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.

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.

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

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

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

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.

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

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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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.

But has ANYONE had the conversation with the patient that their family don't want them home as they feel that it's upsetting for the spouse having their life disrupted?

This OP is not about the spouse just "having their life disrupted". It's about an 80 year old spouse with a mental health problem so serious that they have social services intervention, and are scared of strangers in their house, managing their dying husband/wife's care alone (for most if the day and all of the night).

Stop minimising and trivialising the problem.

There were three of us living in my house, and nursing my dying husband, in a fairly straightforward and peaceful situation, and I still (in my 50s) got hardly any sleep. I can't begin to imagine what's it would be like for any 80 year old, alone but for carers popping in four times a day, even without the added mental health issues.

I hope that someone will see sense and see OP 's parent into a care home that offers EOL

Everything is on hold until Monday.
Other parent is now also in hospital.

Today has revealed so much more than us “children” have been aware of; there’s a lot to untangle for both parents.

What a mess.

Oh gosh. It's so hard when you live away. We had something along those lines with my MIL's dementia. We thought she was just about coping at home, with my SIL giving up her job so that she could go up and stay for three days a week. But it turned out that the days she wasn't there, were very different.

Good luck.

@Whyismycatanasshat I am so sorry, it is very difficult sometimes dealing with elderly parents, especially when you don't live around the corner. Don't forget to look after yourself.

What a mess - what a familiar phrase in our family as we started to try and understand our very elderly parents coping strategies.
Best wishes to you.

Oh it’s so difficult- I don’t think it’s uncommon for our elderly parents to not ‘bother us’ with stuff that we later have to unravel! Don’t know if it’s that generation or a parent thing, but it’s definitely a very difficult thing for us kids!
Do take care of yourself too. Good luck and there’s plenty of support and advice on these forums, particularly Elderly Parents - also a place to vent.

I want to find a silver lining in the developments to give comfort but I don't think there is.

The elderly parent boards are a wealth of support... A mix of practical lived experience advice and hand holding.

Take care and time out for you... EOL is not an easy ride.

Gosh - that is all a bit of a generalisation. As someone who spent years as a medical social worker in hospitals and clinics I have NEVER heard nurses trying to suggest to a vulnerable patient that they should prefer to go home; nor have I known a social worker compromise their professionalism ands duty to the patient by putting the needs of the hospital system first. Part of the job of a professional is to be objective and not swayed by external pressures. Of course we knew the system was creaking around us and under pressure but that was NEVER the prime consideration.

It is easy to try and find individuals to blame when a whole system needs review.

Sorry to hear this.

It should now mean everyone accepts coming home to die is a non-starter.

If they want to be together, perhaps transfer to a nursing home with palliative care expertise might be a good option for both of them?

I am so sorry to read your update OP.

Its dreadfully hard.

My father lives with us now. Mum was definitely "propping him up" . It's not just where one parent dies - how will the other cope soon after. If she is likely to pass soon that's a problem just around the corner.

I don’t know where you stay OP but I work in rural community nursing and some of the places people live that want to come home to die honestly just don’t realise how much has to be put in place or that there won’t be nurses on call to come right away and how it works or affects other members of the family.

for example where I am if they needed breakthrough pain relief it would take us 30+ mins to get to them as we couldn’t just drop what we’re doing to go, Marie curie nurses for overnight stays are few and far between, care packages are next to non existent. Everything is explained clearly from both sides of the coin the choice is ultimately left up to the individual and everything would be put in place to facilitate a good death as far as we could but it does rely on family being on board to help but many choose the hospice

i hope you get sorted OP it’s a very stressful time

Sorry things are so tough OP, take care of yourself.

I view it a little differently, yes it’s important that the parent dying is listened to - but the other parent has their own emotional needs and they will be living with the consequences. The time before death will be harder if she hasn’t got her own space for respite and grief, the fear of strangers likely means she won’t sleep well, and she (I’m assuming) will continue to live in that house and may not want to be in the room where her husband passed away. I know the disappointment for someone dying is hard, but the person living has to be respected or you might find they have mental health issues / dependency need etc in the future - and without family nearby to help.

if someone could explain that to the father maybe he would understand? And if not the father than try again with hospital staff? Maybe even visit the hospice that would be an option and ask for their support?

Sorry - I didn’t see your last update. Best wishes that you all find a way through that is as comfortable as possible for you all.

Awful as it is that your other parent is now in hospital it might be a "blessing in disguise"?

Hope you get some resolutions on Monday.