How do you tell them they aren’t coming home?

[bridgetreilly]

My dad has been in hospital for over a week following a heart attack. He is now medically fit for discharge but needs assessment by the physio and occupational therapists. His mobility is extremely limited, his memory is very poor, and he has numerous minor needs. My elderly mother and I have reached the difficult decision that it is no longer safe for him or her to have him cared for at home. We have been to look at a care home and the plan is that he will be discharged from hospital directly into the home, probably next week.

He will hate the idea. He doesn’t see why he isn’t at home now. Partly that’s because he doesn’t remember the heart attack, and partly because while he is in hospital with people to help him with everything, he feels quite well. He has no idea how hard life has been for Mum over the last year. They have had carers coming in, but she has also done a lot and she is exhausted. We’ve discussed 24/7 care at home but there are a lot of reasons why this won’t work.

I actually think he will settle quite quickly and contentedly into life at the home, but the prospect of telling him - and it will have to be done repeatedly because of his memory problems - is daunting.

Does anyone have experience of this and suggestions of what to say/not say?

It’s incredibly difficult to manage but the law is the law. I’m not even suggesting OP idea is wrong, simply that it won’t be an option if her DF doesn’t accept it. It’s very hard for all involved, I’m not trying to minimise that. The best place may well be a care home, but realistically if he refuses with capacity he isn’t going to be going to one.

I found this so difficult with my mum, but having spent seven weeks in hospital during the latter part of the pandemic, her dementia had got worse and she had got quite institutionalised. I wasn’t allowed in to see her for a couple of weeks before she was discharged because she had tested positive for covid and they kept her on a separate covid ward until
she could be discharged. I had very little say in which care home she went to, despite having POA, but fortunately the home turned out to be wonderful. Every time I saw her she asked when she was going home and I explained thst she was in a convalescent home and she had been very ill, and needed looking after to recover. In her case, the home also offered convalescent care so it wasn’t a complete lie. She used to get very worried about her house but was reassured when I told her that I’d been round, watered her plants, and tidied the garden. It was so so difficult and I feel for you OP.

My mum had dementia and it was a worry as it was more and more problematic for her to live alone. But then she had a stroke. It didn’t make her dementia worse but she became doubly incontinent and non weight bearing. I told her she was going into the home until she was able to look after herself. Take herself to the toilet, make a cuppa etc. I knew she was never going home again but she didn’t. A few times she asked about going home and I repeated the “ when you can make a cuppa etc” she accepted this and stopped asking after a month or so

The person needing care wont be managing it. The Mum wont organise. It will be a daughter, hour after hour, day after day. They wont go on holiday. They wouldnt dare. Issues will come up which THEY will need to resolve.

No, it will be Mum. And she will literally kill herself doing it if that’s what it takes. But it still won’t be the best or safest thing for Dad.

Sure, but it doesn't sound like anyone is forcing here. Save your comments for a debate on the merits of care homes, not for someone who needs support.

Sorry, I wasn’t trying to be rude (unlike you, clearly) I was just, as others have, mentioning the facts. I apologise if this had upset OP.

Why not ask him to agree to just try it for a bit while he recovers?

That's not lying. It's a reversible decision.

My parents both have a weak spot of each other.
So if I say to Mum 'this isn't fair on Dad' she'll give in and vice versa.
Failing that we use 'this isn't fair on us (myself and brother)'.
This has facilitated getting in cleaners and a carer visit, and stopping DF trying to cut down a tree (aged 95).

So I would say to the OP's DF that her DM can't cope, it isn't fair to put that load on her.

Not rude, just disagreeing with the way you approached the thread. If you think I'm rude FGS don't try AIBU.

Under the under Mental Capacity act everyone is deemed to have capacity until proven otherwise. And an "unwise" decision doesn't mean they lack capacity.

Capacity is decision specific and if the person must be able to retain and weigh up information to make a decision.

The impact of a decision on others is very relevant to their capacity. They may say they want to go home but if that is not safe for them, nor for those they live with, then if they cannot weigh that up, they cannot just override everyone in the name of ‘capacity’ when they clearly have no insight into their needs and the impact on others.

If you read the op then very clearly there have been lots of things tried already at home which are no longer sustainable.

Excellent posts from @sashh and @asknotwhat on the realities of lived experiences.

Disagreeing with me is fine. Telling me to ‘save it’ is rude. Also, AUBU being worse doesn’t make your post ok. There absolutely is a question of capacity and I’m not the only person to mention it so not sure what your issue is with me specifically. Anyway, like i said, apologies to OP if any offence or upset was caused.

The op started the thread for support with a very difficult conversation that needs to be had.

A number of posters have jumped straight in with capacity points suggesting it is not a decision in the family group’s best interests but all about the ill person’s wishes and those wishes determine the outcome overriding everyone else.

