DF now refusing discharge from hospice and wants to stay!

[Totallybannanas]

He has been there for 2 weeks now and they have managed to stabilise his symptoms so the plan was to discharge him to a nursing home. Long story short there was a mix up with the funding, and I've been struggling to find ones with nursing care and with a bed. I think the more expensive ones have been declined and the others have filled already the bed due to funding mix up. Anyway they have offered another home which wasn't the best, cramped and smelt of wee. Dad doesn't want to go there but we have no alternative and he doesn't want to go home. I do not want to be his carer again ☺️ I know what he is thinking and he is hoping to stay as long as he can and is now wishing himself to die. The nurses keep pestering me about nursing homes and about me finding somewhere, but I already feel I've wasted time looking. Obviously I didn't realise there was a restricted budget and you can't top up anymore, so any home we get isn't going to be great. I also don't want to make that decision. He has capacity and I don't have POA so surely he has to decide or they have to just move him. I just totally tired and bogged down with it all.

He needs to be discharged with a care package at home by the sounds of it, with carers coming in several times a day. My parents never got a hospice bed but the outreach service helped them get the right care in place and us to cut through the red tape. The palliative care my mum had at home was fantastic.

For my peace of mind I'd rather he went into a home so I carry on with my life with some normality. Il

It’s usually a nursing home (with a trained nurse on duty) that is more expensive.
Might add that people often refer to ‘nursing’ homes, when they actually mean ordinary ‘residential’ homes, which do often cater for dementia - my FiL was in one such for a few years.

OP, I know it’s very hard, but you’ll have to be very firm with both him and the hospice - and anyone else concerned - that you absolutely cannot have him back at your own home any more.

I think you need to tell the nursing home to contact SS and that you cannot be involved in his decisions and care anymore.

@GETTINGLIKEMYMOTHERDMs care home was £5,500 a month. They probably had no state paid for residents. If people ran out of money they would negotiate. Nursing homes will be more but most care homes are capable at end of life - DM got cancer and stayed. Dementia care is another matter and around here they cost more than most other residential homes. As do the few nursing homes. The residential homes won’t take in new people who are obviously very ill.

@Totallybannanas Old folk won’t do what you think they will do! Or be rational!

Living at home with 15 minutes care 4 times a day is what your SS people will want. It’s the cheapest solution. You will have to speak to the council and get a list of their approved homes. If they will pay, take a home. It’s the only way you can live again!

I’m still amazed a hospice took him in with no social worker involvement. You need to get one. What did they think was going to happen? Where did the hospice think he would go? It’s very odd to have no joined up thinking.

Like many others, you learn the hard way that end of life is a slog and no one really wants to help because they are bean counters. Is it reasonable that you help him to make decisions. Age Concern or Age uk might help too.

It should never be a problem for anybody, but it really is for so many. Social care is very high on the priority list of which shit party gets my next vote.

@abracadabra1980 Who is going to pay is the big issue. Here the council tax payer. It’s a huge commitment. We need an insurance policy but most won’t went to pay and prefer holidays and cars! The non working won’t want to pay for anything so we just lump it on the shrinking number who do work. Everyone has to save into an old age pot for care home costs.

Well they’re focusing on a nursing home so it doesn’t sound like they think home with a package of care is viable.

Tbh I would try to let it happen. This is so draining for you. You can’t control where there is space. Even if the home isn’t brilliant, there will at least be staff there and food provided and the basics. I hope you can reduce the frequency of your visits tbh you sound exhausted.

No you can't make him go.

you said he doesn't want to go home. Is that because he wasn't getting enough support at home? How about home with paid carers? Better option than a sub standard care home?

what was your relationship with him like prior to him needing care?

In this case I believe that OP’s father is in receipt of Continuing Care funding as he is coming to the end of his life.

