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]

Don’t be pressured, OP. I had this with DF. We had a very difficult relationship and I would never have cared for him. I also lived 4 hours away and had a newborn daughter plus a toddler. I had to be very firm but in the end they placed him in a lovely care home where he had 24 hour care and company and I didn’t have to worry about him. It was the best option and there’s no easy way to deal with the end of life conversation, so you have to be honest. And if you feel guilty, try not to. People tell me I had no reason to feel guilty - I still do, but it was very much the right decision. UnMumsnetty hugs.

Quick update from me.
Thanks again for all the helpful advice and kind words.

My mum moved to a hospice yesterday. (It’s a beautiful place).
We think she probably has a few days left now.

Oh @Porkpieandmustard - that must give you mixed feelings.

I am glad she is in the hospice and that it is beautiful. I hope it means you can spend whatever time it is in a way you can all feel comfort and peace.

I was thinking of you and I can't see if you have started a new thread so I wanted to check in with how you are doing (if you look back here - you may well be offline at the moment)?

I am so glad she got into a hospice. It’s truly the best option I think. They are specialists so of course they provide very good care for the person and their family. I wish everyone could have that option honestly.

Most (maybe all?) hospices are charities and survive due to people making donations and leaving them money in their wills so we made sure we made as generous a donation as we could as the so deserved it. Mum had actually been going there ‘day case’ for the last year or so of her life and that was also an invaluable service for her. I am so glad these places exist.

Sending you love, OP.

Thanks for the kind words. My mum died yesterday. It was extremely peaceful. The hospice was amazing- the staff were lovely.

I think she got much better care than she would have done at home as it was all there at the touch of a button.

@Porkpieandmustard 💐

I'm glad things were peaceful and your mum was well cared for. Look after yourself.

I am very sorry for your loss, but I am glad it was a peaceful and supported death. ❤

Adult Social Care absolutely do not do this . Please dont spread misinformation like this.

Reading in a rush so haven’t read this whole thread. I work in a hospital and often plan discharges like this for palliative patients. Have they given you any indication of prognosis?

I think what they are suggesting is staying with her 24 hours a day while she goes home to die essentially. That makes me think is days to short weeks. I appreciate that you live 2 hours away and work, but lots of relatives during this phase will I guess put work on the back burner/compassionate leave until the inevitable happens. Could you and your brother do a week on/week off?

My sympathies for you all at this difficult time

In my experience they totally do. If your experience is different fair play, but saying what I have experienced multiple times is not spreading misinformation.

I'm sorry to hear about your mum but I am glad the hospices was good. I have had experience as both a volunteer at a hospice and as the daughter of my father dying there. 2 different hospices and both were fab.

What do you do if the patient has no relatives, please?

I've worked in ASC for 30 years and have never seen others try or tried myself to get relatives to do care, it's a minefield in my experience and best avoided.

I don't think it is either an assumption or an expectation, but a normal, reasonable question to ask during planning for discharge to establish what going home would look like.
No pressure either way, but the hospital need to know know what is available or what isn't in order to facilitate a safe discharge.
This includes understanding if family or friends are able it willing to cover the gaps in care, if not alternatives such as care homes would be considered.
You have every right to say no, for whatever reason you like, please don't feel it's an obligation.

It’s like parents who don’t help with grandchildren childcare. Every family has different dynamics and you can only do what feels right for you.

Might have been worth at least reading the OP’s updates

Sorry, didn't read your last post. I'm glad she got to the hospice and all was best in the circumstances.

We’d do a full assessment of care needs. If their care needs can be met by 4 care visits a day and we felt they would be safe in between those visits, then the patient goes home. Lots of family members at this point will offer to rally round and stay with the patient. This is more for support, rather than providing care although there may be some caring responsibilities eg changing pads, helping transfer on/off a commode etc. it’s important to gauge what the family can or can’t provide to help steer the discharge destination. It is by no means a cost saving exercise.

If their care needs assessment identifies that they wouldn’t be safe between those visits then we would discharge the patient to a placement with 24 hour care. Hospice care is very scarce in my area.

OP I am very sorry for your loss. I’m glad she got to a peaceful hospice and was well cared for.

They are currently trying to guilt trip our family into providing 24hr care outside the 4 30 min carer visits for my DGM, so yes, while they shouldn't, I'm afraid some do.

It sounds in this case like OP's DM went to a decent place and it was the right outcome.

DM came home, no indication it was the end of life. But she was immobile after breaking her hip. she had carers 4 times a day but it ended up with me having to be there all the time in between their visits. Even when I thought I could have a break she would phone because they hadn’t made her a cup of tea or hadn’t give her the remote control to the tv or she had dropped the paper. I did this for three weeks and I was exhausted even though my DD was sitting with her in the evenings. If your mother needs someone 24/7 that means night time too. How do they think you are going to cover that? You need your GP to link you up with the local palliative care team but they will only cover nights when someone is near the end. Also, in the last week we had the district nurse on speed dial and a special End of Life package of drugs they could use if necessary. Unless you can pay for a carer 24/7 your DM simply cannot go home.

Sorry for your loss OP. It must be a relief to know it was a peaceful passing and made easier for you and her in the care of a hospice. You clearly made the right decision