcome break your mil needs

Sorry about your FIL OP. If it were my relatives, I would fight for FIL to be cared for at home for as long as practically possible to do.With more increased daytime care from carers and a night watch carer in the night incase he tends to wake up at night and wander. Which is why carers are tired during the day as they don't get enough sleep / rest during the night.

Care homes should really be the very last resort after ALL options have been exhausted. Good luck, OP. I hope your family finds a happy medium.

It's not down to you. Your mil must be exhausted. It must be like looking after a child at an old age. See if there are any homes suitable for dementia patients. You can always visit often, and know that he's safe.

Many of these haven't restated after the pandemic but it would be good respite for both of them

You cannot force someone to care...

If she cannot cope with him, then unfortunately you have to accept that.

You are watching this from the outside and you are not the one expected to provide 24 hour care so I think you are being unrealistic to just expect another person to automatically do so.

You need to look at alternatives which is likely to be residential care.

This. She obviously can't manage with him at home, he couldn't cope on his own so the only option is a care home. It really isn't yours or dhs decision.

Care homes should really be the very last resort after ALL options have been exhausted.

I don't agree. No one should be waiting until the person caring is utterly broken and if you wait too long the welfare of the person who is being cared for suffers too because they are receiving inadequate care. The carer's wellbeing matters too and she isn't coping.

I've been a carer 3x now and it's all consuming and the first time(Caring for a person with dementia) literally drove me crazy and I was only in my early 20s at the time so young and healthy) People who are only visiting, family or not, don't know the half of it and it's arrogant to think that they know the situation better than the person who is actually caring for the individual concerned.

There can be such a gulf between what people think they see and the reality of the situation. An example of that is when a mental health nurse came out to assess a relative. She passed the dementia test with flying colours, and how I don't know. 3 hours later she was on the phone talking utter nonsense. Two days later she was admitted to hospital because her dementia was so bad and she never saw her home again. She was moved to a nursing home.

If she can't cope, and I don't blame her, then she can't and you should start looking at homes.

Mil is both showing and telling you she can’t cope. She’s also much better placed to understand the extent of his illness. I mean this kindly but you have to stop dismissing her and start listening.

the underlying problem, which is that he needs care that she can't provide.

If the underlying problem is that he needs care that she can't provide and your family unit are just too far away to provide that missing support, then perhaps it is time to consider a place in a home for him.

I realise that I am biased in that DF decided to take himself off to a home. It came as an absolute shock to us as his children but we got used to the idea in time.

It was so much better for his relationship. They could see each other most days and DM could go home to a peaceful home free of the chaos that unmet needs bring, knowing the DF was in a safe environment.

Do listen to the person who appears to be being unhelpful. They are probably still under playing the issues and are certainly the person with the lives experience of the relentlessness of dementia

They need more care in the home, a relative of mine is in a similar situation but further down the line. Started with a few hours of care, cleaner, meals on wheels, family help. Carers were then coming daily & now there is live in care.

It sounds like you're prioritising your father's wishes and wants over your MIL's needs and mental health.

But if he has capacity how can he go into a home against his wishes?

OK, thank you so much for the very honest responses. I totally take what you've said on the chin. I think I've probably underplayed my sympathy for MIL - I do honestly understand that it's very different caring for someone 24/7 than just visiting them, and that it's incredibly hard - but it's also just heartbreaking watching her treating him badly. (When I say nagging, she never let's him just sit - she wants him to help in the house, and seems to deliberately ask him to do things he can't - like to go and find something that she knows he won't be able to, and then mutters that he's useless or calls him stupid when he can't). I recognise that part of this is probably a cry for help to demonstrate that he's not able to do things.

You're right that we need to go over at weekends more - it's hard because we both work a six day week and the kids have weekend activities, but we do need to try more. I also have my own ageing parents to consider, who need my time too.

I think the idea of semi sheltered housing attached to a care home is very interesting. I think the challenge would be to get them to move again very soon after they've recently moved, and I think MIL would be resistant to the idea of sheltered living (because she's fiercely independent and totally capable herself), but it's worth a conversation.

