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.

It doesn't mean they do either. At best it's fluctuating. And no one has witnessed this change of heart. Unfortunately I've been given the convenient but false answers by medical staff in this situation. I think it is imperative now that OP or one of the other kids goes to the hospital to see what's going on.

@BreadInCaptivity Thank you.
I have a contact for a person on social care who has been involved with the other parent; I am going to contact them on my way to see both parents tomorrow and see if they can offer any support.

@PullTheBricksDown Thank you. I’ll be there tomorrow. If I could have arranged care for my own DCs I’d have gone today.

That's good.

Remember you can leverage SS for BOTH your parents and get support from them to ensure a decision is made that respects both their best interests.

There can be a tendency to assume the SS route is always through the dying parent but in your case I think flagging concerns for both is very important.

On that note you may need to be pedantic when calling SS to raise two separate issues. Your dying parent's capacity and the vulnerability of the other parent. These actually need to be addressed as separate concerns.

@Whyismycatanasshat I’m sorry for the situation you’re all in.

I would suggest getting the thread moved to the elderly parents board, where posters have a great deal of experience in end of life care situations. You will get a more considered perspective than AIBU which can end up a bit of a bun fight.

@Whyismycatanasshat : Make sure you make hospital staff aware of how far away family support is - otherwise, they may well think you're just up the road.

@BreadInCaptivity thanks again, I’d not thought of it as two separate issues really, but you’re right, it is.

@funnelfan I’ve reported the post and requested a move.

@Wingedharpy The ward are aware but I will make sure they understand that we can not support the way we could if we all lived closely.

What a mess.

I imagine if the patient was being denied access to his own home a safeguarding concern would be raised amd am emergency court order would be obtained.

I hope it all goes well for you. Your situation is well nigh unbearable. We were lucky that Dad had capacity right up to the end. We could speak to him and he could press our hand and make himself understood.
You are so right about uncertainty and the confusion it brings. The family will just have to support one another. Stay strong. X

Would the other parent come to stay with you for a bit of a break until further assessment can happen? That might give a breathing space and they might be less likely to discharge if they know there is no family at all at home to fall back on.

While being able to be at home suits one parent, it is a tricky balance to ensure they are both safe.

They may not give two figs, but if other parent says No, i am not having dying parent or anyone in my home, there is absolutely nothing the hospital can do.
The situation may escalate and go through due process but unless court ordered, other parent can not be forced to take dying parent home.

Not RTFT, but...

I was in exactly this situation 6 months ago. My wife was in hospital, terminally ill with cancer. The hospital wanted her to go to a hospice, but my wife wanted to die at home.

We (the children (all adults) and myself agreed that the patient's wishes were paramount.

Fortunately, we had the space (and the money) to convert a room to a 'hospital room'. One child, who lives 3000 miles away, came to stay for the duration, and I couldn't have managed without her. We had carers three times a day, and nurses overnight towards the end.

The experience of caring for my wife was just terrible. When my time comes, I'm not going to burden the children with caring. I'm going to the hospice.

OP it's horrific enough without added uncertainty so huge to you. All I can say is you and your other parent need to think honestly about how well you know your dying parent and make a decision on what will be best for them and allow you all to feel like you've done the best for them so there's no bad feeling afterwards.

I will say that my dad passed in 2021 and was hospitalised for a few months and he definitely wanted home to pass ... myself and his wife fought and eventually got him home towards the end and he passed away 3 days afterwards. He was non responsive for 1 of those. He knew he was home and he was happy.. relaxed and at peace to pass I believe. I still think it was the right decision and would do it again for a loved one.

That being said those 3 days were undoubtedly the most taxing, aging and stressful of my life. No one slept as we stayed round the clock with the hospital bed in the living room, we laughed we joked we tried to appear positive but it was soul destroying and I do not know how some families have people ill at that level for weeks or months as it must have a lasting impact.

Do I think my dad would have wanted us to go through what we did? Honestly I'm unsure... we'd do it again in a heartbeat but I wouldn't want my son to have to do that for me.... it's a mess and there is no right or wrong answer OP I hope you find the right choice and things go as well as they can xx

Interestingly (poor choice of words at 3.30am)
My mum sadly passed away the December of 2021 also a very quick and suddenly illness. There was zero mention of her going back to her home.. . From either of us.it was almost an unspoken agreement that I couldn't cope with that again and she wouldn't put it on me.she spent 7 days in the macmillan unit and it was definitely the right choice with no doubt for both.

I would if before experiencing both been very 'it's the right thing to do and you need to not think about anyone but the dying parent' however that's completely incorrect. I hope you all find the option you need xx

@Whyismycatanasshat your parent at home can absolutely refuse to have their loved one at home. You need to be very clear with the hospital that there will no ability for hospital beds etc to be put in your home and that you cannot have the dying parent at home whether this is their wishes or not. We were looking into hospice for my parent against their wishes because it was too much for surviving parent and they were not aware of their surroundings at all, could have been anywhere, but they died before we could get them there but we absolutely would have.

