Heavy week. Too many meetings with council about cuts (all day meetings - we don't have that sort of time), also care assessment meeting that didn't finish until 6:30 plus looking after him ourselves without nurse. It's hard work looking after him - meds, lifting, suction etc. but it has its rewards when he sits there on the sofa with you chilled out and just resting. There can't be many 28 year olds who'll tolerate an evening cuddle from parents watching tele.
Meetings about cuts or assessments don't have that upside. The stress and anxiety levels just get driven up and seem to hover at an uncomfortable edgy level for days. Sleeping, even without him here, gets to be something you celebrate and only comes when you're so exhausted you fall off doing something. Have to do something to stop the adrenalized thoughts going round and round in circles. Even resorted to low volume, watching channel Dave until dozed off last night.
I'll almost be happier once these cuts hit properly. At least we'll know exactly how hard things are going to be and can get on with living. Fighting them, when you know you'll almost certainly lose is really wearing. It's not like it'll stop when we're beaten, it just means life will be even harder than it is now. These cuts are real - we now know fairly well what's going to disappear - most of his transport, almost certainly some day care, probably some of his 'ancillary' services, and that's with us battling to keep them. The ones I really feel for are those with moderate learning disabilities. Our sons disability is obvious and we'll find ways to make sure his quality of life doesn't suffer, somehow - at someone's expense, if not our own. They are in line for effectively losing all their support, they won't understand what's happening or why and many of them will be left with no-one to fight their corner.
I'm not going to feel guilty that our sons service is stopping them and others getting a service - we're not responsible for these cuts. The politicians and senior council officials are. I will blame them. They've got this wrong, and asking us to choose who else to cut (which they have) so we can keep our service is wrong.
And yes, I am bitter.