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

That's actually a really common thing within the last few weeks of life, to see and speak to deceased loved ones.

If their current reality is that DB is alive and talking to them, I suspect it has overridden the memory of him dying at home and therefore it's quite likely they do currently want to come home to die.

You and your family need to decide if current wishes are less important than previously stated wishes, rather than ignore what they are saying now and insisting the hospital is influencing them.

I'm so sorry this is all happening how it is, there really isn't going to be a right solution, just one you can all live with with least regrets.

It certainly sounds like dying parent will be coming home, the choice is going to be if non-dying parent will be there or not. Do they, and the rest of the family intend to be with dying parent as they due or will they only have the comfort of strangers?

OP I’m sorry for the situation you’re in. I regularly support people who die at home which IMO is the best place for most people to die but I understand your families concerns. How close to death is your parent? In many areas getting a bed in a hospice is near impossible so many patients who can’t go home but are close to death on normal wards. In my experience both professionally and personally staff on wards will do all they can they are looking after lots of other patients some who are acutely unwell and may take priority over someone who’s dying.
I would strongly advise you to try and sit down and talk to the consultant looking after your parents and the nurse in charge of the ward and explain your legitimate concerns calmly as you can.
i just want to add that I work all the time with patients who are dying at home. Many families when we first become involved talk about their relative being admitted into the hospice ward which in area is highly unlikely to happen. So accept that the person will be better dying at home rather than on an acute ward. Without fail after the person had died they say how pleased they were that the person did die at home it was better the their relative but also better for them. We go above and beyond for the dying we prioritise them over virtually anyone else we are discrete where necessary but also supportive we care for the dying all the time and I believe my colleagues and I are excellent and supporting everyone at this difficult time. We aim for a peaceful death (which is what we all would want) and we achieve it 99% of the time. It is probably the most satisfying although emotional part of our jobs. We come into families lives at their most difficult time and are guests in your home so we are respectful but we also form relationships with the patients and families and genuinely care for all of you we frequently attend the funerals of those who we’ve looked after it the last thing we are able to do for the patient and the family. What Im trying to say is that death at home is often the best place for the person dying and the family.

I wonder if your dad's change of heart lies with the lack of hospice space. He may be wanting to leave the hospital by any means and at this moment home is the only place he can go.

I came on to say exactly this. Would your dad consider a hospice bed if one was available?

Our local hospice has a dedicated nursing team who work in the local hospital. If you have anything similar I strongly recommend you talk to them. They are geared up to care for the family as well as the patient, they will understand the issues you're facing, and they will have a better idea of what beds might become available and when.

Bear in mind that in patient hospice care at this point doesn't necessarily mean it's near the end, it can also be for short term stays while they work out what treatment, pain relief etc is most beneficial.

My DF wanted to be at home. The hospital tried to force him into a home, he resisted Covid tests, which meant the home would not take him. We had a very good liaison worker, who once she was explicitly told he wanted to be at home, was amazing throughout. She arranged a live in carer, other carers coming in 4 times a day to help to wash him and give extra care. This was all funded by CHC, (continuing healthcare funded by the NHS). Initially it was funded for 6 weeks, but once the review time came around, he was unconscious, so the funding continued. He was also given Hospice care at home, which was the part that let him down. He had a morphine syringe driver fitted, but if he needed anything else, I often had to fight for it.

He had the death at home that he wanted, but I don’t think I will ever get over the way he was let down by the hospice. I spent most of his last 10-14 days, fighting for something and someone to help.

The night he died, I rang the Hospice at home number and was told that they were so short staffed that I needed to call 111, and get a Dr to come to us to agree that he had died, and remove the syringe driver, as the undertakers wouldn’t collect him until that was done. It took 12 hours on the hottest day of the year before anyone came.

I did get a written apology from the Hospice and was promised that they would learn lessons from our experience, but by then the damage was done.

I would ask what the care package consists of, what plans they have for the parent that does not want to, and in fact is unable to facilitate this move.

You are stuck between a rock and a hard place here OP, the only answer may well be that you take the vulnerable parent to your home and allow the other to have hospice care at home. If they are already suggesting that they have this type of care, the life expectation is now short.

I’ll be thinking of you

I'd go and speak to the person who's dying. If they want to come home, let them.

I’m sorry you are going through this. The capacity issue is a red herring here and not the issue. The issue is that your parent at home ,and you as a family, don’t feel that being at home is possible for your dying parent. Your reasoning for this is understandable and accurate. It is likely to cause harm to your parent having to do the caring.

