annanotbob2's Diaryland Diary


Very quick

This week has ended up being all about Elder Daughter. I mean, there were other things - I had a one-to-one meeting with the new writer-in-residence at the recovery centre but that seem like a lifetime ago now. And a ghost-weaving workshop... I'll come back to that another day.

First I had to get ED's benefits form filled in, which I knew was going to be hideous so I went to a charity that helps people with all that. The form had various areas of life - eating, mobility, dealing with money etc, eleven in all, I think, and for each one you had to tick a box from a list which started each time with 'I can manage this well on my own' and went through a series of changes till arriving at 'I can't even think about doing any aspect of this - it is entirely done for me by other people' (or words to that effect). My ED used to be at the top of each column - of course she did - she was a strong capable woman who lived her life - but now she's at the bottom for each one. So you have to tick the little box and write about it in the big box. Awful. Unbearable. But the guy who helped me was great and made it all as painless as possible - I didn't even cry. So that was Wednesday.

Thursday was her birthday which had a dreadful build up as no one else wanted to come and see her so I hated them all, I mean HATED for a while but in the end Younger Daughter came and brought Grandson and his girlfriend and Bloke turned up out of the blue having seemingly ignored everything about it. ED was well enough to go out but not to travel so we just went round the corner from the care home and sat outside a cafe with coffee and cakes and somehow it became quite jolly and light-hearted and I hope she enjoyed being in the midst of her family, laughing and teasing each other.

Then yesterday afternoon I picked up my phone, which I'd inadvertently put on silent, to find a list of missed calls from the care home. ED had had a seizure so they'd called an ambulance and she was on her way to A&E (accident and emergency ie ER). Ah man, I cannot tell you. I thought we'd arranged an end of life care plan which included not going to hospital other than for simple achievable purposes, like replacing the feeding tube, but it never got finalised and anyway, even if it had, she'd have probably ended up there, because what are they to do? We arrived at the hospital at the same time and she'd stopped having the seizures by then so I managed to persuade them not to do CT scans and X-rays because why? What did they anticipate finding and how would they respond? What treatment could they offer? Maybe she'd had a stroke or a 'neurological event' but there was no treatment so no scans - scans are awful because she's immobile and ends up being heaved about and no, just no. Which they agreed to, thank fuck. They took blood and found she has an infection so gave her some strong antibiotics in liquid form to go via the feeding tube and we took her back to her home in the care home. 'We' being me, her sister, L a member of staff and A the manager who wasn't working but got a babysitter and came in on a Saturday night because they think of themselves as a family and ED is one of them so of course she came in. I asked the doctor what we might expect and she said ED would either deteriorate sharply overnight or she'd fight it off and that's what she did. She fought it off.

She was in a lot of pain - evidenced by groaning - so morphine was given, and there was a lot of facial twitching, but nothing more, and this afternoon she settled down to a peaceful sleep and fucking hell, we all made it through to fight another day.

A GP came out and is sorting out all the end of life arrangements although this could still be some way off. Or not. But the care home now have all the meds she might need and the hospice have been alerted so that's all good, I guess. I don't even know what's a good thing any more. Too much, far too much.

I went to the beach and swam in the calm blue sea that had finally arrived and have cried and cried and cried but here we are. I had a shower and changed the bedding so double clean and now I'm offski.

I am grateful for: the NHS of course - she was seen at once and although they are being cut to the bone, the staff were kind, respectful, diligent, and lovely, all at no cost whatsoever. I am also grateful for: YD; the wind fucking off at last; being able to float in the sea; having a little dog snoring under the bed.

12:15 a.m. - 26.08.19


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