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.

I also think some of those saying dying parents wishes trump everyone elses have not had to actually do this. I had something similar with my mum who had sepsis 2 years after a major stroke, it was during lockdown, she refused treatment and wanted to die at home. I wish I'd fought harder for a hospice bed, looking back I feel I was railroaded by the hospital as no sooner had she said this they were busy planning for discharge. The so called hospice care at home was mostly awful as were the district nurses, bar 1. Thank god for Marie Curie nurses who attended for some of the nights and were able to administer pain medication as soon as it was needed and were really kind.
I really struggled and Im a nurse, I was on my own and she was in a lot of pain a lot of the time which she wouldn't have been in a hospice.

It’s really not that black and white. Patient knows their family love them and is refusing to take their calls as they are unwell.
home care if not always great - and yes, we are going through this with my FIL. He is often left in pain and discomfort waiting for his next carer who may not show.
I think love for a dying parent is about wanting the best for them, and OP clearly wants that for both parents.

Have read your replies but not the full thread- this may have been suggested already but what if you make it clear that your other parent is living with you 2 hours away, so it really will be a case that 24 hour care is needed? This might cause them to think about it.

I agree that if they have capacity they should be allowed to make the decision but if your other parent would find it this distressing then they don’t have to facilitate it. I would also ask for a second opinion, in writing, about capacity.

I also think this

This comment can absolutely fuck off. Cruel and Mumsnet at its worst. My thoughts are with you OP.

We went through this with my mum, she had been absolutely adamant from the get go she wasn't dying at home and wanted to be in hospice she absolutely did not want to die in hospital and if she couldn't get to hospice, home was the second choice.

It was a real struggle to get her in hospice but I was there personally every day to advocate for her. If I hadn't of been, I reckon she'd of been at home as they were trying to push her to stay home.

I reckon the hospital wants the bed and have likely told her the same schpeal we got - there's a waiting list for a place in hospice, its not guaranteed you will get a bed then the hospice nurse was then saying I think your mum wants to be at home are you sure she wants to be in hospice. I knew what she wanted and was absolutely adamant. Me and my sister couldn't of done it at home with her symptoms from her condition.

The best thing you can do is go and be there and be firm when advocating for her. When my mum took a turn and was in the active dying stage - suddenly I got a call the next morning that she was going to hospice and they were there within an hour. It was 100% the best thing for her and us as her carers. I hope it all works out for you.

As an aside my mother in law is being deemed to have capacity, despite saying her carers are aliens that are scared of certain domestic items that are protecting her and they are trying to kill her and injecting her with things (no ones injecting her) we are gobsmacked they are still deeming her to have capacity.

Er, how long is ‘dying’? Your problem happened to a friend’s DF. Friend took him from hospital with a few days to go - he was 95.

Five years later DF was still in the living room. He was turned, tube fed, nappies changed by 1x daily carers. (DF had a heartbeat, that was about it).

Our local hospice took him for a fortnight annually, which is now standard practice as dying can be as long as a piece of string.

Well good for you but I have many regrets about how my mum died, uncomfortable and in pain.

Can I ask if it's possible at all for your other parent to stay somewhere nearby? Is there anybody who could take him or her in? (And please could we make this easier and know which is which - mum or dad?)

I've not read every single thread but my gut reaction is 'If we can't have a say in where we want to die, without a family arguing, that's pretty shocking.'

This isn't about you @Whyismycatanasshat
Or the remaining parent.

Being very blunt you're going to have to suck it up and let your mum or dad (whichever it is) have their choice of where to die.

I've experienced my late gran dying at our home (from cancer) when I was in the middle of school exams (decades ago.) It was peaceful and she was asleep mainly on drugs.

I also have close friends whose husband, and father, both died from cancer at home with 'hospice at home' care that worked well.

I think you need to try to stop controlling this and allow your parent the choice over their final days.

Even if Relative does has capacity, the law says his best interests don’t override anyone else’s.

NHS always forgets that bit, cos it’s cheaper.

Is it possible your dying parent is assuming your other parent is willing and able to provide care. While I think your dying parent has a right to choose where they live and die, and should be supported in that, your other parent also has a right to absent themselves.
so if you explained to the hospital that your surviving parent could not cope with their OH dying at home and will move out, that would probably alter their plans. Your surviving parent could move to a residential home for a brief stay, or to your house. It would probably just be a bluff but honestly I would stand firm on it. I wouldn’t care
what people think about it, they might think you are all heartless, but it’s easy to think that when you are not up all night alone with confused suffering loved ones.

I don’t know how poorly your dying parent is, if you are looking at months, a nursing home might be best. In our area hospices accept patients with a week or so left to go, they are very full and very strict.

It's not cruel. It's the truth.

