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

Maybe it is actually that bad.

If she doesn't want to care for him that's her decision.

Caring for someone with dementia is really really hard.

She's telling you a day visit won't work for her, she's said 1/2 weeks respite. You've already said you can't have him full time because of work commitments and house size. You have your reasons and so does she. She's not difficult to help, she's telling you without telling you she doesn't want to do this anymore.

Start looking at homes.

From what you describe his needs aren't low! Your purely looking at physical care needs as in getting dressed and going to the toilet.

As I've said before my granda has had Alzheimer's for 13 years, goes to and from the toilet (has occasional incontinence, sometimes doesn't wipes properly so soiled underwear, then disagrees if a carer tries to assist with changing).
Your MIL has to do all the prompts and thinking for him
-can't leave him unattended for longer than an hour.... how does she get any time to herself? Shopping? See her friends?

• selecting clothes etc (as well as all the washing/ironing putting everything away).

• all meals bar the odd sandwich: all meal Prep etc.
• all medications and medication prompts

Who maintains the house? Sorts out all the bills?

@callmybluff I'd suggest you or your DH go and stay with FIL for a few weeks and give MIL a good rest elsewhere with another relative.

Then with your more accurate understanding of what it's like to live with someone with dementia 24/7 you'll be able to make a suitable plan going forward.

About three weeks should do it.

My husband had Parkinsons which in the end resulted in him being paranoid (he thought I was trying to kill him), having delusions and generally bearing not the tiniest resemblance to my partner.

So what this woman is going through is very difficult to describe to anyone outside of the situation. I was frankly scared of my OH in the end; and even if that had not been the case, I was essentially living with a stranger - a man who looked like my OH, but was not. It also impacted negatively on his sexual behaviour, as the socially niceties surrounding sexual relations went out of the window. No-one knew all this - and still do not know following his death. I want to preserve others' good memories of him so do not tell anyone.

So ..... there may be things that your MIL is going through but cannot talk about. To have someone with whom you have had an intimate relationship change for the worse is frankly frightening.

I do not think it will help to tell her she could be kinder to him .... she may be trying to keep him at arm's length for good reason. I know that I have to live with the guilt of not being as kind as I might have wished, as I was trying to preserve my safety.

It is a very difficult situation, but criticising MIL is not the route to go. If anyone had done this to me when we were going through this I would have folded up completely.

I used to work with families dealing with a relative with dementia, and there is always this difficult stage when the patient has capacity and refuses any sort of care; and there is no easy answer for anyone. Does your FIL have a formal diagnosis?

www.alzheimers.org.uk ....... Alzheimers Society and Age Concern can be very helpful in these situations.

I would suggest, OP, that you make arrangements to have FIL spend one day a week in daytime respite care to give mum a break.

I would also speak to his GP about an assessment by the Community Mental Health Team.

Then depending on the results, and the advice you get, you can make further plans.

HTH

Maybe his dementia is as bad as she says. Look up "Host Mode"

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

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 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.

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.

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

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.

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

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.

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.

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.

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.

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

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 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.

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

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.