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

This x1000.
As an ex district nurse I would never ever choose to die at home.
I'm sorry to hear about your parents OP.

I have challenged the capacity test done in the past with DFIL. Turns out they did the capacity test wearing a mask and took no account of DFIL being deaf. He's a people pleaser so just said yes to some very leading questions like ""you want to go home don't you Mr Polaroid".

Second assessment was done with a different result after a fair bit of me kicking off and a lovely Nursing Home was found for him instead.

I've just read your update. I'm so sorry to hear that both parents are now I'm hospital. Sending hugs.

I'm sorry - though sadly not surprised.

I suppose it's a minor positive both are in hospital so in a safe place- and it has to help you with saying firmly no to dying at home option.

Hopefully a hospice bed will open up soon - it is by miles the best option just some area have too few spaces.

OP just sending love and solidarity. I have had adjacent experiences and you are in a particular kind of hell.

Every situation is unique and intensely personal but the emotions attached are intense on all sides. Often there is a sense of helplessness and being unable to do right for doing wrong, compounded by medical incompetence and bureaucracy and yes, perceived cost effectiveness over dignity and safety.

I send you unconditional love, strength and solidarity, with absolutely no judgement x you know your and your parents situation better than anyone else. ❤️

@Whyismycatanasshat I'm so very sorry. I am thinking of you all today and in the coming days.

Elderly and end of life care is a huge mess, folks delude themselves about the support available, which I think is a coping mechanism in itself. It's better to face it - as you have been doing.

Good luck OP. It's tough and I hope your siblings are supporting you.

Look after yourself too, or you'll be no good to anyone.

So sorry to read your update OP.
I fear you have more trouble ahead. You may well find your parents have been propping each other up and the one who will be left can't manage independently.
The fact they are frightened by having "strangers" in the house does not bode well for when they need carer support themselves.

I think it's time to sit down as a family with your parents and have a frank discussion about plans for the immediate and longer term future

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.

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.

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 things are so tough OP, take care of yourself.

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

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 am so sorry to read your update OP.

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?

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.

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.

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.

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.

@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.

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.

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

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?