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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:
Flipthefrugal · 31/12/2022 14:11

mrsjackrussell · 28/12/2022 08:52

Can u just say that i have cared for people with dementia and that you are only seeing a snapshot of their lives.

Dementia can get worse at certain times of the day and maybe he puts on a good side when you visit. I have seen this happening.

Also it is different for your mil caring for her husband as she is probably frightened and grieving and may need help as much as he does.

Dementia is just as awful for relatives.

This!
Also if someone has good social skills they can " front" really well.
I work in DME.
People hide issues usually until there is a crisis and it all comes tumbling down.
Your FIl is a vulnerable adult.
I would inform Gp and SS.
Who has POA?

IthinkIsawahairbrushbackthere · 31/12/2022 14:52

@callmybluff I understand why my initial post was unreasonable and I've changed my position

I think you are getting a bit of a rough ride. It is quite clear that you have changed your position and I think it is admirable of you to have done so. Also I don't think it is unreasonable to say that someone is not a natural carer. In our family my late aunt had little patience with family members who required emotional support - a role that my mum willingly filled. However when the elderly relative required care on a practical level she dropped her job and moved them in to live with her for as long as it took. My mum was always full of admiration for her and always said that she could never have done what my aunt did.

However when mum herself needed care she refused to acknowledge she needed care and all she required was "a little bit of help" and demanded I supplied it. I found personal care really really hard and struggled so much with that aspect. I have so much sympathy for your MiL!

I think you are doing a great job advocating for your FiL.

verdantverdure · 31/12/2022 17:18

callmybluff · 31/12/2022 10:46

Agree, and we have now already done so.

Good. Because you and MIL basically agree on one point. She can't do it any more.

Far better to accept the reality of FIL's needs now than have to deal with a crisis caused by minimising and denial later.

callmybluff · 31/12/2022 17:27

Thanks @IthinkIsawahairbrushbackthere . And also sorry for everyone who's going through or who has gone through tough times with family.

To answer a question, MIL has POA, with DH as reserve if MIL loses capacity. .

OP posts:
C8H10N4O2 · 31/12/2022 18:08

FWIW we absolutely think that MIL needs more of a break - for months we've been pleading with her to increase the carer hours so that she gets more time off (the carer just comes for a couple of hours a week atm), but she's been very unwilling to do so

I think you have done the right thing now agreeing with her that its time to look into alternative care and next steps would be to find candidate places to visit - if you can get local recommendations so much the better. If he is diagnosed and referred to a memory clinic or similar service the staff there may well have some useful insights. Local charities providing day centre type support in the area will often also have connections and intel.

I've quoted from your post above for anyone else in similar position who may be reading, because it really jumped out at me.
When you are at your wits end caring for someone and you tell your family what you need, it is absolutely destroying to have the family keep insisting they know better than you and that all you really need is X, Y or Z. That they know best what the person they only visit needs.

When a full time carer in this situation tells you what they need it is because they know best what they need. Families rarely try to overrule in this way with with bad intent but it happens very often because those not providing the 24*7 part of the care just don't see the reality of it, or grasp what its like caring for someone who is disappearing before your eyes. Plus instinctively families don't want to see that level of change and will be in denial and convinced that just X or just Y will be enough. There is a point at which professional help can actually improve the quality of life and progress of someone with failing health or faculties more than well meaning but exhausted family carers.

callmybluff · 31/12/2022 18:19

I totally see that, but I think it's also true that the person in the caring role doesn't necessarily know what they want (understandably). MIL has only recently started to voice her feelings about either a respite break or a permanent move to a home. Prior to that she was clearly finding things difficult but none of the suggestions we made were attractive. She wasn't keen on FIL staying overnight with family because that might be unsettling for him, and she didn't want carers to come in because she didn't like having people in the house. She liked having family come to spend time with them, but for all the reasons given above, that was only possible on some weekends. All the time, things were getting more and more difficult between them. I don't want to give the impression that she's been asking for him to go into a home for ages and we've just been saying no. It's been more like there's no solution that seemed helpful, though it's become gradually more obvious that she's thinking about residential care.

OP posts:
NoShrunking · 31/12/2022 18:34

I've got no idea where you live but I saw this in the Guardian yesterday and was v impressed, not least because it's v close to where my MIL with dementia lives, although I don't think she'll be needing somewhere like this for a bit. But when she does, it seems amazing - and gets rid of so many of the worries that have been raised on this thread.

www.theguardian.com/society/2022/dec/30/dementia-village-in-warwick-is-a-pioneer-in-person-centred-care

The people who run it do seem to have other homes as well though.

And yes, people don't always know what they want and it's not always possible if what they really want is their old lives back, somehow. Old age is a one way street and I am not sure I'm going to cope with that well, so I am sympathetic.

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