to make it plain to df that if chooses to go back to his house we can help but can't run round after him constantly

[ohreallyIsee]

Had a shit month, my stepmum died just before xmas(had been in home with severe dementia for about 4 years), her funeral is this week. Df has endstage cardiac failure(surprised he's still with us) and has gone downhill a lot over last few months. He's still at home but myself and my stepbrother+sister have serious concerns about state of house and his ability to look after himself but he has been refusing all help(won't consider having carers or even a cleaner, no keys are or alert system). This week had to call an ambulance and he went into hospital, they wanted to discharge him yesterday but we've managed to persuade them to keep him til Monday.
We all think it's time for a home but we know he won't agree to that. House needs work before we're happy for him to go back(dangerous stairs, toilet not working properly, house filthy), so are we being unreasonable to say that if he insists on going back to the house we can help out but can't run round after him constantly, I work nearly full time in a stressfuljob, my stepsister has her own health problems and my stepbrother lives at the other end of the country. We're trying to get social involved but don't know if he'll co-operate

Of course they will expect family to provide any care they can, why wouldn't they. If family can't no one can force them just like they can't force anyone with capacity to accept help.
Hospitals are full of patients medically fit because family decide on day of discharge that it will be unsafe for them to go home, or they are going on holiday so nobody at home to provide care, or some other excuse that they must have known about for the weeks their relative has been in hospital.
People play the system all the time.

This is a safe guarding issue and you are quite within your rights to get social services involved.. Is their power of attorney in place ?

Been to see him tonight and he seemed to be listening to what I was saying rather than shutting me down. We're going to try to get him into respite care asap so that he's not bed blocking while we try to get the house sorted, main things getting to toilets sorted, house clean and the stairs made safe by the addition of a bannister on the outside (otherwise big drop off stairs to floor). We also want a key safe and medicalert set up. We're also hoping to get him to accept a cleaner/carers.
He seems amenable at the moment but we'll have to wait and see as he does have capacity so ultimately it's up to him.

I think he's realising that we've reached a crunch point and things have to change.

Hopefully you can get an occupational therapist round to the house as part of the discharge process. They're the experts in knowing what's needed - handrails, toilet risers, shower seats, grabbers - things you wouldn't know about or think of yourself.

I suspect, OP, that he will be changeable about what he is willing to accept.

To the PP who says that families should have 'the conversation' with their elderly relatives, let me say that I have had MANY conversations with my DM and while she has been somewhat agreeable to accessing various types of help when she is in an occasional crisis, she usually backs out or denies that she ever agreed to anything. She will say things like "yes, one day I will need more help but I'm not there yet" which means that she gets herself into another crisis situation that could have been avoided. I don't think that my mother is unusual, it think there are a LOT of serious conversations being had by the children of parents who simply will not give it consideration.

Trouble is, a lot of us HAVE had the conversation, multiple times, and the elderly parent ignores it, or agrees at the time and then refuses to do anything different.

I had it again over Christmas. Reminded “D”M that if she had a fall/stroke/crisis I can’t just drop everything and come
and deal with it. Because of my dc, and job (FT, demanding, involves travel and overnights). Her response: well work will have to sort themselves out, you’ll be needed so you can’t be at work.

When the next crisis happens, she’ll be yet another one stuck in hospital whilst SS try to get hold of me.

Indeed. It's nigh on impossible to have any sort of difficult conversation with my DM, always has been.
If changing the subject was an Olympic sport...

Her response: well work will have to sort themselves out, you’ll be needed so you can’t be at work.

Wow, that's a pretty selfish response. I would go down the 'I need my job and can't afford to lose it as we will lose our home' line.

I have found that even perfectly reasonable people like my DM can be nigh on impossible to have a constructive conversation with after a certain age. When she was my age she was looking after her demanding elderly mother who refused to have 'strangers' in her house to care for her. And so Mum had thoughts about her own old age with quite rational options about how she could live with loss of independence. None of this thinking has made it into her actual old age which is filled with denial, grumpiness and being demanding towards her DC. Although she does have people (not 'carers') who come in, keep her company and drive her around since her eyesight got too bad to drive herself.

I'm not really sure how to approach things for myself tbh. I don't think I will turn into my DM, but then I didn't think that she would turn into her DM. My DD lives abroad and my DS has multiple issues and needs support in adulting so isn't likely to be able to anticipate my needs when I can't be independent.

Yes, going through exactly this now with MIL.

Very reasonable but you do have to realise that your dad is a grown man who is within his rights to stay in his own home, difficult though that may be for everyone else. There will come a time when we are all in your dad’s position and may also not want to leave our home and memories, despite currently believing we’d be ok with it.

All in all it’s very sad.
Nobody wants to be in this position, whether the elderly person or the family.

Another one who has looked after elderly dad and then elderly mum who both had this approach to ageing. Dad was dementia, eventually sectioned, mum was stroke. I’ve also been bedbound myself and remain disabled. We were all self funders.

