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.

How often are you going to help with your father in law?? How often are you going to support your mother in law?
Have you ever stayed over to help?
Does he get up and wander through the night? He is unable to be left alone?
You sound as though your judging your poor mother in law and your popping in.

Your mother in law is telling you she is struggling and not coping ( she hasn't said these words directly but from what your saying this is what it sounds like)

It also sounds that's your FIL doesn't have full capacity as he cannot be left alone etc therefore he doesn't understand that whole complexity of what care he needs.
My grandfather has had Alzheimer's for 13 years and still asks to go home, this started when he was in his own home! (he doesn't know who we are, where his home is etc) other people visiting may think that he is plausible and that he's not that bad as he can go to the toilet himself.

However refuses to get washed, changes his clothes, doesn't know when it's meal times.

It is extremely hard to look after someone with dementia never mind living with them 24/7 and caring for them with no support whatsoever.

It sounds as if your MIL is struggling to do everything in the house now that your FIL is no longer able. It is obviously difficult to have to increase the amount of work you do when you are getting old and less physically able than before. Perhaps getting a cleaner and/or gardener would help her.
Is your FIL claiming Attendance Allowance? It sounds as if he would be eligible and that would help pay for carers or a cleaner if your MIL doesn't want to spend their money on this.

It seems to be that moving him to a good care home world be better all round. Moving him earlier rather than later world give him more ability to adapt to the change. He would no longer be verbally abused. He might have a better relationship with his wife if she wasn't stressed by caring for him.

He has the capacity to state a preference for staying in his own home, but does he really have the capacity to make that a safe option? Or does that rely on others (MIL) spending 24/7 keeping an eye on him? It's not fair to put that job into her, when you and your partner are not willing to take it on yourselves.

Sorry to hear this, sounds a v difficult situation.

Try explaining to you MIL that the carers are vital and that paying for companionship is not a waste , as companionship is necessary for someone with dementia and can keep them stimulated and happier.

I totally take what you've said on the chin.

Actually I don't think you've listened to PP's at all (or your MIL).
Your MIL has flat out said she is not coping. She has said she wants him in a home, at least a couple of weeks respite to begin with. You have seen yourself that she is not coping.
If it's as simple as "be kind" as he's just "a little bit forgetful", then easy solved- he can live with you.
You can not force someone to be a carer. And if you do, her irritability with him is only going to get worse, and her stress is going to get worse. We've actually had residents at work admitted to us (aged care), because their carer (ie partner or child) has had a full on breakdown and been hospitalised, leaving the person with dementia no where to go except into care. Do you really want that level of stress and trauma, for either of them?

You need to seek a couple of weeks of residential respite care for him. Then see how MIL feels after that. She may be willing to keep him at home a bit longer, after she's had a break. Or, she might realise how much she really needs him in care. He might enjoy it too!

I don't understand why mil is reluctant to try out more care in the home first?

How will the care home work if they’ve only just moved? Would they put a charge against the house or would the expectation be that she releases equity by moving again?

I know more about this exact setup than anyone wants to. This helped me:

1. MIL isn’t going to step up.
2. Doesn’t matter why. At some point FIL will be at risk.
3. If he’s at the stage where he can’t be left alone for long, a care home is a perfectly fair call.
4. She, not you, has to put up with dementia 24/7.
5. But for now a Live-in carer takes the strain - not drop in carers.
6. Try and persuade her to take 24/7 care for 6 months and then reassess.
7. She might be going senile herself. She’ll certainly feel as though she is.
8. Either way, this isn’t ‘normal’ old age - act accordingly. What’s the best outcome for the most people?
9. If MIL’s quality of life would be improved- and you can cope with the double burden of managing a care home resident and her at home - you know already.
10. Don’t forget that the second FIL is dealt with, you’ll have MIL’s own care needs to start coping with.

You can be as judgy about MIL as you like - and a lot of that will be fair - but just remember she’s in a hideous place and has been for some time. She might be ill too.