Yes he has CHC. I wasn't overly close to my dad, but I've gone sick to care for him but he has been an absolute nightmare and continues to be. He is just waiting to die, and he isn't there yet. However, he seems to think he is. He doesn't want to go home, even with carers. When I had a morning carer in all he got them to do was his bed. I was the one running around ragged. When he got taken into the hospice he wasn't well, so they managed his symptoms with the aim of discharging him to a home. This was the plan. He agreed, but now he has stabilised he doesn't want to go into a home either. He wants to stay. The hospice are pestering me to find one and I have genuinely looked. Anything decent is full or won't take him as they are dementia specialist. So I am completely stuck. Even if I found somewhere I don't know if he will now go. He things he is going to die next week, he has been saying that the last 2 months. My patience has run dry.

I think if I were you this is the moment to be strategically unwell. Stop visiting. Let the hospice know that you’re having a minor procedure (unspecified) and once you are discharged in a day or two, although you are having to work from home and therefore are not free to make calls, you can’t drive or lift anything for two weeks so won’t be visiting.

The hospice will have people who don’t have family running about all the time. They’ll cope, if they want the bed that much.

There should be a Brokerage team at CHC who can contact you with vacancies which fall within their funding limits. Have you spoken to them? If the Hospice are pushing you, suggest they contact the Brokerage team and when you are told of suitable vacancies, you will look.

Ok, I will look into it. I just don't want the response anymore. I've just gone back to work and I'm enjoying my life again. Dad has made it alot harder for himself and me in the process!

I get that, I would suggest then that you tell the Hospice to liaise directly with your Dad and Brokerage. Explain you have burn out.

@Totallybannanas let social worker sort it out and you step right back. just say you are taking no part in his care so they will have to do it!!

Is it definitely a hospice, op?
It would be extremely usual to be admitted to a hospice and then recover enough to be discharged home within two weeks??
They provide end of life care.

@KilkennyCats our local hospice offers symptom management admissions as well as end of life (ie last days of life) care. Not unusual for patients to have to leave once stable. It is a charitably funded and therefore they can decide their admission and discharge criteria. It’s free to the patient but so much effort goes into fundraising for people who really need the expertise of the palliative Drs to manage symptoms. Worst case scenario of a stable patient is that they would be sent back to hospital pending a suitable Nursing Home place.

Oh, I see.
Thanks @PandyMoanyMum

@KilkennyCats The hospices here are not that generous! There’s a huge shortage of spaces and it’s difficult to get a place. This one seems to be used instead of hospital which also doesn’t happen here. Hospital brokerage contract sorts out care home and I said that to op yesterday. This placement seems to have bypassed SS and hospital so no one is sorting it out. The Hospice must know there’s no home places for state funded people so what did they expect to happen? It’s the dreaded “bed blocking” of course and they will expect op to look after him. That’s the default now. That’s why we have millions not working. People don’t think about what they need to do in old age and then don’t like what the options are. A home further away or home care team.

@KilkennyCats hospices and palliative care have been banging on about not just doing end of life for decades!

A short admission for symptom control is a very normal hospice admission before going home/to a nursing home.

@tarheelbabyAlmost any house can be adapted to accommodate a person who is going home to die. All you need is to make space for a hospital bed. Hospices are not part of the state or NHS. Communities fundraise to keep them going. If they say someone doesn’t need their service, your selfish response is “ignore this, stay put, they can’t make you leave”. I bet you’re one of life’s takers.

This is her Dad not her. She is not responsible
for a grown adult who refuses to go home.

As much as I would like him to stay there, I realise he is blocking a bed. The only thing that makes me feel less guilty is knowing that there are two empty beds already there and they have been all week. I wish he could have managed at home, but he's been waiting to die since day 1 and is feeling sorry for himself. He's not easy to care for, and now I've stepped back I've realised that and how much nicer it is just visiting, although even that becomes a chore at times as he expects it everyday. It took me a long time to emotionally detach myself and realise this and actually go back to work and have a little bit of my life back.