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

I've said before on his thread, see how robust the discharge team think their planning is if the 80+ wife isn't at home. It won't be and they will change their minds.

I don't think some people have any idea what providing this sort of care is actually like, or the reality of this vaunted 24/7 assistance materialising. For those who say it did, I'm glad, but it is the exception not the rule in my experience, and I spent 30 years in social services before leaving to care for my DH.

You mean the hospital should discharge a dying patient into an empty house?

Seen that happen a fair few times with patients who really do have capacity, or those who are deemed to have capacity because the hospital doesn't !

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You mean the hospital should discharge a dying patient into an empty house?

Thank you @AppropriateAdult for your post. OP I'm afraid that if you're not set up for this (family and professional help in combination) it will not work. I hope the end, wherever and whenever that is, is peaceful. My best wishes to your remaining parent.

I got the impression it was her mother dying and not father.

I'm sorry you're going through this, hope you managed to resolve some issues today x

Yes thanks @manysausages. One of the benefits of where I work. Although tonight will be a Nytol night I think.

I’m so sorry. I hope you’re getting the support you need

Also @Girlslikepearls I know of a situation where the entire top floor of a Georgian mansion was converted into a hospital ward for years, staffed by 2x registered nurses each 8 hour shift, when the matriarch was ill. Perhaps poor OP should consider this option? Might work if she wins Euromilllions.

What if people don't though? Anyway, this is meant to be coming from CHC. It's the logistics.

We are very likely to be talking about a double assist care package at least when moving is needed, certainly 24/7 mentioned. I share the educated doubts of people on this thread who are dubious that this is going to work in any way seamlessly and an 80+ woman in poor MH, who has already nursed a son until his death, will not be left in a situation she says she can't cope with, because the husband who adamantly said until yesterday that he wouldn't want to die at home has changed his mind, while exhibiting variable capacity.

For the very rich, that's an option. It would cost £1000s per week. It isn't feasible for the majority of people.

It's available privately with private nurses if a family has income to pay.

I know of a few families who have employed private HCP for this.

I hope there was some progress today, OP, and a more sensible plan put in place.

In my 18 years practicing medicine I have never experienced a successful home discharge of a terminally ill patient where
the family were actively resisting it. It just wouldn't, and couldn't, happen. Caring for a dying person at home requires huge input from multiple capable family members - even if your mum was willing to do it, it would be a big ask for a frail 80yo. If she's not willing or able, then it's an absolute no-go.

This is a really good point from @EmotionalBlackmail

"My relative talked frequently about going "home" and did die at home. But I'm very sure he meant back to how life used to be when he was young."

Lots of people (relatives of friends, my own relatives, and I've seen this in care homes too) will repeatedly state that they 'want to go home'...

And then they get home they are unhappy or in fact KEEP saying they want to go home..

Because they want to go 'home' to... 20, 30, 40 years ago, when they were fit and healthy and young and so on. Not now!

@Whyismycatanasshat I have been thinking of you all day. I hope the hospital realised that it is unsafe for both of your parents if they discharge him to the home. I cannot imagine how they think that you mum is able to do the manual handling it will take.

For the people saying it should be about the dying person's last wishes and respecting those ... Unsupported EOL care by the family can cause significant and long lasting trauma for the relatives who do that care. My dad changed his mind again when the pain got worse ...in his lucid moments he begged me to hold the pillow over his head. I still have nightmares of him coming out of his grave 2 years later asking me why I let him suffer. I cannot get past that to grieve.

My family were promised carers and 24 hr support. The district nurse called in every couple of days and the 24 hr support was press option 6 when you call 111. On the day he died we hadn't had carers in for 2 days because we could tag team as a family and they were at capacity.

In this situation he will be discharged into the care of an 80 year old woman. If he needs the toilet he will have to lie in it until a carer can come in to help her. It is not safe for her or him.... Despite his wishes that is not going to change.

I have never heard of someone having 24/7 EOL care at home. In a hospice yes.

The reality is up to 4 15 minute visits from carers during the day and a sitter on occasional nights doing 10pm to about 6am.

If OP comes back after her parent has sadly died, and says that they had 24 hour home care throughout, I'll donate £50 to Marie Curie nursing.

Yours is the only example of this that I've ever heard.

But all of the posters on here know that 99% of the time this simply isn't true. The care sector is under staffed, under unfunded and yet the need is massive.

Think about the logistics of finding 24 hour care, where exactly are all these nurses, they aren't just waiting in a warehouse ready to be assigned to a patient.

I'm glad you had a positive experience, I do wonder when you had this experience, or if it was funded in the UK

There do seem to be some posters on here with ideas about EOL at home that have no bearing in reality for many.

I've done it for a parent with a full care package in place - 4 x 2 carers a day and a 'sitter' (no qualifications) overnight most nights. It was very very hard, exhausting, stressful and there is no way on earth I'd agree to do this again. I've also accompanied someone terminally ill who died in a hospice and it was so much better - pain relief, personal care, family able to spend time with their loved one.

The reality of at home is waiting for pain relief that may or may not arrive in time. Never being able to leave the house because the carers are barely there, or are late and you can't leave the dying person alone. This causes problems with basic things like shopping for meals! Two carers at a time coming from other clients meant they seldom arrived together, so sometimes one would need to leave before the other. Or I'd have to be the second and operate the hoist, commode etc. Keeping on top of the laundry - double incontinence can create a lot of mess!

If the overnight carer fails to turn up or isn't available every night then someone has to stay up all night. Even if you stayed up the previous night too. It's worse than having a newborn. It only works if there are multiple relatives to tag team this.

My relative talked frequently about going "home" and did die at home. But I'm very sure he meant back to how life used to be when he was young.

It's very easy to think you'd definitely have someone home to die. And if you're not 80 you can probably throw everything at it but it isn't always as quick as a day or two. How many small children and/or jobs can be abandoned for days or weeks at a time?!

Yes, I am. I would never do anything like that.

If the other parent does not want to do it they should not be forced to.

Very very selfish.

Yes, very selfish.

Are you for real??

Selfish?!

I read this quickly and thought you were being ironic and playing Devil's Advocate.........but you were serious weren't you?
Bloody hell..........

Well, if I was the other parent, I would move out.

Very selfish of the dying parent to do this.

@48Hourss I don't doubt your experience, I just know it isn't something routinely offered around here, whereabouts in the UK are you ?