Wednesday, April 13, 2011

Saving energy

Chest infections clearing - hopefully, after some problems. Residual bits causing discomfort but not too much distress. Priorities now are to make sure his chest stays clear, he's kept as comfortable as we can and he gradually gets back to 'normal' (whatever that is.) doing things.

Last few weeks have been a fairly continuous round of physio, antibiotics and worry. Some of the time he's been with us - so we got to worry at first hand, but doing his care at least kept us occupied and feeling we were doing something positive. The hardest parts were when he weasn't here with us. Someone else was doing the care. We stayed with him as much as possible but had to come home at some points to eat and sleep. Being on the end of a telephone isn't the same and we ended up calling and texting for updates at what must have seemed to his nurses, unnecessarily frequent intervals. It isn't that we don't trust them, it's just that he's our son, and when you can't sleep at three in the morning, a bit of reassurance is more effective than any amount of temazipam.

Back in the looking glass world of service cuts, our council has just withdrawn funding from all the local CVS projects to save money, so all the carers initiatives (support for young carers, elderly carers, carers networks, learning disability advocacy, communication help for non verbal people, volunteers etc.) will stop in June as CVS is forced to close down. I thought carers and things like CVS were The Big Society -apparently not. The effects havn't hit us yet - we'll cope with the fall out when it does.

Right now I'm just tired but hopeful that his health picks up. Campigning will have to wait until normal (or abnormally high) energy levels are restored.

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