nearing the end

[rachel1973]

It's been nearly a week since my mum last had a drink and several weeks since she last ate properly. She is mostly sleeping now and even when her eyes are open, I'm not sure she is really seeing what is around her.

I keep going into her room to see if she is still breathing - sometimes a long pause so I need to wait, other times really shallow its hard to see and sometimes gentle snoring.

I know the end is coming but its the not knowing when that's the worst - the last few nights I have woken up at random times in a panic wondering if she is still alive. I want to be there with her but worry about missing the end.

This sucks 😒

 

[Andrew_McP]

It's almost exactly a year since I went through this with my Mum. It will not last forever... but it will feel like it. And sometimes you may even wish it would. Because although nobody wants a loved one to struggle on needlessly in that awful limbo, the enormity of this final goodbye weighs heavily... especially in the small hours.

I scribbled a pointless but maybe cathartic song at the time, trying to vent my complicated feeling. Some of it:

"I came to see you in the night, I came to see if you're all right... you were.
There's nothing more you need from me, but I still sleep so fitfully, my dear... oh, oh, my dear.

Oh please don't leave me while I sleep, I know I shouldn't want to keep, you near,
But all the stars may well go out, if you're no longer hereabout, I fear... oh, oh, I fear."

There are no words to accurately capture this time though. But you'll be ok... eventually. And your poor old Mum will finally be free. All the best to you both, and to anyone else experiencing something similar. I hope you're all getting the support you need and deserve at this time.

 

[canary]

Hello @rachel1973

Im sorry to hear about your mum. I understand about that limbo land - you are now in the last long vigil. I do not think that it will be long now - she may even have passed by the time you read this - as the breathing changes right at the end.

Do not beat yourself up if you are not there right at the end. People who die from dementia seem to have some control over the exact time that they die and many prefer to be by themselves (my mum did this). You could spend many hours with them and then they pass away while you nip to the loo. The time that you spent with her during her life is more important than the final few seconds
xxx

 

[hammang]

It's been nearly a week since my mum last had a drink and several weeks since she last ate properly. She is mostly sleeping now and even when her eyes are open, I'm not sure she is really seeing what is around her.

I keep going into her room to see if she is still breathing - sometimes a long pause so I need to wait, other times really shallow its hard to see and sometimes gentle snoring.

I know the end is coming but its the not knowing when that's the worst - the last few nights I have woken up at random times in a panic wondering if she is still alive. I want to be there with her but worry about missing the end.

This sucks 😒

We went through this in October when my lovely dad died with end stage dementia. I send you very best wishes with what's ahead. Can I suggest you watch Hospice Nurse Julie on social media? (Tiktok instagram etc) She posts amazing content about end of life and it's a great comfort. From what you've said your mum seems to be on her very last journey. Have you been in touch with your local medical and nursing teams? What about family members? Can they sit with you and help with practical things like making sure you eat?
Dad had a syringe driver which helped so much.
I really hope that you look after yourself and that everything is peaceful for mum.
PS I agree, it does suck! it's one of the hardest things I've ever done in life. Everything passes, it's for the best for Mum to find peace and you'll get through it to the other side.