This isn’t an uncommon situation, where someone is choosing care somewhere where it can’t be provided. Deaths from/with cancer can be hard to manage in terms of symptom management and community support may be good but is often patchy. There usually needs to be a network of people at home to support each other. It’s also difficult if the main person at home has their own vulnerabilities.

Your parent at home has the right to say no they can’t provide this care at home and you can work together to find a compromise/solution. Your role here I think is to be firm with the hospital that home isn’t currently possible. Are the palliative care team involved as they should be working through this with you as a family?

I hope you get the support you need.

Have you spoken to the palliative care team at the hospital? They are in a sense ‘independent’ from the hospital ward, and will be able to spend time talking to you all to try and support a solution. If you haven’t had any contact yet, I would try and find their number on the hospital website, or ask the ward to refer you.

Hi OP, I fully understand what you're going through. I think some of the posters saying the dying parent should be granted this wish haven't actually lived through how difficult the reality is. I also suspect it's the hospital pushing for the dying parent to be at home as they likely want to free up the bed they're using.

My DH died a couple of months ago. He would say consistently he wanted to die at home, not in a hospital. He had no real experience of hospices so thought they'd be as bad as a hospital. He too became delusional and would talk to and see his dead parents. Fortunately he started getting some outpatient treatment from the hospice and began to understand how different they were, and what a different experience it would be. At this stage my own mental health was on the floor from being his full time carer. I needed help but I hated even having district nurses come in for 20 minutes. Different person almost every time, trying to control my barking dog, feeling a need to tidy up all the time.

Toward the very end DH became extremely ill with terminal agitation and I was finding it impossible to look after him. We begged the hospice to admit him. It was DH luck that another patient, who was due to be admitted, wasn't, so they took DH straight in. He died 2 days later.

Are you getting outpatient support from the hospice? Our one used to ask regularly about DH wishes on where to die. Hopefully they'll have it on record that your dying parent wanted to be admitted. I'd include them in your discussions and explain the situation. I hope you get this sorted, and so sorry for the loss you have to come.

I am sorry you are dealing with this. Can you ask to speak to the palliative nurses at the hospital when you visit ? I would be asking them the following questions ;

Is there a bed available in the hospice today and would your Father be eligible for it at the moment ? It may be that there isn't a bed or that he doesn't currently fit their criteria for a bed. If your Father goes home and then changes his mind, how long would he have to wait for a hospice bed ?

Do they think your Father's confusion is linked to the disease process or the dying process ? Is there anything that could improve this ? It must be awful having to make such big decisions when confused.

You have been told there will be 24hr care provided, is that correct ? Someone will actually be at the house for 24hrs a day ? How will they manage the manual handling if there is only one carer and your other parent isn't able to help ? I don't know if your parents are in England, but I would also check how long this care will be provided for ? What happens if your Fathers condition plateau's, will the care be removed/changed to lesser provision ?

I would also check with the ward if your Father has been telling them that the family will be able to support him at home. Sometimes the information provided by patients and reality are quite different.

Good luck

have you not read the thread? OP is 2 hours away and on her way to support her mum today.

OP for what it’s worth, I had the same situation when my dad was dying of cancer nearly 20 years ago. You’ve had some good advice about how to engage with the hospital, good luck today advocating for your mum and don’t get railroaded,

This, has your other parent or you/siblings been clear to dying parent that your other parent doesn't want them at home as it's too much for them?
Maybe if they knew how upsetting it would be and that you and your siblings were highly concerned how difficult it would be for other parent?
Or do they think other parent wants them home?

I was in your position but an only so everything fell to me. I did not have the emotional capacity to deal with an at home death especially since other parent was very elderly, difficult, and I was the go between sucked emotionally dry by all sides. It will depend a lot on what physical, emotional, and financial capacity your family has to deal with this. I put my dying parent in a care home in the end because I could just not physically or mentally cope with the whole situation on zero sleep, endless medical and social worker intervention who basically did zilch apart from ask dying parent what they wanted, fill out forms and expect cups of tea. Don't forget your well parent will be losing their spouse and you your parent. How will you feel after the death? How will you all look back on it? If you can all pull together it may be possible but if you have flaky family members do what is best within your capacity.

@Tombero i did the same years back. Told hospital ward that house would be empty. And i reported to PALS that the hospital were discharging an end of life patient to an empty house. I also put it in writing. All the talk of 24 hour care evaporated (they know it’s hot and miss and carers often don’t turn up).

