To ask for help defying a dying parents apparent wishes about care…

The patient also thinks s/he has been having telephone conversations while in hospital with his/her other children and a dead son.

When no phone calls of any kind have been happening.

Still think s/ he has capacity?
surely there’s doubt?

Well of course it's possible that the parent has changed their mind about where they want to be.

Sadly, if it's not possible to be at home then it isn't!

How many homes can take a hospital bed plus whatever equipment is necessary?

I'm guessing that this is only a possibility because Op's other parent is still in the home?

Those saying that dying parents wishes override - what if there is no-one at home?

OP is it an option to say that the other parent is not living at the house? Could they come and live with you? I appreciate you are 2 hours away but this may mean they'll agree to hospice.

DF had been well looked after by local GP, DM and ( a bit) by me. His condition declined spectacularly one night, the next morning the GP came and arranged for him to go to the local cottage hospital straight away ( those were the days…).

As the ambulance crew were taking him out of the house, he held my hand and said he didn’t want to go; but I knew he had to, his situation could not be helped at home. The care he recieved in the hospital while his physical and mental state fell off a cliff was exemplary. We could visit without restriction, they kept in touch with me by phone during the three days it took him to die.

I still feel guilty that I had to deny his request, even though it was twenty years ago, but I made the right choice, for him and for my mother. Sometimes ‘guilt ‘ is just the price you pay for making the right decision in difficult circumstances.

Surely whether they go home or to a hospice does make a difference to the hospital, though?

if there are no places available at a hospice then the patient cannot be discharged and stays at the hospital (“bed-blocking” I think is the awful phrase)

It’s entirely possible that hospital staff have suggested this as a way of clearing the bed. That is a priority for them and that’s understandable. Home is an option and it’s easy for a patient to feel they need to agree especially if they are in pain and suffering from confusion.

If you are an only child with no other family and you have looked after your parents for ten years full time into their 90s with dementia and cancer and all the rest and you are burnt out and finished and both parents are difficult domineering people, definitely opt for a hospice if you can BECAUSE it is as much your right to be allowed to spend time with them and sit with them in their last days as their son or daughter rather than having to do all the personal caring duties with no sleep having health problems yourself. No one size fits all.

Oh the irony. You think you know best too.

We don't always get choice in life and that's for very good reasons. It's not just about convenience it's about safety, dignity and the mental health of the other parent.

It also sounds very much to me that the dying person doesn't have mental capacity if he thinks his dead son is still alive. My father died at home but complained on a daily basis that he hated it there and wanted to be in the Carribean. Should we have taken him there because it was his dying wish?

It is a very difficult situation; but hospitals can and do get it wrong.When my dying father was in hospital, my
mother got a call to say that they wanted to arrange for him to come home. She was beside herself; she is 84 and frail. She knew she wouldn’t be able to restrain him if for example he decided to go out for a walk- he was physically able but had a brain tumour so he wasn’t really at all compos mentis.

She knew she wouldn’t be able to cope; never mind the trauma; we had to really push back and refuse. As you can imagine this was a very difficult and guilt making situation. He died about 3 weeks later after a number of falls in hospital. Even where he was looked after 24 hours a day. I feel for you but just keep refusing. Like you say, your parent always wanted a hospice.

I’m involved in a similar situation right now, although it’s with my elderly neighbours not family, so I appreciate the emotional link is not the same.
They have no family at all so I’ve been quite involved at their request- practically and emotionally.
Husband diagnosed with cancer after unrelated emergency hospital admission. Rapidly deteriorated and terminal with no treatment- initial timescale of months / weeks. Very poorly whilst in hospital with 3 other serious infections.
Wife has gone from fiercely independent to an emotional shell of herself.
She was clear she could not manage if he came home- the emotional toll was too much.
He wanted to come home.
I sat in the discharge meeting. Palliative care nurses were compassionate and sensitive and ensured both parties were heard. There was no pressure.
He moved from hospital to a short term inpatient bed in a hospice (not within 10 days of death), to a nursing home on fast track CHC funding.
I took his wife to visit for the first time last night. She is full of guilt and now feels she’s made a mistake and now wants to explore whether he can come home instead with carers. He doesn’t know this yet.
It is such a difficult situation to observe and I’m removed from it as a non-relative. Both of my parents had significant health involvement prior to their deaths but this is my first time involved in selecting / considering care and I can see the impact and all the complex layers involved.

Or your own mental and physical breakdown which takes years to recover from.

good luck today. i think you do need to raise with the hospital the potential that you will need time to make arrangements for your other parent to move out of home, and see what kind of response you get to that.

like others, i really doubt their ability to put in true 24/7 care at home.

