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.

Hospice places are as rare as hen's teeth. When my husband was terminally ill, I naively thought that anything who needed hospice care would get it. But no.

My DH wanted to die at home. My heart sank when he said so, as I wanted to protect our daughters (20 and 22) from that. But we respected his wish and we were able to provide the peaceful end that he wanted, with the minimum of trauma to us.

BUT there were three of us at home to share the care, and we were well supported by district nurses, Macmillan and Marie Curie nurses. I was not a lone 80 year old with mental health issues and a fear of other people in the house. Those here saying that only the dying person counts, are being unfair.

Yes, the hospital will be encouraging the parent to die at home. They need the bed. You are going to need all the help you can get from your other parent's SS contact @Whyismycatanasshat . Good luck.

Hospital staff do not coerce dying people into anything. The nurses and medics on the ward also do not give a shit about which option is most expensive. They have asked your parent what they want and now must follow this decision. Your parent likely does have capacity for this as it is a very low risk decision as they will be supported by 24 hour care. I think you are being very cruel to over ride their last wish. It is your parents house not yours.

What is very upsetting about so many posts here is that the posters think they know best.

I would hate my kids to decide where I should die and take away my choice, if I was well enough to make it.

I am sorry but I think it is utterly wrong to deny anyone with mental capacity the choice of where to die.

Anything else is just about convenience for the family.

It is her other parent's house too. And the other parent is elderly and with mental health issues.

As I've said above, I nursed my own husband so that he could die at home. I'm all in favour of providing that kind of death. But this situation is very different from mine.

I agree.

100% this

And will the surviving siblings bit be travelling to visit? I understand 2hrs is not just round the corner but hardly the other side of the world either

Not sure if you’ve asked this to be moved but there are very supportive posters (and threads) on elderly parents and carers sections.
There are some on here too of course and main advice coming across really is to be very very firm with the hospital - they really are like the original double glazing salesmen tbh as getting someone home is their priority at minute.
Best wishes again OP.

The other parent is not dying though.

Why is this all about 'them'- the other people?

So selfish- all of them.

Anything else is just about convenience for the family.

Since when has protecting someone with mental health issues been "convenience"?

My dear dad died at home, as per his wishes earlier this year, it was fine, the NHS were superb, supplied all the equipment (bed etc) and the hospice nurses were in and out all day every day.

Its up to them if they want to die at home, let them have their wish.

I am sorry for your situation.

However:

1. As others have said, it's about the dying parent, not the surviving one

2. Imaginary conversations on an imaginary phone does not mean someone has lost capacity - it's a high hurdle for someone to be deemed to have lost capacity

3. People do (and quite often do) change their previous stated wishes at end of life

4. What is the end of life care service being provided at home? Some areas have a service called 'hospice in the home'. It is as it says on the tin. I cannot speak too highly of it

Have you supported someone dying at home? Have you experienced your 80 year old parent having to support someone at home dying? Are you a healthcare worker or other support worker who has had to talk through a difficult home death with a family?

This is not a simple problem with simple solutions.

No matter how you try to defend it, the choice here is with the person dying.

We've no idea what the MH issue is with the other parent. It may be not even relevant but the OP is using it try to justify her own wishes.

You need to separate out the 2 issues- the wish of the dying parent and the way the remaining parent can cope (and therefore get medical help for them if needed.)

One parent with some issues don't 'trump' the wishes of someone dying IMO.

In the real world when people live 2 hours away, have children, jobs and caring responsibilities and the family home is a 2 up 2 down, how do you really propose that working? How are you helping the OP with comments like that - you sound judgemental and callous

I have experience that is relevant like a 95 year old father dying from dementia and family supporting my mum (90) in his last weeks.

And my own parents, 50 years ago, taking in my Gran who died in their bed from cancer while they slept on a sofa bed. And I was still living at home, doing my A levels. Because none of her other children wanted to anything to do with it and wanted her to stay in hospital.

As you asked.

Why is everyone ignoring the fact that the other parent is vulnerable and with mental health issues that they already receive support for?

Even if one didn't care about their well-being, it's questionable whether they can actually provide the care needed.

There will not be a carer in that home 24 hours a day. All I got was four carer visits a day, plus the district nurse. And a Marie curie nurse for the last two overnights (which was a stroke of luck, as they're also like hens teeth).
The spouse is clearly not able to do the rest of the caring.

It is not correct to say that only a social worker can assess capacity. In fact any professional can assess capacity. Capacity is time and decision specific and can fluctuate. If your parent was assessed to not have capacity then the prior wishes and feelings would be relevant but if they have capacity it is what they are saying now that matters. Has your other parent been able to go to the hospital to discuss their concerns with your dying parent?

There are two peoples needs to be considered and one does not trump the other. OP should advocate for her mother. And also the best interests of her father. He won’t care the care at home that he needs.

I agree. I can understand why someone wants to die at home, in familiar surroundings. it's comforting. My mother-in-law did and died at home, we were glad. There's nothing to be scared of, it would be wrong to insist on a hospice at this stage. Good care will be provided.

I'll add that from my experience its not in any way scary or traumatic, mum (who's 83) and I were here with dad, it took 2 weeks for him to pass, the last of which he was effectively in a coma.

He died peacefully, in his own room at 3.00 in the afternoon, the hospice staff came and took all the medical bits off him, the local vicar came in the evening, we all sat with the body and said a few prayers (we are not religious, but it was very comforting) then the undertaker came next morning, and that was that.

Dad got his wish to die at home, which would 100% be my wish having seen it.

It’s not all about the dying parent if the other parent is at risk of illness from
caring.

Caring’s a sacrifice, not a suicide attempt.

PS He’s dying. Wife collapsing won’t bring him back.

I agree, I think it’s naive to believe full 24 hour cover will be provided. A lot of the caring will have to be undertaken by the family. I would also worry about pain management at home as the illness progresses.

Have they been given an amount of time left? If it's less than a couple of months, I'd say let them have their final wish. I'd like to think my relatives would respect my wish to die at home.

My dad died at home with cancer. With a hospice nurse coming every so often.

This is what I was going to say. Surely they can’t send the other parent home if there is nobody there. You have my sympathy. What a horrible situation.

What is the end of life care service being provided at home? Some areas have a service called 'hospice in the home'. It is as it says on the tin. I cannot speak too highly of it

I think this needs checking, each area will have slightly different services on offer. Locally, Hospice at home are Health care support workers who go into peoples homes and provide personal care up to four times a day. They are not able to give medication as an injection, such as pain relief or for agitation, they will contact the district nursing service who will attend to give this. Marie curie night sitters in this area are also often Health care support workers who again cannot give injections, they will also contact the District nursing service. Every area is different.