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.

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

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

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.

@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.

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).

-do you know if he's washing himself properly or just masking it?? (A lot of proud men and women do this!)

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

-he gets anxious therefore requiring constant reassurance.

Who maintains the house? Sorts out all the bills?

Sorry, by 'low' I meant from a SS threshold point of view, not from a 'what it's like to live with' aspect. He did actually have a care assessment done a while ago when MIL was in hospital for a time, and they suggested that he needed someone to come in for 15 minutes twice a day to give him medicine and cook him meals. That was a very long way from the care that he actually needed (and that we arranged at the time).

In a weird way it would be easier if MIL were out of the picture, as there would then be no option but to buy in full time care of some type. We have stayed there for a while previously, and we will do again (or have him to us) for respite, but it's not sustainable on a regular basis as we both work and it's too far to commute, so it can only be when we're able to take leave. I don't think either of them would accept him coming to live with us, and if he did we'd need to move house to accommodate both him and a live-in carer, as we're out of the house most of the time. Someone suggested that we arrange for him to go to daycare once a week, but actually MIL wouldn't accept that level of interefence in their lives - when we did try to set one thing up which she'd said might be helpful (a cleaner), she promptly cancelled it again. We've been urging her to increase the amount of bought-in care, but she's very resistant. They did start going to a local dementia support session, but she said it wasn't very good and so they stopped going. Sorry, I know this all sounds like I'm making excuses, but she genuinely can be quite a hard person to help.

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.

This

Sorry, I know this all sounds like I'm making excuses, but she genuinely can be quite a hard person to help

She's told you what she wants OP, so yes, you're making excuses.

A complex social services assessment takes into account exactly what I've listed.
If they assessed him now and if MIL isn't coping they would suggest 24 hour care. Having a live in carer would probably be no good as your FIL will probably still want your MiL to do things.
She will still have to do all the mental load of washing, meal prep etc and prep everything for the carers as they only do so much as they are a guest in someone's home.

I've dealt with this for the past 20odd years personally with grandparents (my mother being an only child and being very dependent on us) and I've been a nurse for 13 years, I work in the community now and have worked in the hospital. I see both sides of the picture.. carer stress... normally the carers are in worse health than their family members they are caring for!
I admire people who look after their relatives/partners 24/7 and there is usually a breaking point. It sounds like this is it! I know I couldn't do it... and so do you!
A care may be best for him as his needs will be met with no stress from his carers and his wife can spend as much time with him as his wife (care homes normally provide meals for spouses when they visit etc)

Well actually she hasn't. She's said that she wants some respite, which we are supportive of. She's said she's finding it hard to cope, which we recognise and have tried to suggest increasing care at home so that she has more time to herself, which she rejects. She hasn't said that she wants FIL to go into a home, but if that's her feeling (which I think it probably is), then this is something that he doesnt want and as things stand would need to happen without his consent. I've read lots of other threads on here where posters have said that you can't just 'put' someone in a home.

Your OP said MIL basically wants FIL to go into a home and you don't think he is ready for that.
No they can't put people in a home against their wishes if they have full capacity to make them decisions. They mental capacity assessment and a deprivations of liberty assessment.

Technically my grandfather when to live in a care home against his wishes and constantly asks to go home. He doesn't know where home is, he has no concept of time, who we are, refuses a lot of care interventions, didn't like people in his home, but then in a conscious state of anxiety if he was ever alone. We cared for him at home for 5 years with 4 times per day carers and twice daily visits from us as he hated anyone staying with him and only let my mam and me do anything for him (never my dad or sister).
Prior to this my grandfather was a carer for my Nanna who has mental health problems, mixed arthritis and then developed vascular dementia, carers 4 times per day and twice daily visits from us and he had terrible carer stress with all of that support. We couldn't go on holiday, if we did it had to be separately as every time she went into respite she would end up poorly in hospital as she was stressed with any change (even my now husband went to see her in hospital when we were on holiday when he was 15 as we couldn't get back straight away) Same when my grandfather was living at home. My mam had to work part time to support him and I worked shifts and went on my days off.
Our commitments had to come second to them.
Believe you me, I know what I'm talking about, I've lived with it and I see and support families a lot in my work.
Your MIL is struggling!

It's right there in your first post!

