Did a quick mental stocktake yesterday of where things are at generally with my life/activities. prompted by having some non carer/disability things happening just now - support for daughter 200 miles away, mothers illness 30 miles away and visiting brother/sister in law 250 miles away. Everybody gets things like this cropping up, problem is for carers, they're on top of a full time (pre)occupation - can't call it a job, that would involve payment.
So on the 'normal' disability agenda this week, my wife spent most of yesterday assisting with sons health/transport - I got to do some non disability things as above. Today we have a meeting, along with other parents, with barristers about fighting the service cuts for our children. Tomorrow we have a regular meeting where Social Services tell us what they're doing - and complex care is on the agenda (and we tell them what is actually happening) - and I need to visit my mum. Thursday we're supposed to go to visit in laws - I'll worry about that later.
It's not the amount of things to do that's the problem - though there is a lot - it's the unpredictability of things. We don't know what the outcomes of these meetings will force onto us, and all the time there's our sons health and care - he's currently back on antibiotics and his gastrostomy is giving problems (poor quality equipment causing inflamation etc. as far as we can ascertain).
I think I'm going to stop stocktaking and go back to crisis management, it's not good for my mental health.
PS Writing this brings into focus for me how much we have to do because of the cuts - it's not just the cuts in service, its the concern around them and the spin off work we have to do as a result that isn't actually care. This I really do resent.
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Just to let you know, this just in from BBC:
ReplyDeletehttp://bbc.in/mA1IF0
The courts have found it unlawful for Birmingham council to cut care to only "substantial" or "critical" people. This is a huge deal as it sets a precedent and sends a very clear message. As my own council has turned me down from any care at all due to not being in the "critical" range, I now maybe have some legal backing for help.
Thanks for flagging this up - I'd been waiting for this decision. The Guardian write up I've seen seems to say that Birmingham have been turned down on at least four grounds, including DDA in principle. I'll try to get a copy of the actual legal judgement as I've a meeting tomorrow about our local council's actions.
ReplyDeleteBest wishes for your own action - I often fell so grateful for being not under a council like Birmingham, must be very difficult. You have my sympathies, and help if I can.