How rude of you to use such language simply because you disagree.

I would be very careful about the care promises made by the hospital staff who frankly want your parent off the ward to free up a bed.

My Dad died 18 months ago. He had pancreatic cancer and also in his last weeks of life, had a stroke. He ended up on the stroke ward. There was no joined up care and nobody considering how desperately ill he was from the cancer.

Dad wanted to come home but he needed two nurses and equipment to go to the toilet. Mum wanted to do what he wanted of course but I had to step in and make everyone face reality. we were told we would have carers X4 a day and Macmillan could come at night. When I spoke to Macmillan they said the reality was you might not get X4 visits and Macmillan staff would not be there to do toileting etc. I would be amazed if you can have someone there 24 hours, unless you're able to do this privately.

We were told about hospital bed and joists and occ health were supposed to come and assess the house. I had to ask them bluntly what would happen if dad tried to go to the toilet at night when nobody was there to assist and they were honest and said he'd fall and end up needing an ambulance.

No way at all Mum could have done this and coped. She couldn't have helped lift him.

What the hospital put our family through (a catalogue of other stuff) was horrific. They were trying to get him to go into a nursing home instead on the Tuesday. I was told he wasn't ill enough for a hospice. The consultant finally saw him Wednesday and said he was too ill to move. He died on the Friday.

If you can get hospice care, I absolutely would.

Unless your parent is significantly more mobile and your other parent can cope, then I would not agree. But I know how very hard it is to say they can't come home. It broke my heart.

I think a lot of what you are saying comes from genuine concern for your other parent but as to whether coming home now is the right decision depends on a few things the biggest being what their prognosis is, hospice beds tend to be used for getting meds right, stabilising patients and the very end, not for months at a time these days. My grandad came home against my grandmother's wishes but the hospice nurses came to him multiple times a day plus district nurses visited daily and a carer paid for by the nhs came in the morning to wash him. It was very peaceful.

OP I’m so sorry for what you’re experiencing and for the loss of your brother. You are absolutely right to push for your dying parent to have a hospice place. I agree with the previous poster comment that going home doesn’t necessarily mean going to one’s home address. Your dying parents last coherent wishes were not to die at home, this is a tragic part of cancer affecting people’s personalities. Good luck and sending you strength for the days ahead x

@Whyismycatanasshat You need to investigate Hospice at Home.

No matter that your parent has changed their minds. We are all allowed to change our minds on anything but especially where we want to die.

The fact your other parent is vulnerable isn't really the point.
That- to be blunt- is their issue to own and manage maybe with medical support for that.

My Dad died in hospital. My mum wanted nothing more than to bring him home. But he became so weak that the moment when he could have been moved, was past.

It broke her heart that he died alone in the middle of the night without family there. She'd been with him for days, and days, but at 92 she couldn't cope with 24 hour 'caring' and did have to go home to sleep.

We cared for Mum at home - it was her wish tho - and we had no carers because her condition took a fast downhill turn.

If you have carers coming in and a hospital.bed sorter, try and arrange time for your family to visit and help out too. Its the last days/weeks/months, so treasure the chance you have to care at this time.

Honestly, I look back on being with Mum at the end as a privilege.

I would be very careful about the care promises made by the hospital staff who frankly want your parent off the ward to free up a bed.

You don't need to rely on the NHS for this.

There is Hospice at Home, and also private nursing that can be used as well as or instead of the NHS.

I’m so sorry you are all going through this.its incredibly difficult.
Have the hospital team also made clear that if something goes wrong at home like carer breakdown then your dad could well end up back in hospital in his last days anyway? or even worse in an ambulance or hospital corridor?
is that a risk your dad is willing to take?
I do not say this lightly as an ex hospice nurse and someone who cared for her dying mum -but are you or any of your siblings able to help on a regular basis despite the distance? As you’ve alluded to, the wish to die at home and the reality are unfortunately quite different sometimes. Sending love

Having experienced both too but with private carers not doing the nursing rather than ourselves I still think the experience is far better in a hospice. My father took nearly two weeks to die at home. He wasn't conscious for most of the time in any case so wouldn't have known if he was at home or in a hospice. The hospice was a lovely, calm environment. There was someone there 24/7 with any issues. It was far more dignified and pleasant.

The thought of a woman in her 80s having to deal with all the issues around the carers and having all of that taking over her house is just appalling.

I would also suggest that you say your mother would not be on site to manage things and so going home is not an option. I agree that the hospital is trying to free up the bed so is putting pressure on your father in his confused state.

It's worth saying that there won't necessarily be a bed at the hospice, and certainly doubtful if the person has weeks left to live. They would more likely end up in a nursing home or residential home with district nurse input when needed.

Does anyone have power of attorney for either parent?