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 hope not. We had to call the police when an elderly relative with dementia just got completely confused and was found 4 miles away with no idea where he was or how to get home.

I don't think she has but as you said I hope not. I'm glad that your relative was found. What a terrifying situation. That's always been one of my biggest fears when caring for a relative with dementia and it's so common too.

It was awful. And then there was driving down the hard shoulder in the dark with no lights on before we hid his keys. Dementia is a cruel and devastating disease

I would be astonished if he is doing that alone.

even if he is, his wife's life can't be ruined so he can continue with it.

the other thing is if he has full capacity, even going for long walks, his wife might decide it's time to get divorced. An old school friend has had this - his father got way past the point of capacity and his mum divorced him. The poor chap got dementia - or Alzheimers? - in his 60s, his wife was a lot younger and began dating as soon as he was out of the house. Married again as soon as the divorce came through.

Plenty of people at MILs care home get taken out. Some go to their DC for Sunday lunch virtually every week.

So in the OP's position you'd have him at yours and take the burden off your MIL then?

No, he doesn't go for long walks alone - he'll go with MIL, or DH takes him at the weekend, or he goes with a local community group.

A befriender could help with the chatting but whatever care and help is in place someone still has to do the mental load of managing it all.

I honestly think you need to go and do a few weeks of 24/7 caring for FIL yourself before you call anyone pathologically unsuited, and then remember how much younger you are than the person you want to continue this task until one of them dies.

The person who never gets a break from his needs knows better than you.

OK, I do think I've accepted that my initial post was unfair, and that I need to listen to MIL's experience without judgment. I do also think though that it's not totally unreasonable to suggest that some people are better suited to caring than others. Surely some people are naturally better carers than others, just as some people are naturally better teachers or managers or whatever. MIL is a never-sits-still, quite impatient person - that's often a very positive quality, as it means that she's very active and amazing at getting stuff done - but I do think it means that she finds caring for FIL even harder than some others might in the same situation. I don't think that's an evil thing to say - she quite often says the same thing herself.

As for spending a few weeks there myself, the reality is that it's just not possible. A few weeks is all the annual leave I get a year, and I don't think it would be fair on my kids to tell them I'm not spending any time with them this year, or on my own parents (including a mother with the likely beginnings of dementia) that I'm not going to be spending any time with them either. I do understand the point that you're making - that I can't judge MIL without walking in her shoes - and this thread has really helped me to accept that - but in practical terms I can't actually go and walk in her shoes for any length of time without either leaving my job or neglecting my other caring commitments.

But MIL is expected to make all the personal sacrifice so that you don't have to? Can you look at taking a few months to a year off work as compassionate leave? Then you can give MIL a real break, see what's really going on, sort something more suitable for your father and spend all the time you need with other family members.

I know it's a tough position to be in but your posts read to me like it's all about what your father wants and whats best for him. MIL is equally important.

No, I really can't. Well I could, yes, but I'm afraid I'm not going to. DH and I have both started new jobs in the last year, and we're both just at the stage of finally being in the jobs we've always really wanted to do (quite apart from having a mortgage to pay). It would be pretty career-wrecking for either of us to take a year off work now, if it's even contractually possible. Nor do I want either of us to live apart from our kids for a few months. And what about my own parents - I take a year off work to care for PIL and then find in a year's time that my own parents need the same type of care? Out of interest I'm finding some of the comments on here very different to lots I've read on other threads, where posters are advised to draw absolutely firm lines in the sand about the care they can or cannot contribute, and being cruel if necessary to walk away and let SS deal with the situation so that they don't end up being over-burdened. I really don't feel we're doing that - we're definitely trying to increase the support we can provide - but I'm not prepared to give up my career to do so.

I understand what you mean about my concern being more about FIL and I think that's a totally fair criticism. I think because he seems so vulnerable, and because MIL can seem very harsh with him, and because he's the one with the 'condition', I think our focus has tended to be on what's right for him rather than her. I genuinely realise now that we need to change this perspective.

MIL might seem harsh on him because she is completely burned out or not coping.

You say you could but you're just not going to. So MIL just has to?

Keep in mind that caregiver burnout is a real thing and MIL could end up in the position where she really just can't and collapses under the strain of it all. Then you will have to.

I understand it's hard. We're at the aging parent stage of life and I will have to make hard decision in the future with parents who don't live nearby. I'm already caring for a special needs 'child' full time (with only shreds of any kind of career left myself) so won't be able to do much.

The thing is, if you want certain things for FIL, you either need to facilitate it yourself or accept that he can't have them.

This raises an interesting question about spousal support compared with child support. Do I expect a spouse to generally take a more leading role in providing care (or arranging care) than other family members, assuming they're physically/mentally able? Yes, if I'm honest, I guess I do. If DH were (for example) diagnosed with a chronic or terminal illness, I would expect to be the person to fundamentally take responsibility for his care. Yes, I would hope that other family members would help and support - but I wouldn't expect his parents or his siblings-in-law or our children (assuming a few years older and adult) to move in or to fundamentally sacrifice their lives in order to provide care. I would expect to either change my own life in order to care for him, or to arrange for professional care if I couldn't.

I honestly do recognise that MIL is burning out and needs help. As I've said, I hoped that might be possible with a combination of family support and lots of bought-in care to allow her 'freedom' from FIL to live her own life and ease the tensions between them, while also allowing him to live at home for longer, but I'm now realising that that might not be enough, and that it's for her not us to decide whether this is workable. But no, I don't see it as my role to give up my own career and family life to provide the kind of care we're talking about. Help, support, respite - yes. But full time care for months at a time - no.

