Children as part of care package

[Porkpieandmustard]

My mum is nearing the end of her life. Currently in hospital but insisting she wants to go home.
Today the hospital have said (after 2 long talks with her) that she can be discharged- possibly on a ‘fast track’ so that she could be at home in a few days, depending on availability of hospital bed and carers.

She lives alone. She will have 4 carers visits per day. We were told by palliative care nurse that she should have someone with her 24 hours per day.

She asked what sort of care my brother and I can provide. We both live 2 hours away. I have a full time job and a DH with (non-terminal) cancer. DB is semi-retired.

There is a possibility of paying for some private carers but nowhere near enough to cover virtually 24/7.

I’ve had a problematic relationship with my mum and have never wanted to be her carer.

I am surprised that there’s an assumption that we can / will provide this care.

The nurse emphasised that it would be a lot to take on. I didn’t say yes or no and said I would talk to DB (who went off the deep end which is usual but will move to be nearer her if necessary. I don’t feel I can let him do it all though).

Is it usual to put this expectation on children? Or was she testing the water and giving us the chance to opt out?

But then what? Presumably my mum would not be discharged?

Sorry this is probably a bit garbled. I’m exhausted and eating cold chips in a motorway service station.

• [Note from MNHQ: Please see the OP's sad update on 31/1 before responding]

You’ve had some good advice here but yes, Social Services will always lean heavily on family support if it’s available. It’s taken me 4 years of nearly running myself into the ground overseeing care for my dad, to realise this. He recently had another major health crisis and I felt totally broken. I ended up speaking to a lovely care professional who told me there is significantly more help available - it was just never offered because I seemed happy enough to do everything.

You’re in a very difficult situation but you’ve done the right thing in determine what you can reasonably do. If your brother does the same and it’s made clear, then the State or private carers will have to fill in the gaps. If it’s really going to be just a number of weeks, you can use that time to make sure she’s comfortable and hopefully at peace. As it’s a complicated relationship, you can do that just by organising admin and contributing however you feel comfortable.

Request discharge to a hospice OP. Will be a much nicer death for you all.

You just need to be clear as to what you can and can't do. If you can't help then 4 visits will be what it is. I don't think it is unreasonable for SS to ask what the family want to do - most want to to help their mother, but in your case if the relationship is poor essentially your mum is reaping what she sown so there is no need to feel guilty,.

Whilst we may all agree that this might be best solution, unless OPS mother is in last couple of weeks of life, most hospices will not take her and unless she is deemed to lack capacity around her discharge destination, it is OP' s mother who will decide where she goes, not the OP. There is good reason for this and I for one, do not want others making this kind of decision, against my wishes, just because one day I am elderly and unwell.
OP is fully allowed to say she will have nothing to do with her mother's care, but is not allowed to dictate what happens ( unless her mum is assessed as lacking capacity around this decision and OP has enduring power of attorney for her mother's Health and wellbeing)

Check carefully how long it could take for her to die. Unless you'd be happy to take a fair bit of time off work and your employer has quite a generous policy for these circumstances, I'd be very wary. Hospitals sometimes err on the side of caution about end of life scenarios in terms of timespan, so definitely get as much information on this as possible.

Your mum wanting to go home doesn't magically make your other responsibilities and needs disappear.

I'd also be very worried about getting left with no pain relief. My DF's GP was very good at home visits but I don't think everyone is as fortunate. Something else to check.

Did you read the part about a problematic relationship?

Hi OP, sorry this is happening - it's so hard. My dad was discharged to home to die, he had weeks to live - eight, to be precise. He had carers in x4 times a day, and support from the district nurse and GP in his later days (administering morphine). In his last week he also had someone to sit with him through the night (not every night, but this was to give my mum a break).

But despite all this, it almost finished off my mum. She had to do everything from clear up explosive poo to vomit, to dealing with his extreme distress (just before they put him on a morphine driver), to being up all night with him. She was so exhausted I was worried I'd lose them both.

The other thing is that Dad actually had a brilliant care package - the best. But that level of care is not guaranteed (it seems to be a lottery) and your mum may well find herself with less good care, less pain relief and so on - and you'll be the one having to deal with that. I would really caution against it.

As others have said, social services will always ask as they don't want to pay out. But you need to advocate not just for your mum, but for you, your brother, and your own family. To be able to care for her you also need to care for yourself, and what's actually best for her may well be not going home, but dying somewhere where they have everything she might need, right there, 24/7.

