annanotbob2's Diaryland Diary
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I keep thinking I'll write but then I haven't and always when I don't write for a while it's because things are bad - usually they're bad and I don't want to have to face them. And so it is.
During my session with the end of life doula today she said she thought that what I'm going through with ED is the hardest she's come across so far. Which was quite reassuring somehow. I feel as if I'm doing badly, but I'm not, I'm still just about standing and that in itself is good.
I kid myself about how long this has been going on as well. Searching in old blog entries for the day when I found out about not getting my pension,which I knew was in 2012, I came across this passage, from February 2012, when ED was still living independently and had come to stay with me, together with her son, her sister (YD), my friend M and M's son.
"The hardest part was being with ED amongst others. Usually it's just me and her, at her place, with Grandson at school and Son-in-law at work. We get into a groove bumbling around and it's easy not to notice how she is. When other people are with us, especially articulate, argumentative ones like M and YD, there's no escaping the fact that my girl, my lovely bright smart-arse daughter, has early onset dementia, or something equivalent. She bursts in on a conversation, reciting the names of her cousins, proud that she can remember them, as if this is evidence that her mind is fine. The mind that studied Ancient Greek and Latin, that played four suit spider solitaire and got it out more often than not. She kept asking what her brother was doing these days and each time was amazed and impressed that he's doing a law degree, as if it was news, again and again and again. I have never in my life had to struggle so hard not to break down and weep a vale of broken-hearted tears. I succeeded but the trouble is if you're squashing one emotion into a corner, they all go, and there's no access to any of them, just a blank coping, holding on kind of vibe."
And that's where we've been ever since, sliding further into despair, or numb. I can't believe I don't even drink or smoke spliff any more. I mean, I haven't given them up deliberately but I hardly ever do either.
Since I last posted I've had my 65th birthday, for fuck's sake. I really am an old woman. Never mind when I grow up I want to be an old woman. Here I bloody am. Still not grey though. Well, a bit.
There must have been stuff happened in the last few weeks that I'll want to remember but it's all gone. Apart from a shocking confusion at the care home, when ED's catheter tube became dislodged and emerged between her legs. When I arrived, the person who opened the door to me said the district nurse had been called because ED was in pain and had been given morphine and that the tube was coming out through her vagina. I was horrified - she doesn't move so for this to happen, for the tube to break the interior wall between her bladder and her vagina there must have been rough treatment of some kind as she was moved via the hoist from bed to chair - I couldn't imagine what. When the nurse came she saw at once that it wasn't through her vagina, but through the urethra - just the usual problem that endlessly occurs with the catheter tube - and looked at me as if I was the mad one, thinking it could be the vagina. Of course it was a language issue. The staff are only trained as care workers, not nurses, and there's no anatomy element, I don't suppose. Most of them have English as a second language and some of them are reluctant to use any words beyond 'down there', which is not remotely helpful when dealing with a catheter tube.
Poor ED just lies there as all this goes on around her - and as I break up yet again and sit there, not crying for all I'm worth.
And of course we're off to Glastonbury festival on Sunday. When I say 'we' I mean me, YD and Son, not ED, who didn't want anything to do with festivals even when she could have come. I haven't got anything ready - my clothes are all dirty, as is my bedding (too fat for a sleeping bag - that photo is quite deceptive). I'm meant to have cooked and frozen two lots of chicken and veg soup plus a lentil, veg and chorizo stew to say nothing of finding my book-making materials ready for the workshops. I am still so fucking tired it doesn't bear mentioning.
Oh yes. I still have pleurisy - just a bit, not enough to treat, apparently, but enough to feel when I breathe in fully and enough to show up on the X-ray. So I'm doing Glasto-lite. Taking my knitting and kindle loaded up with lots of books. I might try and write a bit and do some drawing. I have to do at least one one hour workshop in the kids' field every day from Thursday till Sunday, but that may be all I do. If I can't manage it I shall catch the bus to the station and get a train home, leaving YD to bring all the gear. I feel I must be mad to even attempt it, but I'm not ready to stop forever just yet. There's a hard core of people my age running just about every area of the festival - well not all of it - there's all sorts of stuff going on - but I'm not going to be the lone old person there - one of the pleasures is meeting up with all the other stoner-grannies.
Jeez, it's 1.40 am - time for bed. Laters, peoples. Love and hugs and all that xxx
1:48 a.m. - 21.06.19
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