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

I do too. It feels mean spirited in the extreme not to give someone who’s dying the option to spend their last hours in their own home. I know someone whose father was refused a return home to die but when his widow died she ended her days in her own bed. It was spectacularly unfair.

I agree with this.

OP, I'm sayng this as someone who has been caring for a DH in a hospital bed in the sitting room for 2 years, so do have some experience.

3 things really. First, it sounds like there could be issues about his capacity, given his statements about phone calls to relatives, etc. Capacity can fluctuate and you need to make very clear to medical and social work staff what he's been saying.

Second, I imagine this is 24/7 care under Continuing Healthcare. As you rightly say, this is not always easy to arrange seamlessly and there is the potential for gaps, missed/late visits. This means that if your DM wasn't present to at least monitor him when this happens, it would not be a safe situation.

Third and main point; if he does come home, there is no way at all your DM can be made to be present. If there is a clear, firm plan for her to be elsewhere (friends, family, hotel) the staff arranging discharge will have to take that into account and I think might well reconsider the situation. You would need to be very, very clear in letting them know this.

It's an awful scenario all round but your DM matters too and has the right not to be forced on to a path she can't cope with. Care is hard, end of life care especially hard and she shouldn't be judged for not being able to face this.

Good luck today.

You need to state clearly to the hospital that they cannot go home due to space, mental health, lack of anyone able to care. Keep repeating they cannot go home. Do they have keys? How would they get in unless let in? I have seen elderly people sent home from hospital and rarely do they have people to transport them inside properly etc. Hospices are amazing places that provide wonderful care for all the family. The dying person gets all the pain relief they need and it will be calm and peaceful. Keep saying no.

Hospitals are truly awful places for the terminally ill and I’m not surprised that your dp is longing for home. Hospices are very different because patient care is at the heart of their mission.

This sounds like healthcare trauma to me. My df died in hospital care because his transfer to palliative wasn’t processed. And while individuals were doing their best, they were hampered by a system that prioritises keeping people alive regardless. We had to beg for pain relief which wasn’t adequate and was never delivered on time. No one was able to make a common sense decision. Understaffing meant that basic care was neglected, and his last week of conscious life was a time of pain and humiliation.

Can you speak with the hospice and palliative team and see if they can help? If they were still asking to go home from the hospice that would be an entirely separate thing and I would absolutely honour that wish.

I’m so sorry @Whyismycatanasshat that you’re going through this.

I do not think you can prevent it.It is their home and their choice to make even if it is a bad or strange choice.

How many children are there? It sounds as though there are a few weeks left, at most. Could you stay with Mum on a rota basis, so she isn't alone with him? I realise that might mean time off work, but these are extenuating circs.

I’m so so sorry for your dilemma and your situation OP …. It sounds so sad and difficult and one I can imagine happening with my parents although it hasn’t occurred to me until reading your post. Reading all these sad stories and different experiences makes it very difficult to work out what’s best. I really wish you well and sending strength for you to cope xx

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.

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.

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.

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.

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'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.

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.

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.

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?

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.

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.

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

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.

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.

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

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.

Anything else is just about convenience for the family.

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