Yes this. There is no assumption behind the question, just stating a fact that she will need someone there 24/7- and asking if you are able to facilitate this.

It's fine to say no- they don't know your family set up. Lots of families do have the ability to have someone there at all times between carer visits. Lots don't.

I left my DH with my 2 small children and moved unto my sister's house for a week to help her husband and best friend look after her in between visits as she was so desperate to die at home. It's absolutely fine and not expected at all- you sound like you have loads going on and it wouldn't be practical. It sounds like a hospice or community hospital would be the best fit.

I would want to be at home, not in a hospital. I will have that option because I have loved and cared for my children in a way that a parent should. My mother, on the other hand, can die wherever she so chooses because I will not be involved in her care. She relinquished the right to have anyone say "your poor mum" when she failed to care for her own children. It's not always as straightforward as you seem to think.

OP, I'm sorry you're going through this. You've had excellent advice about being honest, and firm, regarding what you are and aren't able to provide for your mum. I wish you, and your DH, well.

Yes it’s usual. They just want her off the ward and with a tick next to her name saying ‘we don’t need to do anything’.

You have to refuse, be very clear you are not responsible for anything that happens to her (they are) and she should not go home until an appropriate care package is in place.

It's really hard looking after a dying relative at home. I had my husband at home for two weeks and it was awful. The carers came 4 times a day but they needed 2 at a time as he was unable to walk or do anything for himself and he was a 6'4" man so I couldn't do it.
He had a hospital bed downstairs. He had a hoist and loads of equipment. I'm still traumatised by it 14 years on. I also had my 16 year old son at home revising for highers.

My mum we managed to get into a hospice and it was much better. My dad couldn't have managed and I struggled to get time off work.

So say no if you can't . Sounds like you have enough on your plate. Don't feel guilty.

OP's husband has cancer. You don't know her financial situation, maybe she can't afford unpaid leave. She's already said she has a difficult relationship with her mum. Quit with the guilt tripping. What worked for you and your family might not be right for others.

We did this for a loved one recently. The care was making sure his wife (who was really caring for him) was able to rest and the children were loved and cared for. sitting with him on rotation through the night - arranging things.
I would not care for my parents if the circumstances were the same as yours. You live far away and don’t want to. That is fine.

i am really sorry you are in this position but despite your mum saying she wants to be at home - she cannot cope there and you and your brother are not able to care for her.

do not take delivery of the bed for your dining room. Just tell them no. They are trying it on.

I just don't know why people ask for advice when what they want is for people to tell them only what they want to hear ie A lot of reasons why they shouldn't. I have stage 4 cancer myself and am glad my family are supportive of me being at home .

The nurse was giving you the chance to say no.

You live two hours away and have a sick husband. This is not going to work. And I speak as someone who nursed her DH at home until he died. That was hard enough in my own home and with the support of our young adult daughters who lived at home at that point, plus hospice at home carers, Macmillan nurses and Marie Curie nurses in and out.

I could not have done the same for my mother. I simply couldn't.

If you say no and your brother say no, your mum is very likely to get free respite care in a nursing home. That's usually for up to six weeks, so if she only has weeks to live, it's unlikely that any payment will be needed. You and your brother can visit as often as you can, without the stress of responsibility for her.

You and your brother need to be united, calm and firm.

I agree 100% with that. We also had a great care package, but that was more than a decade ago, and now I'm sure it would be very different.

If I were to be dying of cancer, no way would I put my daughters through that again. Of course being at home feels like the gentlest option, but I'd be too anxious about what it was doing to my kids. Neither can afford not to work, and one of them has my little grandchildren as well as a full time job. And they don't love round the corner

It's pretty normal for healthcare professionals to ask what support family can / want to provide, so they can plan around it. It doesn't mean there's an obligation. You just tell them you can't do it, so she will have to have alternative care arrangements. Your mum can choose to go home and have the 4 carers a day, even if it's not enough. or she may prefer to go to a hospice. She may prefer to pay privately for 24 hour care at her own home.
Just advise what you can offer and let the professionals plan the rest with your mum. They can advise what care she needs, but they can't enforce it and your mum can also make the choice to go against advice - but she can't force you to be her carer so just make it clear how involved you're willing to be from the start.

