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Elderly parents

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

157 replies

callmybluff · 28/12/2022 00:05

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.

OP posts:
EmmaAgain22 · 28/12/2022 03:01

I find it odd she won't pay for more carer hours but will pay for a home.

I can see her POV re the home tbh. It must be terrible for her.

but maybe get her to max the carer hours - point out the cost oddity with what she will pay for. Respite care is a great idea - if he likes it he might want to stay.

one of my friends persuaded her mum into a home and the mum was furious but then ended up much happier in the home, she had dementia too.

toomuchlaundry · 28/12/2022 01:52

Living with someone with dementia is very different to visiting someone with dementia.

Is there anyway they can move closer to you?

determinedtomakethiswork · 28/12/2022 01:49

Do they have a local day centre that he could go to?

clairea123 · 28/12/2022 01:46

Your mil can’t be forced to take on the carers role though if she doesn’t want to do it. it sounds like your FIL would not be able to live alone, so you are in effect relying on mil to provide care she doesn’t want to- and doesn’t have to. I also think the lived experience of living with someone with dementia can effect the cognition of the person providing the care: it is also totally relentless and completely different to spending the day with the person with dementia. To some extent, she has lost her future, her life partner and the relationship she enjoyed. She is no doubt going through her own anticipatory grief.

i would advise on getting in touch with Alzheimer’s uk who may be able to arrange a nurse to come to speak about the support available, and how best to manage fil’s behaviour. They would be the experts. Out of interest, if carers are a waste of money, does she realise the massive cost of residential care? Perhaps this would suit them as your mil could focus on visiting or taking him out, rather than the daily demands of care.

newnamequickly · 28/12/2022 01:13

She needs a carers assessment. Contact your GP practice and ask for the Carer support person.

This will help you understand and identify what she's struggling with, why she's struggling and if she's willing to continue.

BouncingWorms · 28/12/2022 01:02

What's she nagging him to do? And would she get someone in to do that? Cleaning etc.
Can he go to a regular day care centre? Not a home, no one coming into their home, but mil doesn't have to do full time just evenings and weekends.

Moving again obviously isn't ideal, but have you looked into an assisted living / halfway house that they could both move into and the care could be increased as and when needed, it might be more agreable to fil than a home.

For respite, can mil go on holiday with a combination of yourselves and carers babysitting fil so he stays at home if that's less unsettling for him.

Caring is hard and constant, even if just companionship. And she's now also expected to do everything that they used to both do. If she's saying she can't do it, you need to believe that. If the carers that are coming aren't making her life easier then it's not going to help much to increase the hours, a different sort of care package is needed.

Itisbetter · 28/12/2022 00:22

I don’t think any of you can unilaterally decide he goes into a home, if he still has capacity. I think the key is to help MIL to feel she’s doing a good job and reassure her that there is a plan she can bear when things get harder. Telling someone to be kinder when they are lashing out is unhelpful and shaming and it’s really hard to do well when you feel ashamed. Could you not take turns to stay at the weekend a few times a month and provide respite and an ear.

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