Yes, I'm inferring that she wants him to go into a home permanently but she hasn't actually spelled that out. I totally accept that at some point he is likely to need to go into a home. At the moment though, he's at a stage where he gets a lot of pleasure from his own home, from long country walks, from visiting family, from being surrounded by his books and his pictures and his stuff, from eating out or going to some local cultural events with support, etc etc. I realise that care homes aren't prisons and that some of that could continue - but I do fear that moving into a home would curtail quite a lot of the pleasures in his life, and may accelerate his inevitable decline. Equally, I recognise that having him at home is currently curtailing a lot of MIL's enjoyment in life. That's why it's so hard.

It does sound like a home is the way to go. Your MIL sounds like she wants that, without necessarily saying that, maybe because she doesn’t want to look bad or uncaring. You can of course put someone in a home if they are not deemed competent (been there with my mum, who didn’t want to go but ultimately had no choice as it was getting dangerous to leave her). As he doesn’t want to go - is he competent? I would be getting that assessed as a starting point.

Well you can if you say you will no longer provide care. If a needs assessment deems that he is not safe without 24/7 care and you won't provide it, he has no choice.

Has he had an assessment?

His occasional enjoyment of stuff does not outweigh the grinding weight of providing 24/7 care. She is unhappy and she's making him unhappy. The situation cannot continue.

But who does all those things for him/with him Op? He can't do them on his own, can he?

I honestly think you are determined not to listen and think you know best. I can see why MIL can't tell you how she really feels.

You are saying these things because YOU don't want him to go into a home because YOU think you know best.

Whilst being 3 hours away and not really having to worry about it. You are a sucky DIL

Well HE could opt to pay for more support. She doesn’t get to decide he can’t be cared for in his own home. empower him (if it possible) to make his own choice what to do with his money and how he wants to live.

Wow, harsh! But perhaps fair. I was about to say that reading this thread has really helped to crystallise my view that things can't continue and that perhaps a home is the only option. I guess we were hoping that external care at home might help to provide the support and distance that MIL needs while allowing FIL to continue doing the things he enjoys, but I'm now thinking sadly perhaps not.

It's her home too.

And just to say that if you're in a home, you can go out for walks, go out for lunch, go to concerts, go and visit family. You can even go away overnight to stay with family.

I really think you need to speak to some homes - I don't know what you have in your head but my experience is nothing like you seem to imagine it!

What @Clymene has said is true. I work bank shifts in a nursing home and every day we have residents going out and doing different things, whether it's with family members, friends or the activity co ordinator.
As long as they have their medication with them and if they have continence issues (spare continence wear and clothes) and obviously someone taking responsibility for them they can come and go as they please . It isn't a prison! Some residents go on holiday or stay at relatives homes for a few days as well.
Unfortunately taking my grandfather anywhere would seriously distress him and we had to stop taking him out a few years ago as even now you can't get him in a lift to go onto a different floor.
Prior to this it was encouraged by the care home to keep him involved in the community as much as possible.

My Mum had really severe dementia but was in complete denial and refused all help. Although I begged social services, the GP, and the memory clinic for help, Mum was very good at hiding how bad things were and no-one believed me for a couple of years that she was hallucinating constantly, ringing me at 3 am screaming that a man was pulling the rings off her fingers etc. When I was finally able to get the social worker to assess her, she didn't agree that Mum needed help because she sounded very rational when she responded to questions. At least 95% of what she said was completely untrue but no-one believed me because they didn't spend enough time with her to see how bad things were and didn't know enough about her background or how she lived on a day to day basis. It was only when she was admitted to hospital with a major nosebleed that the doctors realised she was really in trouble and she went into a care home once she had recovered physically. .

I think things may not appear to be nearly as bad to you as they really are, OP, because it's very common for people with dementia to still have enough understanding to be able to cover up what's happening to them, and I really think you should acknowledge that your Mum will be seeing a very different side to things than what you see when you visit. Dementia is such a terrible illness to cope with and I really feel for you with what you're going through and what lies ahead.

@Clymene It's her home too.

Well yes but she doesn’t get to pop him in a home just because she doesn’t fancy caring for him and won’t let anyone else. Being old and sick doesn’t mean you cease to own your property. Realistically the house may have to be sold to pay for care anyway.

She's not 'popping him in a home'. She's crying out for help. She isn't coping. She's shouting at him and making him anxious. The current situation is untenable.

When you have two elderly people who live together and one of them has massive care needs, you have to consider what is best for both of them.

He needs to be safe and cared for 24/7. For whatever reason, she has said she is no longer capable of doing that.

I've watched my mum care for my dad until it nearly killed her. He died a couple of months ago but if he hadn't, they had both agreed it was time for him to go into care. She couldn't do it any longer.

It is not a decision anyone makes on a whim, believe me.