You're assuming this family has the same dynamics as yours. I wouldn't be speaking to let alone helping my mum in her end of life

If you have a good relationship with your family and they can support, I'm happy for you that you are able to have things the way you want in your illness. If it was my mum, I'd do as much as I could to facilitate that too, if it was her wish. But we have a good relationship, she was a a good mum, even though it wasn't always easy just the two of us, and a wonderful grandma. It blows my mind how many parents still think they're entitled to their children running round after them in old age despite having put the bare minimum into the relationship, like my dad, who is a very different story to my mum.

You are projecting your own needs, wishes and situation on to OP here, and not taking account of the actual situation described to you.

Thanks again for all your helpful insights and kind words. And I’m fine with the criticism too, implying that I ‘should’ be doing more for my mum.

I do think most people understand that everyone’s relationships are different and we can’t judge other people based on what we have done / think we would do.

I am happy for people who have close relationships with their parents. I will do various tasks for my mum, visit regularly, etc etc. I have done a lot of that over the last few years, as well as cleaning her house, buying her items she needs. But I have now hit my limit and cannot / will not provide the required care. That doesn’t mean I don’t ‘care’.

I’ve told my DB that I’m not able or willing to provide that level of care for my mum. He surprised me by agreeing that he also did not think he could do it.

So that makes things easier, to have the same message.

I do agree with pp who have said the nurse was giving me the opportunity to opt out - I just didn’t interpret it that way at the time and felt defensive.

There will now be a conversation with my mum about going into a hospice. I spoke to the hospice staff yesterday and they would be able to take her.

My DB & DSIL will be having the conversation with my mum as I have 2 days of hospital appointments with DH.

I’ll report back on how that conversation goes 😬

Good update
we have a similar situation
all 3 of us have said we can’t help further.
we are waiting on a physical assessment but it’s obvious to us (not elderly relative) 24 hour care is needed.
Good look @Porkpieandmustard.
to us all in this boat.

My mum was immobile for the last month of her life. She had carers visiting four times a day and myself and my daughter had to fill in the rest. After three weeks I was nearing breaking point. I would be with her from when they left in the morning until they arrived to give her lunch. I would go home thinking I could have a break and she would phone because they had left and had forgotten to make her tea or hadn’t give her the remote for the tv. So I would go back. DD took over when she finished work and stayed while they came and put mum to bed and then DD sat with her till she was ready to sleep. It really isn’t doable unless you know it is for a very short time. Also, she would press her alarm in the middle of the night so most nights we were there at 3.00am. All that said, I am very pleased that she was able to die at home - peaceful and without medical intervention. It is possible to get support from your local palliative team and they did send someone to sit with her at night, but only for the last 3 nights of her life.

Not everybody’s mother is deserving of such loving treatment. Not every adult child has enough love or respect for their mother to do this sort of care. I hanger no intention of ever, EVER providing care for my mother thank you very much. She did terrible things to me add a child and teen, and I could tell you stories that would keep you awake at night ( just like they still keep me awake at night).

it infuriates me that some people are so short sighted they can’t imagine that not everybody grew up in a bloody Enid Blyton Perfect Family tour scenario.

Same here. My end of life care plan says that I want to go to a hospice or care home. I do not want to be at home. I just don’t think it’s fair on my family.

if your mum has capacity OP then I guess social services have to ask you (you say no), then if necessary they have to get a DoLs order if she is too sick to come home with a 4 visit per day order.

I’m sorry you are in this position but please say no if you are not able to be there 24/7. It’s not fair to either you or your mum otherwise.

One other thing, OP. Dad died at home. My grandma died in a palliative care hospice. Her care was better, and it was also better for us as a family - we could be there 24/7 if we wished, but we also had the option of taking a break in the knowledge that she was fully cared for. It wasn't traumatic for her or for us; we were emotionally broken but not physically. With dad, although he had good care and pain relief it was still pretty traumatic and it broke my mum, physically.

To be blunt, some people take a long, long time to die. They can't move, they're barely conscious, but they're still there - and they need an insane level of care to keep them comfortable. Why anyone thinks being 'at home' in that context is a good thing is beyond me - having lived through it twice myself, you can still be there for someone and give them a gentle, 'good' death in a context other than their own home - and in my view you're more likely to achieve that, actually, in a hospice or palliative care setting.