DF now refusing discharge from hospice and wants to stay!

@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.

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.

@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.

@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.

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

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.

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.

@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.

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.

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.

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?

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?

@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.

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?

@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.

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.

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.

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.

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?

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.