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.

Hospices give very good care and often people don't want to leave. But there has to to be space for other folk in need of hospice care. It's difficult but an alternative needs to be found for the present. Maybe he can be admitted again if he needs to be.

I totally get that. Luckily at the moment the ward is quit and there are empty beds. But I've struggled to find any nursing care, either there are no beds, not enough funding or they only take dementia patients. I just don't know what the solution is. Then hospital are asking me to sort it but I can't make him go! Equally if eh decides to come home I don't want to be his carer. I've done that for 2 mths and I want my life back.

If he has capacity you can’t admit your DF into a care home against his will. Make that clear to the hospice and say you are doing your best to encourage but that’s all you can do. Point blank refuse to have him back to your home or you will become default carer… could he go to his own home with carers?

I can't say I blame him, who wants to go into a cramped home that smells of wee.

He doesn't want to go home either as doesn't think he will cope. Plus he would want me to do all his shopping, cleaning and cooking and I can't do this long term. He is isn't the easiest person to look after and I'm trying to go back to work. He would probably like me to quit my job and become his carer. And yes, I don't blame him but I don't think he will be happy anywhere.

Maybe there are different kinds of hospice and different reasons for going into hospice, but when my DH was tranferred there (referred by hospital and supported by GP), no one was really planning for him to live anywhere else and he only lasted about 2 weeks. Even so, there was a moment about 9 days in where staff commented that he could possibly 'go home'. We were horrified. Our house is totally not suited to a semi-bedbound patient.
So don't move your DF - I don't think they can make you

Really sorry you are this predicament OP. It's horrible in so many ways. To be honest as your dad sounds like he is of sound mind, I think the hospice need to be talking to him about this. Ultimately, they are the ones that need to be discharging him to somewhere that will meet his needs. Is there a day unit he could link into? I was a hospice volunteer 20 years ago and we had a thriving day unit where people would come and do activities from their nursing homes or houses to give them a change of scenery and carers a break.

The hospices I know are end of life care. This sounds like respite care. Do you have a local hospital and has he been in hospital? They have companies who help with home placements. Or he goes home with a care package. I’m surprised there’s no social services involvement. Or services signposted by the GP. Have you contacted any of these people?

Also what money does he have? Does he have savings? Or a house to sell? You need to plan his care and I know how hard that is.Also Age uk might be able to advise.

Could he go home with a care package? He has capacity so you can’t make him do anything and a not very nice care home is not very appealing.

Has your dad visited this home that smells of wee? You don’t seem to be getting much help with discharging him. Is Adult Care / Social Services available to you to discuss / assist with sourcing somewhere?

As I understand it, you don’t need to have a resident Nurse to have Nursing care for end of life. Residential homes look after their residents well on this way, and the Community Nurses attend to administer sub cutaneous drugs when it gets to that stage.

CHS Heakthcare Home Selection helped me. They had a contract with the hospital DM was being discharged from. Most patients don’t end up in a hospice with nowhere to go.

Does he actually need nursing care rather than residential care? You’ve said hospice & hospital but they are quite different. If you are struggling with the process then dad will need a social worker to help you. You can top up fees so that’s shouldn’t be an issue if you have the extra money.

@TizerorFizz in the UK hospices (apart from a very small number of nurse-led hospices) are funded to provide specialist palliative care for a typical admission of 2 weeks. Some admissions will be longer, some shorter - the hospice I worked at for longest had an average length of stay of 8 days.

A very very few still do respite but in most localites this isn't funded as hospices are an expensive way of providing respite and demand for beds is too high.

They also aren't specifically end of life - although a lot of people do go for end of life care, lots also go for short stays when they are in crisis to stablise and move on either home or to a care home.

Social services are rarely involved in discharges from hospices as the vast majority of patients are eligible for Fast Track CHC funding.

OP's father sounds like a very typical symptom control admission right down to not wanting to leave.

Unfortunately hospices can evict people if they no longer need to have hospice care although I've never seen it happen, I have seen patients and families being told the process is being initiated and that has been enough for them to see the hospice is serious about it and move on.

Hospices aren't nursing homes and if everyone who wanted to stay longer did so, there would be no hospice beds at all very quickly.

How did he come to be in the hospice?
You absolutely need to take a huge step back and say you can do more. You do not have POA, you cannot find anywhere suitable. You will not look after him.
I assume he has no funds/ property?

@AnnaMagnani I know the one my fil went into was end of life. He wasn’t coming out for an extended period of care elsewhere. They are charities strapped for money. I’m just surprised it’s not a home first, hospice later. It would be here! I’m failing to understand how he got into one in the first place! It seems like care between hospital and home.

If he has capacity and you do not have POA this is not your problem.

step back. Visit a bit less.

is his home also your home?

No he lives in his ground floor flat which he rents. I have taken 3 mths to care for him as he has been poorly on and off, but I can't go back to that. I need to keep my life going.

No he doesn't. He has been given chc funding but I didn't realise there would still be restrictions which has limited our choice of homes further.

I don't want to choose the home or force the move. I asked him if he would go home with a care package and he said no, I asked about the home and he said wanted to stay in the hospice. He is hoping he will die before they discharge him, but I can't see that happening!

Hospices in the UK these days are specialist places to get symptoms under control and stable when they can’t be managed any more in the community. Discharge to a nursing home is reasonably usual if the person’s condition is stable. The person would still be known to the community palliative care team after discharge and readmission is also possible.

I think this is the social worker’s problem rather than yours per se. Is there an official or unofficial limit on the number of homes he is ‘allowed’ to turn down?

It honestly varies from hospice to hospice how firm they are on this.

The last one I worked at was very firm and after you turned a couple down it would be made clear that CHC was choosing the home and you were going.

Who draws the short straw of having the 'I appreciate you like it here but this is absolutely not an option' varies from hospice to hospice. A lot don't have funding for a social worker or discharge planning nurse. It's often the doctor, or doctor with someone else.

You don’t have poa. Just take a step back and don’t let anyone push you into making any decisions. It’s the social workers problem here.

@TotallybannanasSometimes state funded residents are subsidised by other full paying residents. Therefore homes put up fees for the majority because they will keep residents who run out of money but they won’t take many non self funding people from day 1, if any. They want to stay in business. If you don’t have money, choice is very limited. I’d contact SS to help and get the Hospice to spell out their policy to him. It’s not great but usually a home catering for dementia costs more, so I would see if they can be avoided.

They haven't said anything regarding the home, he doesn't even have a social worker. It's the hospice that have taken him in and who have applied for the funding. I've looked at homes weeks ago and submitted the ones that I liked, obviously some of those are out of our budget but they didn't tell me that! At the moment the hospice has a few empty beds but obviously that won't stay like that. I have just had enough to be honest, I never thought it would go on this long. DF has not coped well with the diagnosis, he's feeling sorry for himself but he has had me running around after him left, right and centre. I still visit daily which is becoming a drag, especially after work and he isn't any closer to the end. He isn't making the most of the time he has left either. I have just had enough of the responsibility now.