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

I have to say that for us, my late DH's death at home was exactly that. Gentle and peaceful. But I've always recognised that we were exceptionally fortunate.

OP 's parents are in an entirely different situation from my family's, and it just isn't going to happen that way.

This. Anyone who thinks a death at home is a comfortable, peaceful, family moment has clearly never nursed someone to the end.

The dying person may want to go home, but they probably don't want to spend their last days in pain, struggling to breathe, to swallow, unable to get even remotely comfortable, unable to sleep. They would probably also want to spend their last hours with their loved ones as husband and wife, parent and child or whatever, not as patient and carer. I'm all for respecting their wishes but you have to consider all of them.

I initially wanted to bring my parent home to die but the reality was they were doubly incontinent and in severe pain. The care package on offer most certainly would not have been sufficient for us. Hospice allowed us to spend precious time with them and chat. Be a family, not nursing staff.
Not lifting, turning, changing nappies and worrying about medication and syringe driver.
It was a beautiful place and I’ve told my DH that when my time comes I want to die there.

What is wrong with you? This thread is really depressing. How can people not understand what's going on here. How can people have such a lack of basic comprehension and empathy.

We're now talking about a vulnerable elderly woman who has been hospitalised herself. End of life care is exhausting and frightening and physically demanding. Even with family members in shifts, you don't know how long it will go on. It's not the sweet and peaceful sitting around a bedside in movies.

If you haven't been there you cannot possibly understand. But really do try because these nasty comments are just beyond the pale.

Empathy for the dying does not mean we can't look at the whole picture and care for the living.

Thinking of you @Whyismycatanasshat and sending you strength.

My mother had a morphine patch and a syringe driver plus sedatives because her blood cancers meant she had a tolerance for opiates, built up over some years.

It was complicated dosing. I was grateful not to be hanging on for visiting nurses when she became uncomfortable. I was glad someone was on hand during the night with authority to increase doses.

the real crux is that when no family is present the context in which the dying person says "i want to go home" is unknown.
as so many have said it may mean to an earlier time in their lives, it may mean back to their mothers loving care or even spiritual home. it may be a request to go home because the ward they are on is noisy busy and no one answers the call bell. they may say that because they know that is the usual expected response and were coerced.
it's not unknown for staff to make mistakes and the comment may have been made by another patient or the statement to be exaggerated and possibly made under the heavy influence of drugs/dementia/delirium or staff pressure due to other issues.
before family blindly agree to any move from hospital to home (vs respite/hospice/care facility) family need to be present and evaluate the situation for themselves knowing the family history and dynamics.

Sorry, I posted before reading @Unescorted’s posts.
So sorry 😔

This person is dying…
Their wishes trump other people’s ability to relax.

And not with a patch. 🤷‍♀️

Depends what it has been set on, it may need to be increased

If they're on a morphine syringe driver, they absolutely do need someone to come out to adjust the dose.

There’s no excuse for it when morphine patches are available. Nobody needs anyone available for pain relief.

So is mine. Which is why I would never again watch a pain die screaming in pain because there was no one available to help with pain relief.

If you put a dog through what I witnessed you'd be taken to court.

What an awful, awful time for all concerned. Usually I would say the wishes of the dying should be accommodated but this sounds a very complex situation. My worry would be that the 24 hour care won’t be 24 hour and a lot will fall on the other spouse and children. You need to be prepared for end of life care and what it entails. I’m really very sorry for the OP, her parents and family.

There aren’t many people who don’t have empathy with someone who is going to die imminently. Who wouldn’t want them to have a peaceful, pain-free end? But I have even more empathy for the people who will go on living afterwards with the memories of their loved one’s death.

Achieving a peaceful, painless and dignified death at home is very much a lottery going by the experiences on this thread. OP and her parents already have experience of the end of life process in their locality and so they know what to expect and until now the choice was hospice. OP was right to push back on discharge to home. I hope she is ok.

@Whyismycatanasshat I don't know if you work but it might be worth seeing if you can get signed off for a week. Sounds like you have an overwhelming amount to deal with

My empathy lies with the person who is dying. I make no apologies for that.

But it isn't just them wanting to die at home is it? It is forcing the other parent having to do something that they don't want to do ie watch someone die and have to deal with carers not showing up etc.

Why on earth should the other parent have to do that when they don't want to, especially as they have seen what happens with other relatives.

Yes, those pesky selfish people wanting to die at home

Very sorry to read your update and sending you love and strength x

So sorry to read your update OP. I hope you're managing to cope as best anyone can at a time like this. 💐

The number of times I’ve seen a HCP talking with their backs to my nearly deaf, lip reading relative…

I've seen this all too often to. I know they're busy but if we didn't take account of people's disabilities in my line of work we'd be sacked.

Not surprised at all.
Doesn’t seem unreasonable to me to assume most very elderly people would have some degree of hearing loss.
The number of times I’ve seen a HCP talking with their backs to my nearly deaf, lip reading relative…

I've just read your latest updates. So sorry that both your DPs are now in Hospital