So very sorry to hear this. You must reiterate to the hospital that the remaining parent cannot and will not have the dying parent at home. Hospitals put unfair pressure on family to accept patients so they can clear beds. It’s shameful.

Dying parent may fear that hospice will be a similar experience to hospital. It won’t. Could they be persuaded to be discharged to a hospice while home is “prepared for their arrival”? Once there they may settle more to the idea of staying.

typo

At this stage, it’s helpful to think that your world narrows to a bed. Does it matter where the bed is as long as loved ones are at the bedside? For the last week my Dad was never alone- my mum or I or both were with him 24/7.

I wonder if your dad's change of heart lies with the lack of hospice space. He may be wanting to leave the hospital by any means and at this moment home is the only place he can go. He might know that it is not ideal and will put considerable strain on your DM but cannot see another way out.

I think we all have a mental picture of what our final moments will be like & maybe your dad's weren't in a hospital. Mine is in a really posh hospital/ hospice with the family around. I will draw my last shallow breath and the lights will dim as my family drown in their tears.... All story lines neatly tied up, old grudges resolved and my death Christ like signals a new beginning for them. Life is not like this as you know death can be ugly.

My father didn't have a Hollywood death. It was weeks and weeks of him screaming in pain as he waited for nurses and doctors to arrange pain relief and arrive to administer it. Caring for a dying person is nothing like in the movies... My dad's last conversation with me that made any sense was about how undignified it was for me to be wiping his shit off him as best I could because I couldn't lift him to the shower despite our best combined efforts. He was humiliated.

I wish you luck with your conversations at the hospital today. I think you are right to push for adequate care that takes into account the needs of both your dad and your mum. You are right an 80 yo woman cannot care for a bed ridden man so he will need wrap around care if he is to come home.

I would suggest your relative comes to stay with you so that the dying relative can come home. Then they don't have to worry about being in the same house as carers.

If you possibly can, get them into hospice.
I have just watched my darling Dad die of cancer in hospice and it was impossibly hard, but they were amazing and it would have been so much worse to go through at home without the amazing staff and drugs readily available.

That sounds like a really difficult situation and it must be tough deciding which parent to prioritise. I know you think that your parent has been coerced but is it not possible that when faced with the reality of going into a hospice, they decided they actually want to be at home? It’s often one thing to say you would want XYZ to happen, but when in the actual situation, it’s not uncommon for feelings to change and to act differently to what you thought would happen.

The hospital is not "forcing their way into the house". If the person has expressed a wish to go home, and they have capacity, then if the hospital refuse to facilitate that then they are detaining the person against their will - that causes all sorts of legal issues.

The only situation in which that is different is if the person tries to insist that they are discharged to someone else's home e.g. saying "I'll move in with my daughter, she'll take care of me". If they have no legal right to that home, then no-one can force them into that home. I've often seen situations where children who live in their parent's home try to block discharge - if the parent owns the home /is on the lease for the home, then they can't prevent that.

You've said that you think that your relative is being coerced - what evidence do you have for that apart from the fact that they have changed their mind? There are times when pts think that they want to die in a hospice and change their mind - plus there isn't enough hospice space, and priority will be given to those who have particularly difficult symptoms to control, so if your relative is not one of them then , faced with a long wait for hospice bed and the possibility of dying in hospital, the person might change their mind about home.

One solution here might be for the relative who feels that they cannot manage with the person home to move out and stay with family while all this is going on.

Also ask for a best interests meeting and make sure you are present too. Good luck.

What a mess, I am so sorry you are going through this. As well as your social worker contact please also contact PALS at the hospital about the ward staff not listening to your very valid concerns about capacity, your father's vulnerability and your mother's wishes and the issue with thinking she's spoken to your DB etc plus the very practical lack of local support should something go wrong.

The ward staff probably mean well and want to do what's in the patients interest but sadly they are also under incredible pressure to free up beds and as someone up thread has said going home is usually quicker than securing a hospice bed which can sometimes - not always - impact the ward staffs decision making.

In this situation I wouldn't accept her at home. To the person who said it's a safeguarding issue to refuse access to their own home, no it isn't. It would be a safeguarding issue to allow it due to the other resident in the property as this would likely make them unsafe, and potentially a risk to the carers coming in.

I am so sorry this is happening, it's awful and navigating the system shouldn't be this difficult. I hope you get some resolution today.

It might be that there isn't any room at the hospice so the alternative to being sent back home would be to go into a care home.

It's completely understandable how having a spouse come home to die in the same house as your child did could seriously impact on your other parents mental health. This needs to be highlighted at the best interests meeting which you should be invited to.