My dying parent wanted to come home but it didn't happen. She didn't even make it to a hospice but died in hospital. I think that was a mercy. We could not have begun to care for her at home the way the nurses did in the hospital, and really at the end of the day, if you are dying, does it really matter where it happens? If it were me, I'd want to be where I could get the best care, and I wouldn't want to be a burden on my family.

My mother wanted to change her will shortly before she died. She didn't get the chance to. In the full of her health, she would never have done what she planned when she was dying.

Stick to your guns. You are the ones who are going to have to live with this xx

I doubt it, you can’t leave a dying person on their own (from experience). Although they say there’s 24 hr care, overnight nurse etc there often isn’t. At least we didn’t get it. We wanted dad home but I don’t know if we made the right choice for him. The equipment we needed showed up after he passed for a start.

It’s quite scary at times or can be to be responsible for a dying person, there are things you have to do. I don’t know if the OP’s person can move, but my dad could would become disorientated, I had to catch him once when he fell, there’s help with personal care, etc, you have to moisten the mouth, watch them (at least this was our experience). It was 24 hr care shared between DM and I. One of the macmillan nurses was pregnant and couldn’t lift- luckily I could. You have to change bedsheets etc.

We were all lucky dad was only home two weeks and the suffering ended, but we knew it was happening and it was just us. You then have to inform people - things don’t happen immediately.

Cancer often changes the personality, the process wasn’t what we expected. You don’t know what to do if certain things happen, it was just very scary (for us). A hospice is better as they manage pain, they have staff, not family who need to sleep at some point to survive. It’s draining, I couldn’t do it on my own without a ton of support.

It’s very sad they want to come home and that wish may not happen of course, dreadful. But it might not be the experience they’re hoping for. It’s hard on the other person too. Heartbreaking for all.

Sorry haven't RTFT, I feel for all of you. I assume the dying parent is becoming more scared as the time gets closer and hence the change of mind. I don't blame them for not wanting to die alone at Hospice. As a compromise can they stay with one of the children instead or the children take turns to stay with the parents.

See what the score is when you get there tomorrow (today?)

I'd be highly suspicious that the dying parent has said nothing of the sort, perhaps has mumbled vague agreement with nurses saying general chat like 'oh I'm sure you'd rather be at home than here'... and this has been lept on, rather than them actually, actively changing their wishes.

The at-home parents wishes and needs are absolutely important and will be taken into account - do not let anyone railroad you into believing otherwise!

My brother bullied my mum with the whole dying at home wish for my dad.
It was awful.
I am two hours away and I ended up, losing my job travelling to support them.
My brother's romantic view of death at home quickly fell apart and my mum was faced with the realities of a seriously ill person for weeks.

I'm thought I'm never going to support that again. Within a year my fil has rapidly gone down hill and I just want to scream at them as they talk about adaptations that they have no idea, no idea. It's not just a fancy bed and a vase of flowers

I am so sorry OP, what a difficult time for you. I would be wary of relying on a social worker at the hospital, in my experience they only had one thing in mind when my Dad was in hospital and that was to get him out and free up the bed. Sadly, you really have to stand up for yourself otherwise they will push you into anything.

I can understand your mums concerns. My friend lost her mum recently and yes there was help, but a lot of time was spent with her poor mum struggling in pain and waiting for the nurse to arrive to give injection of pain. In the end my friend was trained to administer, a so called ‘cariad nurse’. An elderly parent couldn’t cope alone, if none of the siblings can move in temporarily then I’d speak to the hospital and push back.

Tell your mum to visit you for the duration of the dying period and let social services know that a dying man will be in his own at home.

The reality is that the in house care provided is insufficient. The cost of 2 carers overlapping to cover 24 hours is huge - actually it’s 3 carers. Also from experience the person dying might become plus 2 so that 6 full time carers.

My dad was only able to die at home as we his kids did shifts of care. One carer cannot ambulate for the commode etc.

As soon as they known that the house will be empty the palliative team will be keen to rethink the whole thing - it’s very very expensive not to.

Exactly, you can see on this thread how many contributors have not actually been through this or similar themselves.

I have. Worst time of my life.

In the end my dad did die at home.
My parent double bed was propped up in the spare room.
The hall had a walker and a commode chair, the living room was full of kit plus people.
My dad died at 2am alone. The nurse was regularly checking him, no complaints but it was n't a daylight, surrounded by loved ones ending.
The palliative care nurses were amazing but I'd think that their skills were put to little use spending most the day driving from house to house.