If you have been in the trenches of caring you immediately recognise from the op that she and her mother have already had a difficult year (probably longer), with visiting care already coming in. The situation has now got even harder with a further deterioration in her father’s health.

Op and her mother obviously both care deeply for her father’s well being to the extent her mother would run herself into the ground for her father and op wants to prevent that.

White lies and a nursing home move have, in my experience, saved the physical and mental health of the many (immediate family members, their partners and their children). Despite being at a surface level against the wishes of the one.

Because living at home ‘independently’ was actually living very dependently, imposing great daily demand on others and extensive use of public services for preventable emergencies.

The cost of a nursing home is also on a par with 24/7 live in care, which needs more facilitation as pps have observed. A good nursing home provides care on hand 24 hours a day and usually a visiting GP and other services. Allowing family to be husbands, wives, sons, daughters and grandchildren again.

Actually in my opinion it's not all about the patient. It's also about whoever lives with or supports them. They have just as much right to live as they choose as does the patient.

I agree. If, for example, my mother decided she could no longer live at home with my father on whatever care package was agreed, she could move into a home. And then his situation would be entirely different. We aren’t trying to steamroller someone against their will so that the rest of us can have an easy life. We’re trying to balance two people’s ongoing needs in a way that gives them both the best possible outcomes.

I think that asking him if he’s willing to try it is a good idea, and we will certainly be talking about what is safe for both of them.

No one person's life can be prioritised, long term, to the detriment of others' lives and health imo, and I have been there and managed at great cost (not financial) to keep both parents at home. And I believe the vast majority of spouses and parents would not want their loved ones to be prioritising them to the extent that their own health would suffer.

I just want to make clear when I mentioned capacity it was in the ‘your idea might not be an option’ vein, I wasn’t trying to be mean and say OP was wrong or even that it would be better for her DF at home. I don’t think that at all and when I said it is about the patient I meant legally, not practically or emotionally and posted from my own perspective having been in a very similar situation and could not have the person placed in a home. Of course that’s the better option all round, but if an adult with capacity blocks a move there is very little that can be done.

No. You can’t. Unless they have had the appropriate MCA assessments and they individual if found to not have capacity.

Thanks @creekyjohn I appreciate that. I think as we were the relatives sacrificing our own lives (and neglecting our partners, children, and livelihoods) I am very triggered to these stories and posters jumping in when the op was clear that things had been deteriorating to an unsustainable level over time.

We found there is a great reluctance to label anyone as not having capacity despite it being clear as day to the family how desperate things are - and capacity may still be there for other decisions, I do get that. This reluctance forces families to ‘put them in a home’ and deal with the fallout.

I also remember the massive learning curve we had and how helpful MN was. I try to pay that forward when I see others ask for advice or experience.

No one wants the patient to lose hope, least of all family. But if they do have capacity, the real question is: now FiniteSagacity has had a nervous breakdown, how quickly will you die because you haven’t had your medication/are dehydrated/haven’t eaten/have an infection/are injured after another fall?

These risks were all real despite 2 carers 4 times a day, nurses daily, sheltered accommodation, a falls alarm.

Even though it may be in everyone else’s best interest. If the person has capacity they can make that decision- however unwise and detrimental to others. Whether his wife chooses to stay living there/ caring for him is a horrible choice she’d have to make.

I imagine everyone posting on this thread has capacity to make the decision where they live. Imagine if a family member tells you tomorrow that you can’t live in your own house because they’ve discussed with the wider family and they’ve decided what’s best for you. Sounds unbelievable doesn’t it? That’s what many people do to people just because they’re old (and even if people lack capacity they should still be involved in decision making as best they can and be fully informed, not just after the fact).

If he puts his foot down you move your mum out (or threaten to). Well done, you’re thinking long term and for the greatest benefit to the most people.
The wants of one person towards the end of life don’t trump those of others, particularly those in the prime of life. A decent spouse wouldn’t want that life for their partner.
Sometimes, sadly if we all now want to live to 110 often in very poor health, good enough has to do.

@NerrSnerr not unbelievable I have had to tell my teenage children to please put me in a home and not sacrifice themselves - and I’ll be putting that in writing decades before most people do because you don’t know when you might have a health event.

I am aware of why the law and deprivation of liberty safeguards are there. I am also aware of the rose-tinted perception (or lucky experience) people have of visiting care / live in care. ‘Just get carers in 4 times a day’ requires a huge amount of facilitation and other ongoing support.

It is tone deaf to say a wife / husband must let them stay at home - and if necessary move out of their own home to facilitate that. What if money or the partner’s own health don’t allow for that?!

The reality, obvious on the elderly parents board is that free choice in the name of capacity is forcing many families to watch one parent crumble for the sake of another - or an excruciating slow car crash of a million ‘unwise’ decisions which all point to actually not having the capacity for the big decision to move into 24 hour care.

I will do the same, having been the at-home carer X2 and with no resentment for having done it. I don't want that for my children.