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

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.

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

I also think this

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.

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.

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.

Living parent can and should just say no that is not happening. Tell them straight the door will not be answered and access to the home will not be given.
i know this sounds harsh, but health make lots of promises that don’t happen and your surviving parent is going to be the one left to carry the can. This is due to a lack of hospice beds and a cheaper alternative at play, imo , not the choices of a dying and hallucinating patient.

As soon as you mention the relevant case law and tell them that you are considering suing them, they start to give an awful lot of figs!

In my case, the ward sister rang the Consultant and made him return to speak to me and arrange further tests on my dying parent. He’d already signed off his shift an hour earlier and had left the building and was meant to be on holiday for the next fortnight, but we all knew he’d taken short cuts in mum’s care and I wasn’t going to let that continue.

Handy that I’d studied Medical Law as one of my options in my first degree!

I don't know if this has been mentioned to you, and I really don't want to sound crass but it's a possibility that when some elderly/very ill people talk about wanting to 'go home' they are really talking about dying. I was told about this but also saw it myself as when I got my ma home (to her house as I knew this was what she wanted previously btw) she was confused for a couple of days and kept saying she didn't think 'home' would be like her home.
It's terribly draining just physically having someone on end of life in the home, and my mum had heart failure/pneumonia so not in dire pain already. The hospital however was rammed on that ward and pretty dreadful so anyone would have wanted to leave it tbh. So it could be that?
There was a hospice ward at the hospital but there had to be a bed available of course!
I do think It's resource driven mostly unfortunately- I think they'd have been ok to leave my mum on that awful winter ward to pass away in a few days they thought (though she lasted a good few weeks once home) but a cancer ward will require beds more desperately of course - there seemed to be very strict criteria on actual hospice care as whilst she needed 24/7 monitoring and had 6 care calls plus many district nurse calls and call outs the palliative team told me firmly that she didn't actually need a hospice bed or meet requirements - I'd not even asked actually just asked if I could have a few hours respite to go to my own hospital appointment. But that was a very clear message I always got - the additional support at night kicked in night before she died when it was finally a priority.
There are some excellent support threads on elderly parents. Thoughts with you OP.

The caveat to this is that this service may not look like this everywhere. Within the NHS we sometimes assume the care we offer is the same elsewhere but the resources aren’t the same.

We can’t promise that this is the support that would be available locally to this family. The OP would need to assure herself of that. Her concerns are often played out in real life where people struggle to access symptom relief and support when they need it most.

Death at home can be a positive experience for many families with the right support and where it feels right for the main people involved but it can also be traumatic without the right support and where key family members don’t want this.

Have you been in to the hospital to speak to dying parent about this? I suspect they just want out of hospital and don't want to die there.

You really need to go to the hospital and have a meeting with nurse in charge, discharge co ordinator and your dying parent.
Then you can all discuss dying parents wishes have always been to go to a hospice and that going home won't work and the reasons why.
Your parents are elderly and vulnerable and need you to advocate for them

Refuse to have them home

All these posters which are saying come home have unlikely coped with a dying person and unreliable carers. I'm sorry about your DB, and I can believe that after witnessing that your DP doesn't really want to be at home.

The reality is you won't have 24 hour cover, you will have no idea when you will have cover.

When the pain becomes unbearable and you have to call for support you might wait hours.

There is no dignity in dying at home without a fully functioning medical service/support

I'm sorry you are going through this. The hospital just want to discharge, they don't care where they go.

I'm so sorry that you are in this situation, it is unbelievably hard. It could be that hospice don't have capacity at this time to admit your parent, or that he does not yet meet their criteria for admission.

RE: your parent's capacity...they assess capacity for specific things. So someone might have capacity to decide on discharge destination but not to manage their financial affairs. Something to bear in mind. It could be that patient has expressed wish to go home, and team looking after him are just assessing the feasibility of this.

RE: 24hr care at home for a palliative patient. I have not heard of this happening within NHS unless family have paid for it. A double hander, QDS (4 times a day) package of care, yes. You can get community hospice team (in my area) and district nurses too, but I don't think even they would be able to provide 24hr care at home. But things could be different in different Trusts and regions (so I might be wrong there!).

