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

Working in social care, just as I they were well if the person has capacity they have a right to be at home. There is nothing that the other person can do about it other than refuse to provide any care or support, although I do completely hear you. On a personal level I wouldn't like it either as the realities having someone at home while they are dying are exhausting and difficult. I've cared for a grandparent and I had nowhere to go at the end of each day to decompress. But the dying person has to take priority it'd be awful to think that someone was trying to take away your choices for your last ays alive.

Hello this is a very difficult situation and I disagree with pp about your parents ultimate wish. Taking someone home on end of life care requires everyone to be in agreement because even with carers in place that's 4 x a day care at best for 15 minutes at a time. Even with District nurse input they could be 40 minutes away with another patient when you call, nothing is immediate at home. My friend is an amazing nurse who I would 100% trust to look after my family and she really regretted having her mum home.

Is there a palliative care specialist nurse involved? If not why not? You don't seem to be getting a great response from the ward and I understand the pressures of acute care and the staff change every 12 hours but someone in palliative care should take ownership.

What is the hospice wait list like? Realistically there is a window to move someone and it may be approaching the end of that so they are exploring other options.

What stage are they at and what needs to they have? Are they conscious? Are they toileting independently? Can they mobilise? This along with confusion could be a big risk because your parent will not wait 3 hours until the next slot with the carer and may g3t up and have a fall. Are they requiring analgesia regularly?

We have just been through similar and I was horrified to learn that if the hospital deemed my father to have capacity and he wanted to come home then that was his choice. My mothers needs didn’t come into it, despite the fact she’d be the one picking up the pieces in between care visits.

Fortunately my father agreed to go into a home. But our short term back up plan was to move my mother in with me. Then I thought the care package would break down very quickly. And I was going to ask for a risk assessment of him going home to an empty house.

Our hospital has a carers lounge where they provide really good support to the carers of patients and talked all this through with us. I suggest you see if they have something like that you can talk to. And it would be good to chat to the social worker and explain your doubts as to whether your parent fully understands their decision as previously they asked to go to a hospice. Also try and talk to your parent and see where their thoughts are today.

This is a very difficult time for your family and you have my sympathies.

Don't open the door when the bed is delivered.

I'm afraid that I sympathise with the parent at home who doesn't want their house turned into a hospice. The fact that the dying parent did not discuss this with them and is imposing coming home on them speaks volumes.

They can't discharge home if other parent refuses to allow it- no one can force the delivery of the hospital bed etc. Politely and very definitely tell the hospital discharge home is not possible.
I would also query the 'phone calls' - are they on painkillers? that could be a culprit. May not affect capacity on this decision though bur tbh that's irrelevant if home is made impossible by family refusing.

I believe this will go to a best interests meeting whereby one of the things considered is previously held wishes and beliefs. This would be where the previous wishes of not being cared for at home after caring for your DB would be looked at.

There is a tendency to assess capacity fairly simplistically, especially if the outcome of the decision benefits the assessor in some way. So I would push back on this with the hospital social worker. Highlighting change of personality etc so not considering their spouse. From what you say, I think it is unlikely that they would be able to discuss the impact on others were they to return home. Thus they would not be weighing up all the relevant evidence and would thus lack capacity.

You've had some great practical advice on here OP, which I can't add to, but I'm another person in support of what you're doing, having been in very similar situations myself with both DPs. And like TerfTalking I wonder whether the people who are advocating for putting the dying person wishes over everybody else's have ever been in such a situation. You can't end up with everybody else broken. Look after yourself and hope you manage to get it sorted out for everybody

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.

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.

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.

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.

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.

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

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!

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.

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.

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

@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.

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

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

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.

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.

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.

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