Mary Branscombe (marypcb) wrote,
Mary Branscombe
marypcb

Months not weeks

Today was intensely irritating and, I think, much better news. The clinical care in the hospital is obviously better: mum's on an IV drip and getting a transfusion, though this kept geting put off - it was very hard to take blood and painful for her, and the first batch was mis-labelled somehow so they had to take more for type and match which meant the tranfusion they wanted to start last night hadn't even started when we left today. And the hour to hour care is less than Abbeyfield too; I had to ask five times for a commode instead of a bed pan (which just confuses mum), no-one is coming in to offer drinks, the air mattress took a day to arrive and again hadn't been put in before we left, the dietician never arrived... and the haematologist didn't see her until after the clinic, which meant she'd have been seen earleir going in as an outpatient today. I don't blame the hospital but it was all far slower than the impression we were given of 'bring her in to A&E and we'll see her'.

But. It turns out the big problem at the moment is the dehydration, which is what's caused the vomiting - toxins building up, kidney function reduced by dehydration. The leukemia is 'relapsed' - which means that it's active, which I thought it has been all along - but according to the haematologist the prognosis is 'months rather than weeks'. given that we'd been thinking 'days rather than weeks' it is far better news. there's a part of me that flinches from the idea that she has to go on being horribly ill but hopefully the fluids and transfusion will improve her enough to make all the indignities worth it.

the next issue becomes where she goes next - back to the specialist dementia care where the level of nursing care isn't there, or into nursing or hospice care where I don't know if the understanding of dementia is there. the hospital staff, great as they are - don't have that understanding; I can tell people again and again that she has short term memory issues and problems with process memory but they'll still expect her to remember instructions while they go out of the room and come in again, or do things in a new way like using a bed pan rather than a commode. Will try phoning Macmillen again tomorrow, I couldn't get through today - thanks dr_pete.

so my expectation is it's going to be pretty draining while they get her stabilised and we decide on where is best for her to go, less draining while she's there and more draining next time she has another dip or starts the final decline. lengths, angles and other measures all absent of course, so I shall carry on taking the best care of myself I can as well as the best care of her I can.

We were supposed to go to Beijing in 2 weeks; I'd been assuming we'd have to cancel. I'm still very much in two minds.
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