Going forward...I would speak to PALS, ward team and palliative team in first instance. State that family are NOT able to provide any care at home (either during care calls or between them). Mention the vulnerability of other parent. With respect to hospital bed in front room, it could be that when this is assessed, it might not be suitable/safe even if it is the patient's wishes (there might not be enough space). If patient cannot transfer to a commode, then they would need all care in bed, particularly, if a hoist doesn't fit in the front room..along with a commode. If patient is bed bound then they usually require two people to give them care (particularly if they are not able to reposition themselves independently in bed). If they need hoisting, that will require two people. It is arduous, hard work, and there is no definite date/time of it ending (i.e. one doesn't get given a set time/date for someone's passing). And I say that as a hospital nurse of 20+ years experience in NHS: and FWIW believe me, I bloody love my job, I'm not slagging it off and I'm not hating that I have to look after patients - I am only stating that it is (or can be) very hard and arduous work.

I wish you all peace and a good outcome of these talks xx

No that doesn't happen like that.
The patient isn't able to come home unsupported. The home will need adaptations and also carers. The home is shared and the other person living in the home can say clearly that the home is not suitable for said adaptations e.g. no room big enough for a hospital bed. And that they are not willing to have carers visit the home.
The sick don't trump the others living in the home.
OP your parent and you have to keep stating over and over, home is not suitable, they cannot come home.

its not a case of getting your house back

its the issue if an 80 year old trying to care for a terminal patient, it’s a difficult task for a much younger fit oerson

24 hour care is 4 carers 4 times a day fir 30 minutes

the other 22 hours are down the the 80 year ild

and terminal patients need a lot of care, it’s not an easy task

Have read most of the thread and really feel for you op. Suggest you talk to the hospital and carefully suggest that this seems to be an unsafe discharge and then go through your concerns. Questioning the safety of it usually triggers a pause and a wider discussion…

I had this kind of situation but my dad wasn’t dying, he needed care and my mum didn’t want him home after a hospital stay partly because they hate each other but mainly because she knew the care package would mean she’d still have to provide care. My dads wishes to come home completely trumped her assertion of carer burn out. Social worker told me police would gain access if my mum didn’t let him in voluntarily. It didn’t come to that as she agreed for him to come back. I think the social worker was talking bollocks but that was their stance.

This. Other parent will have their house back to themselves soon. Sadly.

Op hasn't mentioned which parent is dying as far as I can see.

It's not as simple as being able to drop everything and go , people have jobs and children they have to deal with

This is the hospital trying to free up beds as currently your dying parent is bed blocking and only there because a suitable hospice space has not become available. I work in care and if your parent who is at home is not happy to have the ill parent home just say no and refuse the request until you have been given a full written copy of the care plan. Ss and hospital will say anything and they will be empty promises just to clear him out of the hospital. I see this almost daily. Families persuaded and bullied to take people home and promised a care package is being put in place when the reality is the family are left to cope and told there are no local carers available to cover the hours. 24 hour care will not materialise and your poor parent will be expected to cope.
can the non ill parent stay with you as if there is nobody else in the home it is unlikely the ill parent will be sent home? Just say die to the trauma of your fb dying at home if your other parent is discharged there will be nobody else living with them?

Ex-hospice chaplain here. The post I've quoted is exactly what I was thinking. Hospice beds are at such a premium that it will be easier for the hospital to send a dying patient home.

As many others have said, resist letting your ill parent home. Having experienced one parent dying at home and the other in a hospice, I wouldn’t wish the home death on anyone.

It took 4 siblings rotating 2 on, 2 off 24 hours a day plus hospice visits, and district nurses. We didn’t spare his dignity, we never controlled the pain. It was a living nightmare, for all of us and I still can’t bring myself to think about it.

I can only imagine that people advocating for home deaths have never experienced one. Terminal agitation is such an inadequate term for what it is. It is most certainly not confined to a bed, in our experience it was exhausting and dangerous.

In contrast, the hospice death WAS everything you would hope a ‘good’ death could be. Peaceful, pain control, able to spend quality time together.

The carers coming 3/4 times a day leaves your mother doing the caring solo the other 23 hrs

how is your father going to get on a commode, etc
The practical aspect is surely a safeguarding issue of personal care and if he falls you’ll be needing to call ambulances regularly to deal with this