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Elderly parents
Original poster

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

383 replies

Whyismycatanasshat · 05/09/2024 23:42

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.

OP posts:
48Hourss · 06/09/2024 00:03

Whyismycatanasshat · 05/09/2024 23:58

@48Hourss I get that but other parent has aged related vulnerabilities and it’s wrong to ignore those.

@Jenala dying parent will not consider other parents feelings or needs, they have not done this for some time. A complete shift of personality as the cancer has progressed.

@BrightTealExpert Thanks, they have had contact with social care previously so I will check that out.

I feel you are overthinking it.

LessOfMe99 · 06/09/2024 00:03

I think the person who is dying should get their final wish.

Flopsythebunny · 06/09/2024 00:01

You and your other parent need to put your feelings aside. Your dying parent wants to come home to die and the hospital say they have capacity.
If this were my parent, I would move heaven and earth to make sure they got their wish.
To go behind their back and make other arrangements would be awful

Original poster
Whyismycatanasshat · 06/09/2024 00:00

@T1Dmama I basically said that today and was told “dying parent would be having care at home” repeatedly, rather than anything helpful.

OP posts:
Original poster
Whyismycatanasshat · 05/09/2024 23:58

@48Hourss I get that but other parent has aged related vulnerabilities and it’s wrong to ignore those.

@Jenala dying parent will not consider other parents feelings or needs, they have not done this for some time. A complete shift of personality as the cancer has progressed.

@BrightTealExpert Thanks, they have had contact with social care previously so I will check that out.

OP posts:
T1Dmama · 05/09/2024 23:58

You need to call the hospital and simply say that your other parent does not want carers in the house, does not have room for said hospital bed as it will mean they can’t relax either and wants dying parent to go into a hospice…. It is your remaining parents home too and if they don’t feel able to cope then they absolutely have the right to reuse to have dying parent home! It isn’t very nice for your parent to know their spouse did in their living room!!…. Just call and tell them NO!!

Jenala · 05/09/2024 23:53

Capacity is time and decision specific, it's not really a general thing. Your parent could have the capacity to make some decisions, and not others. They may also have fluctuating capacity at different times. It's complex law in some ways, and not just a case of 'they do/don't have capacity to make decisions'. It's not true that only a qualified social worker can make that call though often that's who will undertake a formal capacity assessment.

I do think it's worth asking for further support to figure this out, either from health professionals or social care. Your parent can't be forced to go to a hospice if they have capacity to decide they want to be at home, and if they don't have the capacity to make that decision it'll come down to what's in their best interest. Equally though that doesn't mean your other parents feelings can be ignored. Has anyone discussed with your ill parent how your other parent feels? Might it be possible to change your ill parents mind if they knew?

48Hourss · 05/09/2024 23:52

I honestly think this is about the dying parent, not everyone else. If they've changed their mind they've changed their mind. They may feel scared where they are, and if it's their last wish to be at home why shouldn't that happen?