Re finance, I think she would be a bit appalled by the cost of a care home, but I think she would see it differently because she could see what she was paying for (ie full time care, compared with an 'extra' carer at home when she's already caring for him).

I'm still not sure what the solution is, but you've really helped me reframe this in my head - I think before I was thinking in terms of how can we make it easier for her to care for him, whereas now I'm thinking more from a starting point of 'he needs care, what's that going to look like if it can't come from her'. You're right that his needs don't trump hers, but also he has capacity and her needs don't trump his. He wants to be with her, and to stay in their own home. She also wants to stay in their home, but doesn't want carers in all the time or to care for him herself. We want to do more, but can't possibly provide substantial care when we're out at work most of the week and live a distance away. Ultimately, someone's needs/wishes are going to have to be trumped by someone else's.

What MIL basically wants is for FIL to go into a home. We feel it's too early for that

then FiL comes to live with you.

what, I hear you cry? You have busy lives, things you want to do and you don’t want to be a full time carer?

well no, and neither does your MiL.

so stop having a go at her for not being the perfect carer, stop trying to force her to do it when she’s literally said she can’t and he needs to go into a home.

and apologise, profusely, for the way you have judged her.

No one has mentioned a live-in carer/companion. If they have space and money that could be worth exploring: they get to stay at home but MiL has support and help.

But if he has capacity how can he go into a home against his wishes?

I'd wonder if he still truly has capacity considering what the OP says. That should really be assessed again if it's been some time. Dementia can sometimes deteriorate very quickly too so things could change rapidly.

We are in a situation about making decisions re my Fil. He does not want to go into a home but is incapable of living alone. We have discovered live in full time care to be cheaper than the care home. The carers he has been having since leaving hospital have been fantastic, have taken the time to get to know him and are really upbeat and cheerful. When our care package expires in a few weeks he will move to 1 carer living at the house full time paid by him. This might be worth exploring

From experience, I thinking finding FIL a care home ASAP is key to both MIL and FIL having some more happy and dignified times.

@HoldingTheDoor but if he does have capacity?

Of course have him accessed but my relatives I referred too are mid 90s, lots of things are failing but they are adamant they are staying in the home & have capacity. Hence why they have live in care.

You're working six days. MIL is caring 7 days, 24/7/365. She sounds exhausted. Have you heard of compassion fatigue? Maybe MIL is suffering from this?

MIL asked for two weeks respite. She's asked you for a break. With the care she is doing, a two week break is reasonable, but you don't want that for FIL. So, take two weeks off work and go and stay with him so MIL can have some respite.

I have done both and the demands of a busy young family life are nothing compared with the relentlessness of caring 24/7/365 with no end in sight.

Is it possible your MIL is losing some cognitive ability?

Is it possible your MIL is losing some cognitive ability?

that's a good point

Not if she doesn't want that. The OP says she's absolutely fine. I would absolutely hate having someone living in my home.

Care homes are not just for people who have zero capacity. My gran moved into one because it simply wasn't safe for her to live alone. She was much less lonely than she had been. She made friends, she was fed and had companionship (and solitude) when r she wanted it.

I've been through this.

Capacity is decision specific. If FIL cannot be left alone for any length of time as he becomes a danger to himself (?) then I put it to you that capacity over where he lives is much more nuanced than you understand and he would benefit from much more detailed assessment. We ended up in the Court of Protection as my parent felt that they were fine but had been assessed as needing 24 hour care.

The caring needs that you're describing would fall into the residential category of elderly mental impairment - you're basically criticising your MIL for not doing a job which would fall due to a team of people to support. There could well be other things occurring which she doesn't feel comfortable sharing like continence issues.

In my family, it was the other way round, in that I felt one parent needed to be in a home while their partner insisted they could cope (while also getting stressed, snappy and frustrated). Social workers became involved and in the end my parent was sectioned, as they couldn't understand that they were a danger to themselves.

The care home hasn't been the disaster that I feared. My parent still has capacity for many decisions but no insight into their disease and they do benefit from more social interaction.