I understand where you're coming from and I also believe that spouses are the first line of duty when it comes to providing care. I'd certainly want to do that. I've come to realise, over the years, that with dementia it might be unrealistic to think that I can provide that care, depending on the symptoms and progression. At that stage I won't have got any younger myself either. I think your MIL needs some urgent relief, soon.

OP you asked what we'd do in this situation

looking at this "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."

I think the respite is the best idea. Give him time to get used to it, then extend the stay, then suggest it be made permanent.

your MIL isn't just in a position where she can't cope, she's in a position where her life is being spoiled. His condition won't get better. I don't see why you think he'd deteriorate, he may well flourish with a team around to care. Can they afford a nice place with activities etc?

I realise he has capacity but in that case he can be told the truth, which is that his wife can't look after him.

buying in more care is probably a sticking plaster, also, where does she go? If she's around when the carers are ariund, he'll look to her by default.

I agree re spouses but there are limits. Age is presumably a factor too.

Have I missed how old they are?

If you expect your MIL to be taking the lead on this, why are you even questioning her? She wants your FIL to go into a home but you feel it's too soon. You can't have it both ways. Ether you're involved or it's entirely her decision.

Realistically, however much involvement you think you should have, if you're not able to spend any time over and above the occasional weekend with them, it's really her call.

Perhaps you could have FIL live with you? With all the care you plan to put in place in his and MIL's home?

If it's enough care to take the load from MIL's shoulders then it's also enough for you, right?

Perhaps just for a few weeks to give her a break?

But no, I don't see it as my role to give up my own career and family life to provide the kind of care we're talking about. Help, support, respite - yes. But full time care for months at a time - no

But you do see it as your MiL's role, despite her being a great deal older and facing the grieving process of caring for a stranger 24*7

You think she is unsuited because she is an "active" person - honestly have you even met any carers? You seem to have very stereotyped views on caring for the elderly, caring for dementia and the kind of people who do this work and residential care homes. That may be part of your problem.

You say you expect her to take the lead on organising his care, but when she does its the wrong kind of decision making and you don't like it (and seem to be assuming she needs no care herself in this).

She is telling you what she needs, listen to it or have FiL to live with you with the package of care you consider should be enough to support MiL - if she should be able to manage with a few hours of extra carers then so should you. If you can't, then why on earth would you expect an aging woman to cope alone?

I understand why my initial post was unreasonable and I've changed my position - that's why you post on MN, surely, so that you can listen to other points of view and realise when you're wrong? 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 now accept, from what you've all said, that the strain on MIL is probably even greater than we realise, and that if we're not prepared to have FIL live here, then the kind of care we think/hope might work is irrelevant - it's what MIL thinks/needs that matters. And also that the right care home might be a more positive step than we'd feared, for which I'm very grateful.

I genuinely think it would be hard to have him at ours long term, for them as well as us. We're at home very little - both work full time, leaving the house early and getting back around 6pm, sometimes with work in the evenings, and kids have various activities, so life is fairly on with meals here and lifts there - it's not a settled routine. Neither of us has a job where we can regularly WFH. The only option would be to get full time care, and although we have a spare room where FIL could sleep, we don't have an additional room for a carer. We live rurally, where it wouldn't be safe or possible for FIL to get anywhere except by car (currently he can walk to the shops, GP, cafe, library, community centre etc). He would be moving away from an area he knows well, and where he knows neighbours, friends, community groups he's still involved in, to a place he has absolutely no connections. And he would see much less of MIL (who he's devoted to) than if he were living either at his current home with carers or in a care home near to their home.

NB they're both mid 70s.

And yes, it's quite possible that my views of caring are stereotyped, but I still think it's probably true that some people find it easier than others. People are different, so why wouldn't that be true? Tbh 'active' was possibly a slight euphemism, as I'm really trying to avoid sounding like I'm being negative about MIL, who I'm extremely fond of. I'm trying to find a nice way of saying impatient, which is how she describes herself - she's always very brisk and on the go, in a good way, and she hates it when things aren't done quickly and efficiently. I think she gets incredibly frustrated with FIL because he's now very slow and needs a lot of time and sometimes guidance to do things. He's very keen to still do things for himself (eg help out in the house by laying the table or making a cup of tea etc), as I think he feels that's really important to his sense of self worth, and he can still do those things, but he needs much longer to do them, and MIL finds that very frustrating and ends up snapping at him or not letting him do things for himself. So yes, I do think her personality makes her find it particularly hard to be a carer, but I'm not saying that's her fault or that it's changeable, I'm just trying to acknowledge that that's the situation.

We spent a week with them recently, and observed that what keeps him content is being left to gently potter about at his own speed. But of course he needs someone to be there to enable him to do that (which we were able to do for that week but can't permanently), and what this thread's helping me to realise is that that person probably can't be MIL any more, even with carer support.

I suspect if you say to your MIL that you agree with her that it might be time to start looking into a suitable care home and start exploring options, it would make a huge difference to her mental well being. She must be feeling pretty desperate

Agree, and we have now already done so.

I've been following your thread with interest @callmybluff as I feel we might be in a similar situation in a few months and I was surprised when I read the ages. I assumed - like my DPs - that the ILs were in their 80s.

I can feel even more for MIL now, in her 70s she probably assumed they had a few more years of reasonable health before the inevitable decline. Now she is grieving the loss of her DH as was, and the worry about the right thing to do for him and for her.

I'm glad you're investigating respite care now, it seems like the sensible option.I'm sure I read here that with old age and certainty dementia, sometimes there is no good option, only the least bad one and unfortunately that seems to be the case here.

I'm glad to hear that. Happy new year.

I hope you find a solution that reduces the worry and makes everyone a bit happier