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

[Whyismycatanasshat]

I need to ask if anyone knows if there’s a way to stop my dying parent coming home to die instead of going to a hospice.

Long story. My parent is dying of cancer which has spread and has been hospitalised, waiting for a hospice bed.
Parent has always, always said they wanted to die at a hospice. 100% not at home. Even pre-cancer.

Today my other parent was informed that dying parent wants to come home and care would be organised.

Dying parent says they’ve changed their mind.
Hospital say dying parent has capacity and has rights to change their mind.

We have questioned capacity as we think it’s lacking and has been for some time but hospital say they have capacity.

Hospital say hospital bed will be provided: carers will be there 24hrs a day.
Other parent (early 80s) does not feel they want dying parent at home.
They have expressed feelings of vulnerability about having carers (“I’m worried about having strangers in the house with me. It frightens me a little.”) and knows from my DBs passing that the 24hr care at house doesn’t always happen as planned - there was several no show carers. Which was horrid.
Also, they feel they will have no place for respite themselves - they are struggling mentally at the moment - as dying parent will be in the living room of the 2 up 2 down house and all surviving children are at least 2hrs away.

Is there any way I can help my parents in this horrible situation?
As awful as it sounds, I think a hospice is the right place for dying parent and other parent needs to be considered too.

I have already commented with our experience in this but I wanted to come back and say that I have found this thread strangely comforting. I think people who have nursed loved ones at home through cancer end of life are in some sort of strange club, changed slightly forever by the experience. I’m sorry to hear people’s stories but I also feel less alone. None of my sisters will talk about it, and I wouldn’t want to burden anyone else.

Take care OP, my thoughts are with you

This is complete fantasy bollocks .

Not always. This was pretty much what was rolled out for my dad when he was approaching end of life, in fact he was kept in hospital until it was all in place. Sadly things didn't go to plan as he had to be hospitalised again after an unrelated crisis, and he passed away there, but the care package that had been put in place was pretty much as pp described.

Yep. We only got Marie Curie help on the last two nights, because someone else that she was caring for, died sooner then expected. We'd initially been told there was no chance.

Someone up thread mentioned Hospice at Home. All they could do for us was provide someone (medically unqualified) to sit with him for a few hours on two occasions. Once so that my DDs and I could go out and spend time together away from it all, and once so that I could attend a carers group.

All these charities are severely limited in their availability. I was really shocked. I'd always had the impression that they were there for anyone who needed them.

Seriously, some people in this thread are living in cloud cuckoo land.
I genuinely think that we were lucky in the support we had. But we were three fit and healthy people, one training to be a nurse, and in a house with a spare downstairs room for his hospital bed. We were also lucky that he was a calm and appreciative patient, and we had no emotional or medical dramas. He died very peacefully.

I can't imagine an 80 year old person with mental health issues, managing with the amount of help we had. Especially if things don't go as smoothly as our experience did.

All the best @Whyismycatanasshat

Generations back, most people died at home.
And there was far less pain relief.
Families just got on with it.

I'm not sure that there was much choice was there?

I have significant experience with end of life care situations. I wouldn’t have said my piece if I hadn’t. What makes you think other posters don’t?

I can completely understand not wanting a hospital bed in your living room and carers there 24/7 as well as not wanting your spouse to die in your living room. I’d be tempted to get the locks change and take your other parent to your house so if the hospital try to send them home they can’t get in.

Love this! 🤣 At least it balances out all the "how could you be so heartless" posts.

Perhaps consider adding a few sentry gun turrets too?

Have you ever been through this scenario yourself?

Sadly we had no information on that and no time to arrange it. And then he was too ill to move within 24 hours anyway.

I hope if @Whyismycatanasshat has time, then this would be helpful.

Being blunt people went hooting and hollering

heroin has its uses

People saying that dying at home will be peaceful and medicated are missing the bit in the OP where they have previous experience of this with the brother and it was very much not the case.

It varies by area what is available and it can be the case that family are left alone and frightened with a dying person who has not had pain controlled and is very agitated in the middle of the night and can't get hold of anyone to prescribe medication in a timely manner.

It sounds like that was the OPs and their families previous experience.

I have experienced a parent dying in a hospice and this was a calm environment where the family felt supported rather than abandoned, which can be the home experience.

Hi

Not read all posts but I've definitely had patients who's family at home have refused them to come home for EOL care. I would discuss with hospice they may be able to make sure you mum gets some support as well.
I'm sorry for a sad situation

But it isn't really the OP that will have to 'suck it up'.

It is the other elderly, vulnerable parent who is alone at home, and will be reliant on carers showing up on time to take care of their partner. Who will be scared of strangers turning up, and also frightened that they will not turn up and that they'll have to provide care they cannot provide, and so will have to watch their partner in discomfort or indeed in pain, potentially for hours on end.

This isn't a 'suck it up' situation. The other parent does have a right NOT to watch their partner struggle and die in their home.

I respectfully disagree.
I actually think this is more about the non-dying parent

I respectfully disagree. Its their last dying wish. Surely the best option would be to move the non-dying parent elsewhere for a period of time.

So who will look after the dying person?

Home cared is preferred by powers that be better because it costs less as it relies on family being unpaid carers.

Op says hospital says they will. This is not the same .

It doesn't happen. Carers don't turn up

@MissDBus

OP says hosp would arrange 24hr home care.

Do you know what that means?

Having seen the shambles that is EOL at home care, there isn’t a cat in hell’s chance that I would a) believe a word the ward staff say about arrangements being in place to allow dignified death at home, b) allow an 80+ year old vulnerable parent to be put in a position where it’s foisted on them without them having a say.

my friend had a similar situation.

dad had dementia, and had had a fall and was in hospital. he wanted to come home. mum could no longer care for him.

He was assessed and because he had a good day and said he wanted to go home, that was then the plan.
But he only had occasional good days and the testimony of the nurses that he was mostly not able to recognise his family didn't count because on the day he was lucid.

So plan from hospital was that he was coming home, and needed carers, twice a day, couldn't be left along at all and a lot of other things.

My friend went in to the hopistal and got it documented that if he came home, mum wouldn't be there. She would come to live with daughter. So he was coming home to an empty house, please re-assess. Suddenly they could no longer send him home.

I suspect that they cannot send your dying parent home to an empty house, because they cannot provide round the clock care, and they need round the clock care, so I would say - assess them as if they are coming home to an empty house.