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]

Social services will always test the waters to see if they can dump everything on the family, costs them nothing and they don't have to set it up, because the relative will just deal with it. Push back. Be very clear in what you can and can't do, they will then need to devise the right carer package, and provide funds if your DM has below the threshold of savings to self fund. If she can't self fund though, and needs more than 4 visits a day, it is very likely they will only fund a care home place and not pay for more carers at home. She would probably have to self fund if she wants more carers visits at home.

Your poor Mum . I think you and your brother should make every effort along with carer support to let her come home . No one wants to die in hospital if there is an option to be in your own surroundings even if just for a short while. My own Dm lived with me for the last months , my sister came for the last two weeks and we took it in turns to sleep in her room. We had carers 3 times a day and the district nurse on hand .. my sister worked FT but took it off unpaid , I was retired and not in great health but I'm SO glad we did it . Saying all that , if you don't want to then maybe it wouldn't be the best thing for your Mum . Hospice care can be excellent for those who don't have have willing family .

If you don't want to do it then refuse no one can make you.
Don't let anyone guilt you either.
It is the most hardest thing anyone can do.
I had a great relationship with my mum but like you didn't want to be her carer.
When I refused to even think about it the hospital was very good in finding a lovely place.
I was happy with her care,

You’ve been asked the question. You need to give your honest answer so they can plan accordingly.

A friend of mine recently went part time at work for 3 months to share care with her sister for their dying father. She moved into his house for half the week and then they swapped. Her employer was supportive.

You don’t have to do this but some people choose to, so they’re right to ask.

It was good that your family was able to arrange that, @Contrarymary30 , but it doesn’t sound like the OP’s situation is similar. OP’s husband has cancer, and her relationship with her mum is not good.

OP, if this isn’t something you can do, then you can say no. They will find an alternative, a hospice or hospital care. Or she may choose to go home with carers 4 times a day and they may allow it.

Not everyone is able to do this, I’m pretty sure I couldn’t, and you have to stay well for yourself and your DH. Her situation is based on choices she has made over the years.

She's already caring for a seriously sick husband! Not sure the two would work together!

Your mum wants to go home.

the only way she can go home is if family are with her 24/7.

the nurses are asking if you (plural, as a whole) can do that.

if you say yes, she can go home.
if you say no she cannot.

they are allowed to ask.

They will always ask the question as some families will absolutely rally round for last week's/ months and some will not want to be involved. The hospital will want to discharge mum to a safe situation, however this will need to be planned and discussed with her. If she needs 24 hour care and it's fast track funded, speak to the continuing healthcare nurse about how much they will fund. If they would pay for 4 calls daily, could your mum afford to top that up to fund 24 hour live in care? They may allow you to put their funds towards that.
If you are both 2 hours away and you work, they would not be expecting you to be part of her daily care package, but might expect that you could do a weekly online shop to be delivered etc. Just tell them what you CAN manage.
If mum needs 24 hour care and cannot afford that, she may need to consider alternatives. If she refuses and has capacity to make an unwise decision, she may just have to be home alone between visits.
It would be useful for you to get clear info on her life expectancy as if they are thinking she may only have a few weeks you may plan differently to a few months, and her find may stretch to more top up care.

If it’s not possible then say that. It isn’t fair to ask others to put their life on hold. I say that as someone who has multiple health issues. I wouldn’t dream of imposing on my dc. Yes it’s nice to go home. But there are other options where you can be comfortable and well cared for. People can be very selfish. Your brother has cancer. You do not feel able to provide this because you aren’t close. That’s enough of a reason. It’s not possible.

It’s unlikely to be a hospice; nursing home is most likely.

Yes I think the nurse was offering you the chance to say no.

Nursing someone to die at home is not an easy thing to do. Frankly I’m not sure I could do it. It depends a bit what the expectation is between care calls; dp’s dad died at home early last year and all we did between calls was chat or let him rest, but he was cognitively intact and we knew it wouldn’t be long (6 days). I have a relative who took years to recover from her husband dying at home. It is ok to say ‘I can’t do this’.

How would your mum feel with a middle ground of residential care? A bit quieter and easier visiting than a hospital but with staff around round the clock to support.

