I had an assessment by the Adult Social Care social worker last week. Despite my reservations, it seems to have been the right thing to do. We have been allocated a further eight hours per week funding for respite care and help with the house. We were both so relieved that B cried. We can use some of it for a carer to be with N so that we can do things with L; or for a carer to take me and L out (in lieu of me being unable to drive) or for someone to be with both children whilst B and I have a couple of hours to ourselves. It has come at a really good time, as L is clearly desperately needing one to one time.
In the meantime, the Continuing Health Care Panel meet on Tuesday and, please, please, please, with luck and, oooh, maybe, a modicum of organisation and even, god forbid, competence, Children's Social Care might have got their act together to get our case looked at for some overnight respite.
This is now becoming reasonably urgent as N's breathing is not what it could be. She had a Sleep Study last week, which picked up low oxygen levels a few times in the night and a general rise in CO2 as the night went on. This would account for the continuous waking. We have very mixed feelings about it. On the one hand, it's rubbish. She is being referred to Bristol to the respiratory people again, who may want further tests. On the other hand, it's bloody nice to be validated - we've both felt that the social work people have been implying that we are laying it on a bit thick with the amount she wakes up in the night - it's only really the hospice people, who have her overnight too, who have made supportive noises.
It's all a mess. The whole bloody thing is a mess. In addition, one of N's carers is leaving after Christmas. Our sparkling new Live In Carer (tm) is picking up the two nights a month that she was doing; but if the CHC Panel goes to plan on Tuesday, that still leaves us looking for people to fill in another six nights a month. I want to have a small team of people that N knows well who can provide enough flexibility to cover for illness and holidays between them. I think we are looking for three or four people - and now we only have two, one of whom can't do nights at all.
Plus, the rate we are getting from the council to pay carers is derisory - a lot of families are adding an additonal four pounds per hour to the rate themselves in order to ensure continuity of care. We might be able to use the help we get from the wonderful Team Nenna to do this - but currently that is still paying for the two overnights a month, because of the fuck ups getting the overnight care from the CHC people in place.
Last week I had three afternoons where I did nothing but lie in bed and fit and doze. L is being very difficult and we are finding it hard to work out what is 'normal' eight-year-old boundary pushing behaviour and what is a product of having a poorly sister and incapacitated mother. School are being brilliant and extremely supportive and we have lots of things in place. But keeping those strong boundaries in place for him all the time is exhausting for both of us.
This all sounds really bloody negative when I write it out. We are not moping around sobbing winsomely all the time, I promise, although I sometimes think that I do nothing but whine here any more. I look back at my earlier blog posts where I actually tried to make people laugh with my writing and I don't recognise that woman at all.
I *am* thankful for our life. I am thankful for my beautiful children and my incredible circle of friends and family (of choice and blood). I am thankful for where we live. I am thankful for the professionals that help us. I am thankful that I can read and look at pictures and drama and the countryside and see beauty in all those things.
It is just very hard to remember that sometimes.