Or, him being at home utterly confused about everything.

PPs seem to be imagining this parent as someone with full mental and emotional capacity. If only things were that simple, of course it would be lovely to nurse him at home...

It’s an absolutely awful thing to say to someone struggling with whether or not their ill parent will get what they really want and whether or not their other parent can physically or mentally cope with caring for them. Who reads that someone is struggling like that and chooses to make that post? Others have made the point that you need to consider how you will feel afterward about the whole thing and what if this really is what your parent wants in a way that is compassionate and supportive. This comment was just nasty.

You are horrible and simple of thinking

What is awful is watching someone in so much pain, whilst you endlessly call the emergency line asking when someone can visit to alleviate the pain and no one coming.

Unfortunately, it's a different story if someone's mental capacity has declined.

I think you're right. Please don't be guilt-tripped into complying. Dying is not always as easy as it sounds, and being at home does not make it peaceful like in the movies.

Try contacting Adult Social Care and find out about respite care. Explain that your other parent is not fit to cope with having them at home. Would it also be fair to say that you can't guarantee your parent's safety at home (e.g. if they wander around in confusion and might fall)? If so, stress this.

I'm so sorry you're in this shit situation, well done for trying to protect the precious remaining quality of life of both parents.

Is this a possibility, OP?
I absolutely get the concerns you have regarding capacity but if querying that fails and the dying person comes home could the other person live elsewhere as a last ditch measure to take the pressure off him/ her?
Very sorry you are having ti cope with this situation. Best wishes

And leave the dying parent in hospital to die alone in unfamiliar surroundings? Because that's what will happen.

My DF passed a couple of years ago from terminal cancer, we always knew that he wanted to die at the hospice. When he was due to be discharged from hospital the hospice was full and there was no option but him to come home.

He had a hospital bed, carers came 3 times a day, plus district nurse and towards the end he was fitted with a driver for pain relief and we were able to arrange the occasional night support. My Mum was hesitant as she too wanted space, felt ‘unsafe’ having strangers in the house etc etc.

Once home my DF changed his mind and decided he wanted to die at home, surround by the familiar and his family. His choices were taken away from him by his health and there was no way we could deny him this small bit if control. It was honestly the best choice. Losing someone you love is awful but I’m glad he had his choice listened too and we did everything we could to ease the end. His passing was very peaceful and he was able to spend so much more time with our family.

I fell out with my mum at this time as I strongly supported my DF wishes, I’d do it again. I believe at that moment the dying person should be the focus, it will be hard and uncomfortable for those around but the person passing should feel as comfortable as they can.

Also to add to my last post, when I say the Hospice at Home carers will visit up to 4 times a day, quite often they won't be able to commit to 4 visits initially, as they are a thinly spread resource, which means more generic care agencies will fill the gap, some of whom are excellent and other's less so. Night sits are quite often sporadic too, only people paying privately for them get them for the full 7 nights a week in this area.

Im not under any illusions I’ve worked in four different areas and I am exceedingly aware of how overstretched we are. But if the OPs parent is unable to get a bed in a hospice and stays in an acute ward they are equally overstretched. Many of our families (obviously) have little or no idea about what dying at home can look they are worried that they will be left for many hours struggling with a relative in pain certainly where I’ve worked this is very much not the case. And OP says she’s been offered 24 hour care if this is someone in her parents home 24 hours a day that’s a lot more than we are ever able to offer.
what I’m trying to say is don’t dismiss it look at what is being offered first.

A close relative was in hospital, and obviously confused as from time to time she was coming out with comments that we knew weren’t true. When we queried confusion with staff, they gave us a look as if we were being mean about her and said they hadn’t noticed any problems at all. Some people can sound perfectly plausible in what they say unless you actually know the full circumstances of their lives, which nursing staff don’t, but they should believe the people who do!

There is a mechanism in the CHC process where six weeks of nursing home care can be provided on an assessment basis. We accessed this for our terminally ill relative through the hospital's palliative care consultant and social worker though it took some desperate phone calls to the consultant's secretary.
This was to give breathing space whilst care package was organised. In the event, once our relative was installed in his own room in a local nursing home (much calmer environment) and was reassured that everyone would still be coming to see him daily, he decided to remain there.
He didn't last the six weeks so we never had to go on to the actual assessment 😞.

@BrightTealExpert You can point blank refuse to take someone home. The hospital has to send equipment etc if the spouse isn’t willing or able to support the person for whatever reason the hospital will not just deliver a patient home. They would keep them in hospital until a hospice bed becomes available. I’ve been through this with my aunt.