End of life care - what to expect?

[PatchworkOwl]

I've been caring for my grandmother for a few years and she has now been moved to end of life care. She's in a nursing home, and well looked after there, which is a great relief.

She has dementia along with a range of other health issues. Her quality of life up until now has been varied, but overall I'd say she still enjoyed things like having visitors, music, some food. We were very close, more than a regular grandchild-grandparent relationship (her child, my parent, is deceased) and I am her POA and next of kin.

She's currently mostly non responsive, sleeping a lot, although has started eating again.

Can anyone tell me what to expect with EOL care? I know they've stopped medication. I have no idea how long she'll be this way and feel totally out of my depth, despite all the caring experience.

I'm so sorry that you're going through this @PatchworkOwl

Can the manager at the home give you any idea of how long it will be?

Some things I liked to do at times like this are to play a favourite piece of music, apply lip balm and hand cream and using one of the mouth moistening kits

The rule of thumb I've been given (I sometimessee palliative patients) is that if they are deteriorating month to month, they have months; if going downhill week to week, they have weeks; if going downhill day to day, they have days.

It's lovely that you have such a close relationship. I wish you both peace.

Thank you for the ideas. We used to sing together, but I get too choked up trying to sing now so will try music instead.

The care home don't seem to know how long she could be like this. We've had a few times over the last while where they thought she was close to the end, but then there has been a change. I've rushed through each time, but I can't keep doing that if it continues this way (dc are young, I work irregular hours, and we live 1.5 hours from her).

Thanks for replying, this feels like a particularly lonely time. Also, sorry for your loss, it sounds like you've been in a similar position.

It is lonely but you have this board and there are usually people around 24/7

Thank you

With my dad, he stopped eating and after that stopped drinking. They lose the ability to swallow. He did hang on for over a week after we’d been told it was imminent and we’d all started drifting back to work etc. He passed in the night while none of us were there.

Thank you, that's also really useful to know. It has already gone on longer than I'd expected as she seems to have kind of plateaued. I think I need to somehow try and be prepared for either this going on a while longer, or ending suddenly.

She was really good to me, I was very lucky to have her.

Thank you for sharing your experience and sorry for your loss.

I'm trying to make peace with accepting I probably won't be there at the moment she dies. She's a distance away and my children are still young. I also have no other family support.

We've spent a lot of time together, and I'll try to focus on that. If you don't mind me asking, did you feel OK with not being with him at that moment? Did anything help you come to terms with it?

Like someone above said, if she's deteriorating quickly, then sadly it may be imminent.
My mother was diagnosed with cancer and was gone within 3 weeks, we didn't even get to the biopsy stage, it was that quick.
When she received palliative care in the hospital, the symptoms was very gradual. When people start breathing in a very rattling way then this is your sign the end is very near.... doctors came in one day and said she has 48h left, and It was precisely 48h like they said.
I know this sounds absolutely awful but that's how they things go sadly. Seeing someone passing really changed me as a person, but I could let her "cross" on her own.

The family had spent all weekend with him in his room at the care home. There is a part of me that wonders whether he was waiting for us all to go away so that he could slip away without fuss.

We did Spotify and I chatted about the good times. She wasn't keen on unnecessary touching as she seemed to feel pain at times even with the driver in but she did enjoy her hair being stroked at times.

Wishing a peaceful passing for you all.

She had a sharp decline and it looked like she was near the end, but appears to have plateaued. I'll look out for changes in breathing, that's helpful to know, thank you. Sorry for your loss.

Yes, I've been told that by other people too, sometimes it seems as if they wait until everyone / someone specific has left the room.

Thank you for your kind wishes.

She likes when I brush her hair, and seemed to like when I put on hand cream, but moves her hand away now.

She hasn't been able to speak for a while. Sometimes, I'm sat there monologuing at her and think she must be fed up of hearing my voice! I just sit in the quiet with her sometimes too.

Its really difficult isnt it. You want to be there at the end but sometimes it isnt always possible. With my parent I had a robust conversation with the Liasion Officer at the GP Surgery. We agreed that Mum would be made comfortable but if she didnt want to eat or drink very much we would let that happen. She had been in a lot of pain in the previous weeks. When I saw her the day before she passed she said she was free of pain. The EOL drugs were working. I left her saying see you tomorrow with a cheery wave.

She died the next day. One of the care home staff were with her and they said she asked them whether she could go as she was so tired. They gave her 'permission' and she just slipped away. She hadnt been eating or drinking very much if anything.

Sometimes you need to watch that someone isnt trying to 'build' her up food and drinks wise. She doesnt need food and drink where they are going next. Mum was ready and although I wish I had been there it was OK in the end.

Thank you for sharing your experience, and sorry for your loss. I'm glad the end was pain-free, that's what I'm hoping for my grandmother as well.

I have been wondering about the eating and drinking, and what the home's guidelines are when someone is at EOL. It's probably something I should speak to them about.

I've been trying to think about how, even if I'm not there for the last moment, I was there for so many others.

Definitely speak to the care home about eating and drinking. At the beginning of all of this I thought that someone might thought I was trying to do her in! She was very old and ready to go. They had my agreement to not actively treat any infections but she was to be kept pain free. I didn’t want her to pass away in our local hellhole of a hospital which she had already been in and out of over the past year.

I visit her grave regularly and speak to her about family stuff. Who is doing what etc. She has Roly and Gill who I don’t know but who are next to her and say hello to them too and to look after each other as winter is coming. Sounds daft doesn’t it and I would never think I would end up doing something like that but it’s surprisingly common!

When a close family member of mine was in end of life hospice care, one of the wonderful nurses there told me that I should try not to overfocus on being there at the end.

She said some people are, and some aren't. Some dying people seem to 'wait' for those close to them to leave before dying. Some are the other way around, and seem to 'hold on' before dying.

She said if there's anything you need to say, say it, and the rest isn't in your control.

It really helped me gain some perspective. It's not like the movies, and it doesn't make you a bad person if you're not there. Wishing you strength.

My lovely mum was on a week of end of life care with dementia. I sat with her, read to her and played music, also got her lovely roses for her room. So sorry you are going through this it's so sad.

Thank you for all of your replies.

It has been a long and often lonely road being a carer, and your messages have helped me feel more understood, and less alone, at this point.

Is there anything else you'd recommend I do, from experience? I've been trying to do some normal things (did some exercise, took dc to the adventure playground) but am so exhausted afterwards so don't know if it's worth it.

One thing that really helped me in the times you can't be with them was walking by water. I read afterwards that it can be really beneficial for your MH.