I’ll be frank, once you’ve been in the position of needing carers or a care home, you quickly realise how unrealistic and selfish parents can be. It’s rarely health issues that can’t be overcome, it’s attitude and the belief adult children should do it all. Even parents who say when younger they will do xyz suddenly find themselves acting like this when the time comes. Yes they can absolutely decide to stay in their own home, the majority of us will want to and it’s possible. Equally you can decided to do none or minimal care as the relative. Both these things can happen just fine. It’s often not the best solution for family to be relied on for home care because they have jobs, their own kids, live far away etc. OP is right to be concerned, family care no matter how well meaning is often unreliable or not enough in the long term and results in another hospital stay sooner than anyone wants. You need a proper safety net able toadapt as things change.

Absolutely the hospital is responsible for sorting out a discharge is safe, equally the council is responsible for carers and social care. If they are self funding, the parent can and should pay for carers. Be clear on who is responsible for what. It might vary a bit on the situation but honestly most of the time it’s just the hospital and council trying to wiggle out of it till they absolutely have to. Obviously if parents is responsible for paying they can’t be forced and can give another layer of difficulty in accepting how things are.

I don’t think the OP is asking for more than what would be considered at discharge for someone of any age. The hospital shouldn’t need to be reminded that prior to discharge they need to arrange what needs to be to make home a safe place but it sounds like they do.

I know he has very right to choose to go back to his own house but he also needs to accept that he is now in eighties and poor health
He really needs help to stay at home and me and my stepsister are limited in time and ability in what we can provide.
If he is prepared to accept help he will be able to stay at home safely, otherwise I can see we will be in crisis mode again or worse shortly

Most people in reality end up having to introduce carers as “friends” or “someone to give you a hand”. Whatever the reason they will accept, my parents were used to and quite liked people in the house to chat to, so we called them the cleaner which was a role they were used to. Once in, they would then help way beyond cleaning.

You can also try the move direct approach of literally saying what you have here - dad, we love you, and the choice is yours - accept the help available (paid carers, the council) or go into a nursing home. Which would YOU prefer? Point out that if he delays hints then it will almost certainly result in a nursing home simple because it’ll all be an emergency. If it is very important to him to stay in his own home he should accept this. But, sometimes not. Sometimes people sadly do need a couple of admissions before they come to terms with reality but they usually do over time. It can also help when it’s coming from a professional like nurse or social worker- you can find the reaction is quite different.

I can’t walk past this post without asking all those with elderly parents not to leave it to social services or the hospital ward team to have the conversation

As others have said I think this is naive about what actually happens. I would bet the mortgage that every family has had those conversations. Elderly people just don't want to hear it and are in denial. And quite frankly if they just refuse to engage, fairly often the family does step in to help, so it's a game of chicken that the recalcitrant old'un often wins.

We currently have the same issue with my dad. He shouldn't be living alone, but refuses a live in carer or going into a home.
He has carers in 3 times a day, a cleaner and meals on wheels, but he only (finally) accepted the carers (after physically removing one carers from his house), after we told him it was carers or a nursing home. However, it still means an awful lot of running around for us (he is currently in A&e), and we are physically and mentally exhausted by it.

I sympathise My SIL rented rooms in a large house, where the elderly owner also lived. When the old lady started having falls, my SIL was roped in to take her to A&E. When the hospital asked who would take care of her , and the lady answered "SIL". was when my SIL started looking for a new home! No relative, everyone just assumed that because she was living in the house she would take on the responsibility.

She thinks paid compassionate leave should cover potentially weeks of running around after her on repeat.

I’ve pointed out that there is emergency unpaid leave which is a day to deal with an initial crisis, but after that I’d be expected back at work and someone else dealing with the care. And that compassionate leave is two days paid leave when she dies! She’s also expected me to use compassionate leave to take her to the funeral of someone I don’t even know.

The fact we will all be old one day is irrelevant. It’s not a given to become stubborn and unrealistic. My own GP planned well. There comes a point when needs outweigh wants and as individuals we have a responsibility to get our heads round that at a much earlier age if we all want modern medicine to continue to extend our lives past their natural end. As a nurse of many years in both primary and secondary care I see the ramifications of failure to do so every day. Look at the profile of the majority of those filling medical beds, A&E units, the ambulances queued outside hospitals. Many hundreds of thousands on a revolving door of re- admissions and unsafe discharges up and down the country.
Anyone is allowed to make unwise choices as long as they don’t impact negatively on others, particularly our nearest and dearest. To make them knowing that they will is the height of selfishness. PIL, dementia free, had a similar ‘cross that bridge’ mentality but were straight on the phone to us the minute things predictably fell apart. Dreadful parenting. It damaged the last several months of their children’s relationship and left a very poor legacy.

I said she was being very reasonable to say they can only help out occasionally. Ultimately, it is still, and should be, his choice. He accepts the risks etc of living alone.

Except those choices are usually made at someone else’s expense. He has the right, that doesn’t make it right. I hope I don’t do this to my children.

Well he's being discharged today, is refusing any help or care package. He apparently is going to let someone look at the stairs but we will see what happens.
I am happy to call him every day to check on him and go shopping for him a couple of times a week and have him up for meal once a week but I can not be at his beck and call nor can my stepsister due to our own lives.

Almost inevitable that he would of course insist on going home. I think the modern “discharge to assess” approach can very occasionally work well if the team is able to do home visits promptly and get equipment in very promptly. More often it is a way of getting a patient out and leaving them to struggle on.

Please do try and stay to your boundaries. Does he wear a falls alarm at least - who is on the contact list for that if he does? Hopefully the stairs will not be his undoing.