MIL probably wants fun in her old age, and that’s as important as FIL needing care.

Quality of life matters for everyone.

@Supersimkin2 she doesn't want the live in care though, which is the bit I don't get.

She potrays FiL's dementia as far worse than others observe it.

If I had tried to tell people what my mum was like no one would have believed me. She could put on a real show of being bright and involved in everything that was going on around her but then when everyone had gone home it was just me she would be confused, cross, exhausted.

This is not meant in any way as a criticism of you but unless you have actually been a carer you might not recognise what is happening, how much your MiL has to do to keep FiL happy/engaged.

It may seem from the outside that she is not carrying a particularly heavy load in caring for him but it is impossible for you to know the strain it has on her. It is really much better for her to make a plan for the future now rather than for a crisis in 6/12/18 months when she needs someone else to take over.

You can get SS to do an emergency intervention. MIL doesn’t want anything - but she doesn’t have the choice any more.

Use live-in as a lead up to care home, which it is anyway.

She doesn't want live in care because she doesn't see the value and she hates having people in her house. She got a cleaner for a while and then sacked them because she thought it was a waste of money paying for someone to do something she could perfectly well do herself. There are no signs that she's losing cognitive ability.

I do hear you, honestly I do. @Supersimkin2 that is such a useful summary of the situation. I think we do need to support MIL urgently to have a period of respite care, and to use that as an opportunity to explore care homes. Yes, we could have FIL to stay with us for respite, and we've offered to do that, but we can't do it straight away as we can only take leave from work at certain times, and I think the situation is more urgent than that.

If one person still resides in the home, then it cannot be touched to pay for care home fees.

He needs a social work care assessment.

His needs actually seem quite low from what you've described. Most councils won't even fund a home until the person is having full time daycare and numerous at home visits a day.

Daycare would be the best first step.

Maybe you need to send FIL for a couple of weeks of respite and see how it goes?

They both might be happier and the situation could become permanent.

Also, stop with the ‘choices’ schtick. MIL isn’t caring - ok, but the result is that she doesn’t get to stop anyone else looking after FIL. It’s his home too. Make that clear.

MIL wants the impossible - her husband back. Once you get that through to her, see what happens. If she’s still intransigent, look after yourself for a fortnight and ignore them. Day 15, ring SS.

This is not true and really unhelpful.

My nan has recently gone into a specialist dementia care home because she has lost her mobility at nearly 90 after the last of many falls 5 months ago. My grandad could not care for her physically and had been dealing with a lot of dementia symptoms secretly for years.

They are both generally much happier and my nan gets a lot of social interaction from the staff (and us, her family when we visit regularly of course) and some of the other residents. Some are far worse than her but that's just the nature of where she is.

You need to listen to your MIL op. She knows best what she and her husband need. She will likely be feeling obligated to keep him at home but unless your willing to take on the caring responsibilities yourselves you should not be encouraging this.

Also, stop with the ‘choices’ schtick. MIL isn’t caring - ok, but the result is that she doesn’t get to stop anyone else looking after FIL. It’s his home too. Make that clear.

agree

It's potentially not nice in many ways.

I see it as a balance of fairness - how many lives are spoiled if the person refuses to go?

At some point, someone's needs are going to trump someone else's.

My nans last fall in some ways was a blessing.
She was in hospital for 12 weeks recovering and whilst they sorted out care.
It enabled my grandad to have some proper sleep and rest (those with dementia are often up around the clock have you considered this op? )

With a clear head he could see the right way forward was for her to have proper care, where she was safe and he could rest easy knowing this and he can visit her daily. They even have lunch together every day in the home and sometimes the carers enable them to go over to the pub across the road together. They are happy

Spending time with someone who has dementia is exhausting. Even just spending a couple of hours with my Gran drained me. Living with them must be so difficult. I think you need to speak to MIL and find out how she is coping.

