annanotbob2's Diaryland Diary



I set the timer for fifteen minutes because it's late and I'm knackered but I lost four of those minutes already, twatting about on twitter and facebook, arguing with strangers about Brexit and Trump as if me stating my opinion will make any difference to anyone. Honestly, you'd think I'd have learned something by now.

Daughter isn't doing well, hasn't been doing well all autumn and I've been buying the care home line that it's 'just' a chest infection and another one and another one, when actually it's not, it's something more intractable and significant than that and it's too fucking awful to contemplate, but there it is. It's too much like my brother, who started to gurgle with fluid in his breath. He kept his wits and was able to accept a bit of treatment then, on realising that it wasn't going to cure, only ease symptoms very slightly, was able to, and did, refuse more treatment, thus avoiding a long, painful and horrible decline. Daughter doesn't have these options. I don't know, I may be getting in a state unnecessarily, but I think not. I intend to phone the MS nurse tomorrow, or maybe email her in a bit, after I've written here. ED is distant, withdrawn, inside herself. I don't like it. 

After that I don't know what else to write about - it's all a bit inconsequential in comparison, yet life goes on. I'm not sure how it goes on or why, but here I am. I'm still on the writing groups, with plans for maybe a local one which has been suggested by someone who would like to attend and says she'll help me set up, doing posters etc. I say yes, but don't know if I can.

The wheelchair woman came to the care home yesterday and we spent two hours fiddling with the adjustable bits of the chair to make it more comfortable and secure, so that ED doesn't slide down in it when pushed or driven over the bumpy roads and pavements. I took photos to make a display for the wall in her room near the hoist so that every one of the care workers knows how to place her, but I've not been able to do it - she doesn't look as if she'll ever sit in it again, never mind going out. But this is probably me being pessimistic, scared of hope, all that kind of stuff. 

I took her out in the rain on Sunday, because I'd promised to take her out and she blinked hard for yes when I asked her if she still wanted to go. She also blinked hard for yes that she didn't want to go home when the thing we went to was over and it was Sunday and in that town there's nothing open that's wheelchair accessible after five so we went onto the beach in the dark and the wild wind and the drizzle and it was fierce. At the time I thought it might be dodgy, she was gurgling in her breath then, but she's a forty year old woman so she must be able to make choices, especially about experiences. I can't tell her she has to sit safely in her room and never hear the waves crashing on the shore again. She has to choose. 

I want to speak to Younger Daughter and Son about all this but I can't speak for crying. I'm very lonely with it all but I don't tell anyone. I can't manage to call anyone when I need to. I can't bear the thought of them wanting me to shut up and go away but not feeling able to say it. No one calls me to see how I am so I assume they'd rather I didn't call them. But I am struggling now.

12:30 a.m. - 05.12.18


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