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.

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

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.

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.

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.

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.

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.

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

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.

of course it can be peaceful and calm, my hospice supported many people to die at home … but having equal access to high quality palliative care is a postcode lottery and it has to be something the family want to do ,not for it to be enforced or done only out of duty.

Just to add. I'm not suggesting that death has to be like that, but you do need to be realistic about whether it's likely that your loved one will need a lot of support, and if so how easily and quickly it's available in your location. I'm sorry if I added to anyone's worries.

To draw this somewhat decisive discussion to a close, my parent passed away on late yesterday.

We never had to fight a battle, the dying parent never mentioned coming home from the next day onwards but asked when they would be going to the hospice.

A wonderful place to leave us all from.

So sorry to hear that OP. I hope your surviving parent is recovering. 💐

@Whyismycatanasshat my condolences x

That was a tough call for everyone concerned @Whyismycatanasshat

Thinking of you and your Mum 💐

I hope your parent's death was peaceful, @Whyismycatanasshat and that the other parent is coping, and recovering from their own ill health.

I imagine that things will remain stressful in a different kind of way, and wish you well with the next few weeks and months.

I’m both sorry for your loss and relieved that you have been spared more heartache and stress.

my condolences @Whyismycatanasshat

Sending you love. Take care of yourself.

So sorry for your loss @Whyismycatanasshat but pleased that you have been spared more angst about how to go about sorting the issues. I hope your other parent recovers and gets home soon, although that will bring other difficulties with it. Sending hugs 💐💐

So sorry @Whyismycatanasshat take care of yourself.

I'm so sorry for your loss. Maybe it was for the best that events took over. Mum wanted to come home but I am relieved that she didn't manage it, because it would have been totally the wrong thing to do. She was waiting for a bed in a hospice but didn't make it out of hospital. At least there, she had proper nursing care, pain relief etc whereas hospice care where she lived was at best patchy.

I hope your remaining parent will be ok, and you too of course. It's shit xx

So sorry @Whyismycatanasshat, may their memory be a blessing. Hope your other parent is doing ok.

So very sorry for your loss xx

I'm sorry for your loss OP

So sorry, @Whyismycatanasshat . May their soul rest in peace.
How is your other parent? Discharged? Getting better? How are you?
Can't imagine what you must be going through. Sending you strength.