I agree with those who say you really don't understand the strain of caring for someone with dementia24/7 unless you have lived it. It's just not the same coming in for a few hours.

Your MIL is probably still grieving for the husband she is losing right in front of her eyes, and yes she is stressed and snapping. I have done the same with my father because I'm exhausted mentally and physically and trying to get him to do basic tasks is such an effort, and he fights us on everything.

My sister comes to visit for a few hours a week, and he seems in better form, and on good behaviour. She can get him to do things we can't and seems to think we are exaggerating how bad he can be. She doesn't see him during the night, or late in the evening sometimes when he gets tired and unco-operative, it's so different when you are living it all day everyday. Even a few hours respite is not enough to switch off.

Give your MIL some empathy for the fact that she is living with a horrible situation. I wouldn't wish this stuff on anybody.

To answer a couple of questions, I think a SS assessment would probably say that his needs are fairly 'low'. He doesn't wander, he's rarely up at night, he's not incontinent. He needs help with selecting clothes but generally not with washing himself or putting clothes on. He needs help with his medication. He's safe to be left for an hour or so (not much longer, as he doesn't have much sense of time and so gets anxious). He can't drive any more, though he can walk to the shops and back. He could make himself a sandwich but not a meal.

I realise that all of these things are 'yet', and that things can and will deteriorate. And that the fact that his needs are 'low' doesn't mean that it's easy to care for him day in, day out. It's also irrelevant I think from a funding POV - they're too well-off to qualify for anything other than attendance allowance I should think.

The lack of being able to tell time was one of the first signs of dementia for mum.
Shed try and get my dad up at 4am most mornings either asking what he wanted for tea or should she call a taxi if he wanted to go out for a meal.
She’d been up cleaning prior to this and by bed time, she was trying to make breakfast.
my dad was absolutely worn out.

I was “carer” for my ExH for 20 years, after he developed a severe and enduring mental illness 10 years into our marriage.
When you marry it is on basis of equal partnership and responsibilities. Yes, you expect that from time to time one of you will have to step up into a “ parent” role to support the other in times of crisis like illness, bereavement, stress etc. But there is expectations that this is temporary and hope that over time they’ll become the independent person they were before.
when someone gets a mental illness they won’t recover from, slowly that burden on the other partner of constantly being in “parent” mode to a partner who now needs “parenting”, destroys the previous bonds and dynamics of the relationship. There is evidence that even pheromones change and switch off sexual attraction.

it is unrelenting, day and night. It can have a major impact on sleep!for the carer. The carer will be taking on more and more of the burden of just living - financial decisions being made on her own, getting trades in for jobs, remembering all domestic chores, taking full responsibility for his life as well as hers. Her stress will be rising, anxiety , irritability with it.

the “carer” is forced into a role of “caring” whether they are skilled or good at it or not at the same time they’re grieving for the adult relationship they’ve lost. I felt resentment, irritation, and impatience. I then had to cope with the guilt of those feelings and not being able to express to anyone these negative feelings. My self esteem was destroyed. I ended up with 3 serious bought of depression myself before I decided I had to live separately from him and divorce. I do still miss him and care about him. But, perhaps not unsurprisingly he is ok As he now gets way more support than he did when the nhs just dumped caring on me.

you are being naïve in thinking she should “care” for him and be kinder. Her husband is vanishing. She is being left to parent a man she cannot relate to more and more.

Do both of them a big favour, and tell her it is ok to feel and act the way she does. But it is toxic for both of them, and they now need to consider how best to live so they can begin the slow process of emotional seperation. Hate to use a woken Paltrow term, but a conscious uncoupling. By living more seperate lives they can restore their relationship as adults, and not with her being forced to parent him. It will make them both happier.

how you do that seperation needs to be their decision, it may need to be a gradual step change. Paying for significant day time care now,then a home at this point etc. But even making plans now with them, and telling her she cannot Continue indefinitely as they are as they are both suffering by trying, will allow her to see her own future more positively and reduce her stress