annanotbob2's Diaryland Diary



Still no assessment, due to a series of cock-ups, too tedious and coincidental to bear repeating, but late this Friday afternoon - ach it's too complicated - it will happen, maybe tomorrow as they do work weekends.

My poor daughter has had quite a few more seizures, some of them when I've been with her - oh yes, never think things can't get any worse, they always fucking can and often do. But today the MS nurse, back from her holidays, says that actually many people with MS have seizures, randomly, this being MS, which is a fucker of a disease, not playing by any rules - some have a few at the beginning, some have them all through, some have bursts of them, years apart, and now here's ED having some for the first time twenty years into the disease. So she may not be at the end, but she may be, so we need the assessment.

At this meeting I discover that the care home no longer say that they want to keep her to the end, but in fact say they cannot manage having her dying slowly in amongst them, which pleases me because I never believed them when they said they could. Apparently 60% of the staff say they don't feel confident about meeting ED's needs, especially if it's going to involve active, scary stuff like seizures, rather than quietly fading away. I've not wanted it to be there because a)  the room is small with only one chair - I can get chairs from the dining room but they're needed for meal times and anyway it all gets too crowded. Today there was me, Son and Sister-in-Law and we had to get up and out of the way, moving the chairs etc every time a member of staff came to give meds or flushes or whatever, which is often. The rooms at the hospice are much bigger, with a sofa-bed b) The staff came to work in a care home, not a nursing home - one of them happens to be a partially trained nurse, but the rest have no medical training at all so they feel anxious. Some of the newer ones are very young - 18 and 19 - and are scared of the emotion of all this and I'm glad they've said so. The staff at the hospice have all chosen to and have been trained to work with the dying and their families - when I felt overwhelmed there I didn't feel I had to hide it c) The other residents, who all have profound learning difficulties but are not made of stone and pick up vibes and are there, in your face, unavoidable. I hate the thought of them being upset. And they make sounds - man, the noise there today was unconscionable d) the hospice is on the edge of town, with big gardens and an easy walk up into the hills. The care home is in the centre of town, with a small courtyard and nowhere to cry in private let alone sob. Yesterday when the therapist came to give ED some reflexology I went for a walk and stepped out of the home directly into British-cheap-holiday-land - loads of fucking people, all laughing and pissed and shouting and I nearly exploded with the awfulness of it all. I ended up standing facing the wall of a shut down shop, crying and crying as I couldn't keep it in and there was nowhere to go with it. I was ignored by everyone - they probably assumed I was some piss-head - but it was terrible and made me feel it would be even worse if we were here right through to the end.

But maybe this isn't the end and if it is or when it is, maybe we can do it at the hospice.

There's been other stuff but I can't remember what.

If you want to say something but have no words, do feel free to just put xxx - there are no fucking words, I know that.

12:40 a.m. - 31.08.19


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