Thursday, June 17, 2010

Fairly quiet on the caring front

Quiet for carers is a relative term. What it really means is no major insurmountable problems ... yet. (I'm tempting fate writing this.)

Had a good 3 day weekend with our son - took him to meet some old friends at the childrens hospice he used as a child. He seemed to recognise the place and people, but as he's photophobic the bright sun meant he went into 'aggressive sleep' mode. (A term coined by his sister, where he actively switches off until the conditions meet with his approval - that day, it was when he went indoors into the relative dark.)

Only one failed piece of equipment at present - split plastic on a couple of suction machine components - should be replaced in a day or so. Shoes/toe splints appointment went OK. Main downside for him at present is hayfever - a major problem, as with his poor swallowing reflex, the chances are 50/50 that the secretions go down the airway instead of the digestive tract, so lots of suction needed and considerable discomfort. To the extent that his oxygen saturation got quite low one evening and he needed extra oxygen for a while. He's got some possible injection treatment tomorrow - I tend not to cope well with that and feel bad as it's him that has to endure it.

It's carers week this week, so we were treated to a free pizza with some other people in similar positions, and then went on to lose the pub quiz fairly spectacularly - afraid we don't do football and the World Cup was a major feature. Went to a Learning Disability Partnership Board meeting to bemoan the fact that the councils adult care plans barely even mention people with complex care needs, and in this climate of cuts it feels very like we're being set up for a fairly severe hacking. I'm just a bit afraid 'over my dead body' could get too close to reality.

The really big news is that our daughter has just been told she's got the job she really, really wanted against some pretty stiff competition. Maybe now she'll find somewhere to live and take all the furniture that's cluttering up our spare room, away. (If you're eavesdropping on this - you know we don't mean it - congratulations!) There is more to life than caring and some of it is really brilliant.


  1. Pleased to hear that you have had a few quiet days. I hope you enjoyed the free pizza and sorry to hear about the pub quiz! Great news for your daughter!
    Give my love to your son.

  2. Will pass it on, thanks. Good to hear from you.