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.

So sorry to read your update OP.
I fear you have more trouble ahead. You may well find your parents have been propping each other up and the one who will be left can't manage independently.
The fact they are frightened by having "strangers" in the house does not bode well for when they need carer support themselves.

I think it's time to sit down as a family with your parents and have a frank discussion about plans for the immediate and longer term future

Good luck OP. It's tough and I hope your siblings are supporting you.

Look after yourself too, or you'll be no good to anyone.

@Whyismycatanasshat I'm so very sorry. I am thinking of you all today and in the coming days.

Elderly and end of life care is a huge mess, folks delude themselves about the support available, which I think is a coping mechanism in itself. It's better to face it - as you have been doing.

OP just sending love and solidarity. I have had adjacent experiences and you are in a particular kind of hell.

Every situation is unique and intensely personal but the emotions attached are intense on all sides. Often there is a sense of helplessness and being unable to do right for doing wrong, compounded by medical incompetence and bureaucracy and yes, perceived cost effectiveness over dignity and safety.

I send you unconditional love, strength and solidarity, with absolutely no judgement x you know your and your parents situation better than anyone else. ❤️

I'm sorry - though sadly not surprised.

I suppose it's a minor positive both are in hospital so in a safe place- and it has to help you with saying firmly no to dying at home option.

Hopefully a hospice bed will open up soon - it is by miles the best option just some area have too few spaces.

I've just read your update. I'm so sorry to hear that both parents are now I'm hospital. Sending hugs.

I have challenged the capacity test done in the past with DFIL. Turns out they did the capacity test wearing a mask and took no account of DFIL being deaf. He's a people pleaser so just said yes to some very leading questions like ""you want to go home don't you Mr Polaroid".

Second assessment was done with a different result after a fair bit of me kicking off and a lovely Nursing Home was found for him instead.

This x1000.
As an ex district nurse I would never ever choose to die at home.
I'm sorry to hear about your parents OP.

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

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…

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.

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

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

Yes, those pesky selfish people wanting to die at home

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.

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

@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

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.

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.

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.

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

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

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

And not with a patch. 🤷‍♀️

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