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.

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.

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.

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.

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.

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

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

Is there anyway they can move closer to you?

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.

You’re not the one with him 24/7 so you really don’t have a clue how severe he really is, or how much strain it’s putting on her. If you want him at home, why don’t you two move in and take over all of his care?

Unless you are planing to move in and live with them and take over all of FIL’s carer needs you need to be more supportive of your MIL. She doesn’t want to be a carer of your FIL and has made other suggestions. It’s really not fair to ignore her needs and wants and decide for her how she is going to live her life. She’s angry and can’t manage, so insisting that FIL is generally fine and all she has to do is be nicer is pretty mean and dismissive of her.

Actually, I'm going to pull back a bit on the carer hours thing
if she feels it doesn't benefit her, it's pointless

I would look at a home. I realise your FIL has to agree but what's the alternative, really.

I can sympathise with her "making it sound worse than it is". I probably make mum sound much less healthy than she is because I can't cope with it.

Because they're not relieving her of the burden.

In couples, external support is as much about relieving the burden on the carer as it is on the person who needs caring for.

OP - I'm afraid I agree that you really should not be emotionally blackmailing your MIL into continuing to care for your FIL. It's clear she's not coping and it sounds pretty miserable for both of them at the moment.

Please understand your MIL copes 24/7 with him.
My dad was the same with my mum. He was frustrated with her decline and she was argumentative and aggressive with him occasionally.
The upshot is that he’s tried to hide how bad she was from us as a family.

When he died quite suddenly in sept, mum had to go into a care home and we then discovered just how ill she really is.

In these short months, she’s turned on me, saying awful things about both me and dad. She’s accusatory and paranoid.

The staff are amazing and so supportive of me and I take my hat off to them.

Your mil could well be dealing with far more than she lets on.
It’s a very difficult situation x x

Caring for someone is the hardest thing you can do. I am in awe of people who do it. It is constant and exhausting. I would listen to what MIL says she will know the true picture of what he can and can’t do.
telling her to be kinder is not going to help anything. Why don’t you both take 2 weeks leave and MIL can take a break somewhere else and you can care for him so you know the true picture yourself.
Respite is also a good option as you can get a feel for a care home and if you like a particular one.

It sounds like you're prioritising your father's wishes and wants over your MIL's needs and mental health. She sounds burned out and like she's not coping. She knows better than you how bad he is as she lives with him. I'd suggest she start with an independent assessment that takes both of their needs into account. Your MIL and her needs are as important as your fathers and it sounds like she's being totally ignored in this.

A good friend of mine was trying to care for her husband. They had been together for 50 years. She had the support of her 4 sons but eventually after her husband became violent repeatedly, he was out in a home. I.am.nit saying your father in law will be like this,just that the caring role nearly broke my friend. She tried to keep.the extent of how bad things were from.people. her sweet husband of 50 years sometimes flipped. When visitors were there he would 'behave'.
Before the deterioration was so bad she reluctantly organised for him to go to a day centre it gave her a break.
What I am trying to say is the picture u get abd the day to day reality for them.both might not be the same. Also, is therea possibility that she is angry ? It's no ones fault but she may feel that she didn't sign up for this and br mourning the man she lived with. Hope u get some resolution.

Would it not be better to settle him into a good home, while he has the capacity to manage the move. Their relationship may well improve if she is visiting daily rather than caring for him.

I’ve watched my dp’s difficult relationship deteriorate badly under the strain of care, to the point where there was emotional and verbal abuse. Both my dps had very fixed ideas about not being “abandoned” in homes, “put into” care, and about marriage being “‘til death do us part”. It was a horrible way to end up.

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.

What do you do in this situation?

Listen to the person being forced into a carers role? It's not up to you. He can't be left alone and your mil doesn't want to look after him the way he needs. She might not want carers trooping in and out all the time.

Op, being a full time carer is an exhausting, sometimes soul-destroying job. Very few people actively sign up for it but find themselves in that position because someone they love becomes ill. Your MIL is telling you she isn't coping and while yes, a home might cause a deterioration in your FIL, I honestly don't think it's up to MIL to decide what she wants for her future and her life.

I would suggest a couple of things:

Revisit the idea of more carer support (E.g daily) and then look at getting a handy person to do jobs your FIL can't do

Explore assisted living/sheltered housing, particularly places that are attached to units that can provide full nursing care. If your PILs have funds, there are some really nice places that also offer social activities/communist areas etc but also the increasing support your FIL will need

But at the end of the day, it really is up to your MIL and FIL to do what is best for them. If both are in agreement that a home is the preferred option, then that's their decision to make.

A home is a lonely place if you still have capacity.

Urgh, I meant to say: I honestly DO think it's up to MIL to decide what she wants for her future and her life.

Two care homes where we used to live have cottages in the grounds, which are sold to residents. They can then use the facilities and services , without actually being in full time residential care. It is possible to move into nursing care when appropriate.

A friend whose parents were very similar to your in laws found it to be a good solution, they were able to get away from each other, and had separate friends and activités (lots of things like outings, card games etc available). Another friend is also in one of the cottages now, when she need assisted living, it seems to work well.

A day care centre could be the right halfway house. Things might not be as they seem when you aren't around either

Just a thought, if she thinks carers are too much, who does she think is paying for the residential care? For state support he would need to be eligible both from a savings point of view but also an assessment which it doesnt sound like he would pass.

This is really untrue in my experience. My mother was a nicer and more fulfilled person during her ten years in her ‘home’ than when she was lonely and alone. All ( most) of the residents had ‘capacity’ although that’s not a hard and fast category in real life. Perhaps it would be better to say that they all had varying levels of capacity in different areas.

I'd be trying to push for a care Home.