Palliative care

[Nomorebear]

Hi everyone, having a tough time at the moment with my mum.
She’s in hospital and has been saying that she wants to die for the last week.
She’s now on palliative care and we will have a discussion about where she should go soon.
She is very thin, not eating much, but still drinking.
Two days ago she was sitting up in a chair, but pretty sleepy and using a commode.
Today she is just in bed and using a bed pan with not even the energy for a commode and mostly asleep.
Worried about my Dad coping at home. Not sure she would be eligible for a hospice as guess she might go on for a while yet.

Sending lots of sympathy. We've just lost a very elderly relative and it's so hard. We were told it would be hours and then he held on for well over a week. A few years ago with another relatives they said it could be weeks or months as she was still well in herself they just weren't pursuing treatment and less than 2 days later she passed away. Even the greatest doctors can't predict these things.

Have you had a chance to talk to the hospital? What are they saying the next steps are? Do they want to discharge?

The hospital will have an input into what happens next. With my late husband they said he was too poorly to transfer to the local hospice but that they would look for a dementia/nursing home for him. He had a number of serious medical issues.
The hospital had a member of staff charged to find a suitable place. However there was no home with a vacancy & the medical expertise willing to take him. Therefore he remained in hospital for exactly a month until he sadly passed away.
Similar to your mother he became more sleepy and unresponsive over the month.

You should be offered hospice at home and home care , with a view to moving into a hospice ( should you want to) when you get closer to the end.

Ask for a fast track to be done via CHC if she is now classed as palliative she will be able to receive funding for care at home or Nursing / Residential placement. Does she have a Social Worker assigned to her? As part as the discharge planning process this should be explained to you.

Phone adult social care. You need a social worker and a referral to the palliative care team. Does she have carers already? Carers will be needed too. Speak to the hospital and find out what the plan is. You need to be vocal and present.

You don’t need a social worker. All you need is a discharge plan.

Thanks everyone for your helpful messages.
Mum is 74 and has a number of life long respiratory issues.
She just keeps saying she didn’t think it would be this painful to die 😢.
Everyone keeps encouraging her to eat (which she isn’t really) and I’m not sure that’s the right thing either.
We are supposed to meet with someone from palliative care team today, so hopefully there will be a plan.

How is your mum today? I hope your meeting the Palliative care team is helpful- if nothing else they can direct everyone to stop pushing her to eat if it's getting on her nerves.

@AnnaMagnani we’ve been told that she is probably too ill to be moved.
Nobody can say for sure, but I get the feeling we are looking at hours / days.
In some way, it will almost be a relief when she goes as it’ll mean her suffering is over. But this process is just heartbreaking 💔.
Thank you for asking.

I'm so sorry to see this post. It will be heartbreaking for you to see your mum like this.

Has she got end of life meds prescribed and a syringe driver in place? If not, ask for one. She can have morphine and tranquillisers to ease her passing.

I am sorry to hear that. I hope it is not too long both for her and for you as it sounds as if she is ready to go. I also hope the staff are supporting you so that you can stay (or not) as much as you need to.

They did say they would arrange for a syringe driver, but nothing has turned up yet.
I will chase it up in the morning.
Currently wondering whether I should go home and come back in the morning or stay here for a while longer.

If the syringe driver is prescribed then they should have set it up!

I'd ask the nurse looking after her what is happening about it now as you were told by x professional that it would be started at y o'clock and it is now z hours later.

Given time is important now, they should have got on with it - either they haven't got a doctor to prescribe it or the nurses haven't ordered one from the equipment library. It can't wait until tomorrow.

@Nomorebear Please don't wait for the syringe driver, there is no way she should be in pain.

Speak to Staff immediately

eta; once she's been made comfortable with the correct level of pain meds, you'll be able to leave knowing she's no longer suffering.

Just wanted to thank everyone on here for their helpful responses.
Mum passed away (with plenty of morphine) early yesterday morning.
We are devastated she isn’t with us anymore, but at least she’s at peace now.

I'm very sorry about that @Nomorebear

At least she wasn't in pain while she died, and you were able to be with her.

Sending much sympathy to you and your family, OP.
💐