I hope I don't get flamed for this-we are pretty desperate and need some advice from people who understand.
My DSD has mitochondrial disease which is degenerative and life limiting. Part of her variant is dementia and over the past three months this has progressed to the point that it is all-consuming. Family life with our other children is impossible. We have no support other than a carer we receive direct payments for, for a few hours a week. Both her special school and respite hospice are finding her difficult to manage, are having to limit staff time with her and use constant 1:1 care when they have her.
In order to cope with her at home we need full time one to one care, and two to one at certain times. We need to supervise her constantly, particularly around her toddler sister, and she quickly develops psychotic rages. Social services have increased our hours but by nowhere near enough. At a large TAC meeting yesterday, which our social worker attended, it was obvious that all the professionals involved in her care support our bid. Some have already contacted social services directly; others were angry in the meeting at what we are being expected to do. We are also having another baby in three months. After the meeting, three different people approached us and told us we should take direct action to achieve what we need, in the form of leaving her at the social services office. They were all professionals. We are very reluctant to do this owing to the effect that it would have on her, which we would have to deal with, but has anyone on here done anything similar that has worked? We have already said we are close to the point of asking for residential care full time, which was also supported by people at the meeting. We would like not to do that if we possibly could because of her life limiting illness.