End of Life Care Purgatory

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DM is 63 and has been on end of life care for 5 days now. My siblings and I are sitting with her 24/7 in shifts. It is absolutely and completely exhausting. I have very young DC, a demanding job (taken leave this week), and a seething resentment of having to go through this. We didn't have the best relationship due to their alcoholism.

I just want it all to stop. How long can this go on for?

I have read they often choose the time someone is not watching to slip away. Can you ask one of the nurses? And have a break.

Oh OP
I have been where you’ve been - well in the sense of the waiting.

I did also did hear that people wait to be alone. Dad did. If that’s any help....don’t feel you have to be there all the time.

I must go to bed but will keep this thread on watch. Feel free to DM. I honestly feared I’d die of stress first!

Thank you for your responses. DM is still with us. I cant keep vigil for much longer. Dying of stress is a very good way of describing it. I think I need to pull back for mine and my families santity.

How long can this last? The consultants just shrug when I ask. Everyone has their own journey apparently 😣

Oh OP

the worst vigil I know of amongst friends is about a month! You can't really keep vigil. Are you on annual leave?

I am going to be blunt as that's what I would have found helpful from others. What's the deal with the 24/7, are you doing it because you want to do it or is there some pressure from siblings?

I certainly would have been around a lot less if I hadn't felt pressure to be with mum.

You DO need to pull back.

My situation was also a bit different than yours in that dad should have gone into palliative care about 3 weeks before he did. I knew I would be by his side most of the time, but in my mind, I had done goodbye - we had said it as well before he slipped into being mostly semi conscious.

but my last day of really being focused on him, I was at his bedside listening to music and a song came on, "What Sarah Said". Don't listen to it if you are not ready!!!! Major lyric is "love is watching someone die" - and I suddenly thought, OMD, no can ever say I didn't love him enough, I have been watching him die for SO LONG.

So without my mother, and if they'd put him on end of life at the right time, I would have returned to normal life mostly and maybe gone for an hour a day.

and please don't feel guilty about doing anything normal. Because I was staying with my mum, I didn't get the chance to do anything normal. But the first day I got back to my own home after his death - a week or so? just for a couple of hours to get clothes and check on the place - I put music on and had a little bop!! Because I hadn't been able to do that for 3 fucking months (he was ill a long time generally).

sorry for the ramble. I am just trying to brain dump anything that might help.

It is perfectly ok for you to decide that enough is enough, say your final goodbyes and leave her for the last time.

As mentioned above many people 'choose' to wait until they are alone to take their final breathes so this myth that there is something wrong with someone dying alone is just that - a myth.

My father had alzhemiers and had been bedridden and unconscious (well not really unconscious but unaware of the world outside) for many months. When the end was very near I visited him, told him I loved him but it was ok for him to go now; went home and waited for the phone call to say he had passed away. And for me that was the right choice and I don't regret it at all.

I think it's ok for you to say your goodbyes and tell your mum it's ok for her to go. Or at least cut down your hours visiting. What do your siblings feel about this? If you decide to stay can you do something productive (just reading a book or drawing).

Thank you all. Your responses really help. I've said my goodbyes (for at least the 10th time) and have told the family that I'll be stepping back considerably. There has been some push back, but I'm ok with it. I saw much more of the alcoholism than younger siblings did.

I've said repeatedly that we should all step back and allow her some space to pass alone, if that's what she needs. They wont hear of it, but that's their choice, not mine.

autumn you hit the nail on the head. I just want to feel a tint bit of normality, to see my kids 😓

So good that you're stepping back. Take care of yourself. In the end you can only do what you can do - and that's true of your family, too. If they need/want to do more than you from now on it does NOT reflect on you.
And you have your children to consider.

Glad it helped OP. There were so much text, I felt I threw a jelly at the wall and tried to frame it!

I did wonder if there was sibling pressure, yes. If she’s got 24/7 family in the room she might well need the space, I’m actually wondering if a staff member could mention that to them.

You’ve done the right thing OP. Take a deep breath, do at least one “dance it out” round for yourself and then have fun with your DC. It’s all fine.

We also didn't stay all the time, I was probably there longer than anyone else in the last 8 or 9 days when they put my DF on EoL, but that was probably 4 or 5 hours max a day. I wouldn't have been able to do that if DD was younger. DF slept a lot towards the end anyway. I was happy he had good care in hospital and it was clear that sometimes he wanted us all to "bugger off"!

It is brutal though.