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.

Oh the irony. You think you know best too.

We don't always get choice in life and that's for very good reasons. It's not just about convenience it's about safety, dignity and the mental health of the other parent.

It also sounds very much to me that the dying person doesn't have mental capacity if he thinks his dead son is still alive. My father died at home but complained on a daily basis that he hated it there and wanted to be in the Carribean. Should we have taken him there because it was his dying wish?

If you are an only child with no other family and you have looked after your parents for ten years full time into their 90s with dementia and cancer and all the rest and you are burnt out and finished and both parents are difficult domineering people, definitely opt for a hospice if you can BECAUSE it is as much your right to be allowed to spend time with them and sit with them in their last days as their son or daughter rather than having to do all the personal caring duties with no sleep having health problems yourself. No one size fits all.

It’s entirely possible that hospital staff have suggested this as a way of clearing the bed. That is a priority for them and that’s understandable. Home is an option and it’s easy for a patient to feel they need to agree especially if they are in pain and suffering from confusion.

Surely whether they go home or to a hospice does make a difference to the hospital, though?

if there are no places available at a hospice then the patient cannot be discharged and stays at the hospital (“bed-blocking” I think is the awful phrase)

DF had been well looked after by local GP, DM and ( a bit) by me. His condition declined spectacularly one night, the next morning the GP came and arranged for him to go to the local cottage hospital straight away ( those were the days…).

As the ambulance crew were taking him out of the house, he held my hand and said he didn’t want to go; but I knew he had to, his situation could not be helped at home. The care he recieved in the hospital while his physical and mental state fell off a cliff was exemplary. We could visit without restriction, they kept in touch with me by phone during the three days it took him to die.

I still feel guilty that I had to deny his request, even though it was twenty years ago, but I made the right choice, for him and for my mother. Sometimes ‘guilt ‘ is just the price you pay for making the right decision in difficult circumstances.

Those saying that dying parents wishes override - what if there is no-one at home?

OP is it an option to say that the other parent is not living at the house? Could they come and live with you? I appreciate you are 2 hours away but this may mean they'll agree to hospice.

Well of course it's possible that the parent has changed their mind about where they want to be.

Sadly, if it's not possible to be at home then it isn't!

How many homes can take a hospital bed plus whatever equipment is necessary?

I'm guessing that this is only a possibility because Op's other parent is still in the home?

The patient also thinks s/he has been having telephone conversations while in hospital with his/her other children and a dead son.

When no phone calls of any kind have been happening.

Still think s/ he has capacity?
surely there’s doubt?

When my gran was dying of cancer it was a 6-9 week wait for a hospice bed and she had 2-3 weeks. It was a choice of hospital or home - neither was ideal, neither was what any of us had had in mind. It’s possible someone has said something along these lines to your father and that is why he is adamant about going home. How do you feel about him being at home if that is what the choice boils down to? How long is the wait fora hospice bed in your area? Does he have that long? Would he be blocking a hospital bed for that long when he could be at home? He probably doesn’t want to risk dying alone in hospital and that is why he is now adamant about being at home as this compromise is the safer, less lonely version.

This.
Surely this could be the solution?

The remaining elderly parent goes to stay with OP or another relative.

The home is available, but no one is (temporarily) living there.

Not a terminal case, but the hospital was determined to get my late fil home and lied to me on the phone about his capabilities.
The fact your parent has lied about contact especially saying they have spoke to their dead son! says to me they are confused, probably due to the meds and the cancer, and saying what they think the nursing staff want to hear. My late fil was very much a people pleaser to strangers, always wanted to give a good impression of him.
I hope you get some answers today @Whyismycatanasshat , I really feel for you, your siblings, and your parent who is at home💐

No-one at the hospital is listening

And that's why their comment that "carers will be there 24hrs a day" is a complete nonsense
Too many hospitals will say anything to get people moved on, and while you may well get carers 2 or 3 times a day they're more likely to say you "must have misunderstood" and that anyone responsible for changing the decision is inameetin, on leave, not in post at all, etc.

The wishes of the dying parent are important, but so are the needs and health of the other one, and if they don't want strangers in the house anyway this simply isn't going to work - especially as you said there's previous for their needs being ignored
Therefore it seems to me that, regrettable as it might be, the hospice may need to be presented as the only realistic option

This is so relevant.
thank you for sharing your story.

I don’t know of anyone who has had 24 hours pd terminal care at home on discharge from hospital. When my DM was admitted to a hospice in London via an on call GP, he said it was the first admission he had managed to arrange in two years. We had cared for her at home and then four days before the emergency that got her admitted, I stated we needed care. As my DM was being stretchered into the ambulance to the hospice, the manager of the care agency called to say leave her at home we will send carers - I told her she was too late. The hospice was fabulous, all the staff were professional, experienced and really caring.I always donate to them so other families can benefit.

That’s a great death.
Unfortunately it’s not like that for everyone. Particularly post Harold Shipman now pain relief is guarded and used sparingly…My parents died in the 90’s/00’s at home with excellent pain relief. A relative died last year - liquid paracetamol, essentially Calpol was all that was offered until they were climbing the walls in distress and pain in the last day and a half. It was horrific.
there’s a good chance, in fact almost certain that the carers wont turn up, that pain relief will be patchy, that it will be horrible and distressing for all involved.
It’s not fair to impose a caring role on a very elderly person who’s not up to the job. OP doesn’t say what life expectancy is, but people can hang on for a surprisingly long time.
I would continue to push for the hospice, the pain relief will be much more consistent.
I wonder what would happen if dying parent lived alone? They surely wouldn't send someone home to an empty house with carers?