@Porkpieandmustard I’m sorry you're in this position, it’s terrible. Much love to you x

Many years ago I had a patient who was dying, it was going to be a matter of hours. She had suffered from serious mental health issues throughout her life and it hadn’t made her the greatest mother. I remember changing her pyjamas before her DC arrived and made sure she was comfortable. Once her DC arrived, I said I’d wait outside incase they needed me. After 15 minutes they came out of her room, her daughter was tearful but they did all they could. They didn’t have emotionally more than that 15 minutes to give their mum. They actually had lunch reservations (the lady’s son had driven a few hours) I asked them would they like to come back after lunch or could I even make them something from the kitchen, but they wanted to go. I said goodbye to them and sat on the bed with their mum as she held my hand and cried to herself. She died about 2 hours after they left. It was heartbreaking. But she died being cared for. I made sure her mouth wasn’t dry, i held her hand and kept her as comfortable as possible. It was a pleasant death, nothing too dramatic, she just drifted into a deep sleep. Some of the other carers were cross at her dc for not staying with her or leaving after a quick goodbye. But adult children can only give to an elderly parent what they’ve got in them, they knew she was cared for, they didn’t leave her to die alone, they knew I was there and nurses on standby should she need one. I often think of my patients DC when I read threads like these. They may not have done what people would expect DC to do, but we don’t know what people have been through with their parents. To ask a adult child to nurse an elderly or sick parent until they die is a huge ask and if things haven't always been great in the family dynamic, then whatever time you can emotionally and physically give, is quite enough. Please don’t allow anyone, social services, other family, Tina who works in the shop who nursed half the village to their graves, to make you feel guilty for only doing what you can manage.

Thanks for all these quick responses.

She is refusing anything but going home. The palliative care team spoke to her today about a hospice and other possibilities, but she won’t entertain them.

In terms of how long she has left, we don’t know exactly, but the discussion about fast track 1 that was had today regarding discharge seems to indicate that she may only have weeks left.

Thank you @Brassknucksthat was a powerful message.

Ask about CHC funding if she is at end of life she can be fast tracked onto that and there is a more funding available from Health.

Have you looked into hospice at home care if that is available locally? My aunt had that for the last few days of her life recently.

If it’s weeks, you can pay for private 24 hour nursing. It is not cheap, but it sounds like she might have a house? So there could be options available for taking out a loan/equity release that could be claimed back from her estate?

If she is eligible for CHC then the care will be funded. In our area it's funded for 4 calls a day and x3 waking night sits.
Is your mum confused? Has she got dementia? Falls risk? Most end of life patients can have this amount of care and help from relatives popping round. Not what most people would like but if they only want to go home sometimes that's the only option.

Do what's right for you and your family, it's very difficult to care for someone who is end of life especially if you have a strained relationship.

@Porkpieandmustard did you note this post, it is absolutely what happens

@stichguru
"Social services will always test the waters to see if they can dump everything on the family, costs them nothing and they don't have to set it up, because the relative will just deal with it. Push back. Be very clear in what you can and can't do, they will then need to devise the right carer package, and provide funds

You really have to be very firm and given the circumstances of both yourself and your brother, they should be getting a care package/fast-track NHS continuing healthcare or other palliative care services in place.

And they are highly unlikely to delay the transfer of her care from the hospital (who seem to have already medically cleared your Mum for discharge) to her home.

Such a difficult time for you all. 🌸

It is okay to set limits, both because of life practicalities and because of relationship issues.

I have thought long and hard about this. My limit is I will handle logistics, but I will provide absolutely no hands on care for my surviving parent.

if she only has weeks or perhaps months, I would look at the option of liquidating her assets to provide care.

And that care package may be four visits a day, perhaps more. They are unlikely to fund someone to be with her at home 24-7. That may be fine, but you need to be OK with that meaning she may well die alone. It sounds like she has capacity and will understand the impact of her choice and if she is OK with that then you should be too.

This isn’t fair. Social services are only able to provide 4 x calls a day. This is what has been offered. But, for the OPs mum to go home as per her wishes, she needs additional care. The nurse, rightfully and understandably, has asked if family are able to support to allow this to happen. Many families do this. My mum looked after my DGF at home at end of life because she wanted to.
it’s also fine for family to say no.
OP I hope this thread a has been helpful x

Thanks @hellorotten and everyone. It has been extremely helpful and given me lots to think about.

(Latest concern from DB - will hospital bed fit in the living room? We will find out tomorrow).

You absolutely must not commit to more than you are 100% sure you can and want to do. No adult is obliged to care for any other adult.
I always become confused with the whole safeguarding and capacity issue.
It seems from other posters that if a person has the capacity to choose to go home they can do so, however dangerous/ unwise that may be? Surely at some point some sort of safeguarding kicks in to make them accept they need residential care?
I'm sorry you're in this situation op. Adult care is an absolute minefield, with the bare minimum offered often, and you need to know what to push for.
The problem is finding out, with clarity, what the actual options are.
Good luck.

I have a problematic relationship with my mother… in fact I’ve not seen or spoken to her for years. I will not be providing any care…. Similar for my father but we do at least speak. For him I will do care admin, ordering food etc, no care though.

You can and must only do what you are truly able and willing to do. I would suggest she goes to a nursing home to get out of hospital, ensuring all her care needs are met.