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

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.

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?

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?

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

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.

This is complete fantasy bollocks .

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

The system isn't set up to provide the kind of round-the-clock support people perhaps imagine can be provided. Not for everyone, not everywhere.

Those of us who have been through this in recent months are generally saying the same thing.

Not in my experience. There was a palpable reluctance to give any effective pain relief until the very last minute. It wasn’t a pleasant few weeks I can assure you.

@Whyismycatanasshat following with interest as an ex hospice worker…true 24 hr care for an extended period at home in the uk is actually rare ,because most people at the end of life need 2 carers at a time for moving and handling ( but fab if that is available in your area) and if the other resident of the house is against the return home probably even rarer. Often hospice at home services are there in addition to family members to eg. give the family member a chance to sleep. So I would really make 100% sure if what the hospital says is available, is actually the case!

As above, I know someone who moved into a nursing home for his final 2 days. He had cancer and this was the only way his pain relief could be managed effectively outside a hospital setting. The staff were very kind to him and he had visitors all round the clock as he said his final goodbyes.

Do they have to go to Hospice? When my dying parent changed their mind about staying at home, our local Hospice was full. We found a garden room in a Bupa nursing home (which was actually really lovely) and parent died there. The staff were so kind and very knowledgeable about end of life care.

Parent died the day after arriving, almost as if they had held on just to be moved. It is very traumatic moving them though, so it does need to be resolved quickly. Our local Hospice team organised the transfer and liaised with the Ambulance Service and Bupa home.

Everyone projects there own fears in these situations. It what they want for themselves if they were in that position - you can't do that (I don't want that to happen to me) sort of thing.

Its okay to say the dying need their wishes to trump everything? It sounds in this situation that there will not be adequate care for them at home. An elderly partner who cannot care for them and can't cope with them. Family that cannot provide support 24/7. My grandfather managed to die at home recently but he had my aunties caring for him around the clock with medical support near the end.

In this case, they need to stay where they are or move into a hospice. I would not want my loved in pain waiting for medication if someone didn't turn up.

OP, please request an urgent meeting with the consultant in charge of your parent's care - in my experience (worked as a doctor in both Geriatrics and Palliative Care) this is who you need to talk to. Explain that your parent is having delusions about speaking with deceased family members and you're worried about their ability to make important decisions around their own care. Tell them that until 24 hours ago they were adamant that they did not want to die at home and you're concerned they've been put under undue pressure to change their mind. And explain that your other parent is not in a position to have them at home regardless of the level of care put in place.

Simply not true much of the time, as many of us know from painful personal experience

It is also horrible for a person to be in agony without adequate pain relief because district nurses haven't turned up.

My family had gripes about district nurses but TBH they were better with pain relief and getting it than some wards.

My family are scared by poor care on some geriatric wards where they left my Dad in pain screaming for hours or forget time and again to give prescribed pain relief before dealing with ulcer's leaving my family devastated and desperately trying to sort situation. Some wards were just awful and lacking in basic care.

Hopefully Op parent is on a cancer ward or a good ward where pain relief and general care is good - it's fucking awful but bitter experience has taught my family that sadly not a given

Hospital social worker was really good with DH uncle - his sons and rest of siblings washed hands of him and FIL own health meant he was reluctant to get involved too much - so SW was instrumental in getting him into a home.

You do have be be very firm and very clear - that home set up proposed isn't an option - it will likely need to be assessed to confirm - and hope another option is offered.

I'm afraid this just isn't always the case, as many of the stories here indicate. Adequate medication is not always readily available, and many discharges are rushed.

What people think is best is really neither here nor there.It is a legal matter.

Being blunt doctors used to be able to hasten the end of life for a terminally ill patient when they judged that to be in everyone's best interests. Sadly Dr Shipman put paid to that.

Yes but that is your choice.This is his!

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

they had to get on with it, and you want people to suffer like that again? Not every slips away peacefully, it’s noisy and disturbing

These are charity based so depends on donations, although they can be called upon they are unlikely to be present until the final 3/4 days. Then it will be night time, not day time as they are spread thinly.

I have helped nurse a dying relative at home. 5 years later and all of us who helped are still borderline traumatised from it. With the best will in the world, and a team of willing family volunteers, it was a nightmare juggling professional carers and nurses. There were many crises which needed medical call outs in the night. There were many times when carers were late, or couldn't come, and we (non medical) relatives had to try to do our best. I came home after the funeral, and made it crystal clear to my immediate family that if I get near to dying, I want to be in a hospice and drugged up to the eyeballs. On no account do I want to cause all that difficulty to the people I love the most.
It is never as simple as the hospital says. They want their bed back OP!

The MacMillan or Marie Curie teams, or something like, will be involved, the hospital will put everything in place before discharge. The patient will not be reliant on the District nurse. Adequate medication will be readily available.

In our area the district nurses are the ones who provide this, not the Macmillan nurses or the Marie curie night sitters. Those teams provide different services and not generally, medication administration, they rely on the District nurses to provide that.