I hope you get to sort it today op, it will be so much easier dealing with all this in person and being able to see your parent to assess for yourself if this change of heart is legitimate.

anyone criticising the op for ‘overriding’ her parents wishes obviously haven’t watched a love one die, I’ve watched both my parents die, I’m glad they were both in hospital and on the receiving end of the best care possible.

convinced home is best because they are not happy on the busy ward waiting for a hospice bed.

How likely is the hospice option? We got places 20-30 year ago for my DGP more recent family deaths was it was not an option as there were no places.

If they've been told no chance home would be better than the ward from their view point.

Council adult social care - hospital team/SS - I would get in touch with as soon as possible - how helpful will widely vary you may get a good one. You may also want to look very quickly at care homes - as another option.

Equipment can be late and carers are variable in quality and timings and having someone die at home is bloody hard - but wards are hugely variable and we had relative in some dire ones in fact Dad cousin just discharged himself and is struggling at home with carers as the hospital was so awful.

Also comment that they are not considered spouse's needs now - well saw that in my grandparents - pain and exhaustion meant they couldn't deal with other person as they and in past and frankly whole family got resentful spouse couldn't acknowledge anyone else's burden's and would make things worse. After death it rapidly became clear remaining spouse had dementia and had been much worse in last few years - boiled frog situation - and had been relentlessly exhausting.

Unfortunately my parents did not live in a spacious, Hollywood style house.
The last sight the family had of my dead dad was him upright, being shuffled round corners, down steps and out the tiny front door.
I also fully understand that my dad wasn't particularly fond of me and his illness made him lose his manners. It was harder hearing his indifference in our family home than it was in a medical setting.
My mum was also stuck with the memory of him seeing imaginary creatures bouncing around the picture rails in her bedroom. After his death she slept on the sofa till she could have the room redecorated.

We're about to go through all this with my FIL and it's already bringing back a heap of buried pain.

Actually, @SmileyHappyPeopleInTheSun has an excellent suggestion of a care home/nursing home as an alternative to the hospice - the one my relative was in often had people come in for their last few weeks of life.
Would be worth investigation, particularly if you can self fund.

The wishes of the person dying are the ones that count.

There isn't a sound argument the other way.

Generations back, most people died at home.
And there was far less pain relief.
Families just got on with it.

Have we simply become less resilient and wanting an easy way out for ourselves?

I don't know how you can possibly say it would take years to recover from.

As I said, my parents nursed my Gran for 6 weeks when she was dying from cancer. None of my aunts or uncles would have her.
Her wish was to come home, not be in hospital.

My Dad had a full time job, I was doing exams at school, my parents had a tiny house and gave up their bed for her and moved into the lounge for weeks.

So many people saying it's all about the dying persons wishes and I really disagree. The parent who will be left behind to grieve the loss of their spouse may not be able to cope with having that happen at home with minimal care. It takes away the last moments ad instead of being there loving your partner with hospice care support you are doing the caring, feeling the fear etc.

I would be utterly traumatised if this happened to me/DH and ultimately if I'm being left behind I need to prioritise my wellbeing

Such a sad situation- so sorry you are having to go through this OP. It does sound as though there are good reasons to doubt that the parent in hospital has capacity, you will be better placed to consider that when you visit today. But even if that parent does have capacity and has genuinely changed their mind about where they wish to end their days, the posts saying that the dying person’s wishes trump all are missing the point. If the parent at home is not capable of caring for the dying person because they are themselves elderly and vulnerable, and wider family do not live near enough to provide practical assistance, the parent in hospital cannot safely be discharged there.

Looking after someone with intensive care needs at the end of their life is exhausting and potentially traumatising, even for a healthy and capable adult with a wider family support network, which isn’t available here. As others have pointed out already, the maximum level of support likely to be provided in this situation is carers attending 4 times in a 24 hour period. Which leaves the 80 plus year old parent providing care round the clock. You need to fight the hospital on this OP. Good luck to you.

Another story similar to this. Promised ‘care’ for DF with terminal cancer. That care equated to one nurse twice a day to manage drains but it was on the family to change the linen several times a day due to double incontinence, wash him, cook all the meals, turn him every few hours to prevent bed sores, give him pain meds every two hours etc because none of that was ‘medical care’ so not done by nurses. Yet we all worked FT/had families etc. It was exhausting.

It was a miracle when the local hospice had a bed for him but only happened after complaints about lack of community support. That hospice was the perfect place. All the care was done by the professionals and the family was able to just be with him for his last few days of life.

However, we found out the policy of this beautiful hospice was not for end of life care. Policy had changed to become respite for the terminally ill being cared for at home to come in for a few weeks be managed for pain relief etc. and sent back home. Literally told that if patients were admitted to die it was preferable that they only had two weeks to live or less. It really is a shame that dying is not supported or managed better in this country.

Generations back, most people died at home.
And there was far less pain relief.
Families just got on with it.

This is true @Girlslikepearls, but years ago you got old, ill, then died promptly. These days the likely hood is that someone, daughter or wife usually has been running themselves ragged for many years caring for the ailing person who’s been kept going past their sell by date by modern drugs and medical intervention that just wasnt possible generations ago.
Plus families lived close to one another, mostly women didn’t work outside the home, you can’t really compare today to generations back - the world is a very different place.

Generations back, most people died at home
And there was far less pain relief
Families just got on with it

Yes, @Girlslikepearls, but generations back people tended to have more children and much larger extended families to share the load, whereas now the issue OP has of all the children living hours away is much more common

And sorry, but we don't get to flick the needs of others aside with "There isn't a sound argument the other way" - not when some of us have seen the price of prioritising the wishes of the patient above everything and everybody else

Edited to add sorry, @user7853156780, I see I cross posted with you* *
You're also correct - and I should have added this point - that the prolonging of life beyond all that's reasonable or even kind wasn't common years ago, and it's just one more issue which adds to the burden of everyone now, patient included