I’m a bit slow off the mark looking at the dates on here but it is so great to read the views of other siblings. There are so many familiar emotions and situations described in your postings.
I’m a little bit further down the road than many of you. I’ll be 50 this year, my brother 46, and for the last four years I have had complete responsibility for him.
Like many of you J and I grew up at home together, just a normal family but not quite. J has Down’s and is quite able physically as well as able to speak and read and write. He was fortunate enough to benefit from a fabulous special school and the family benefitted from a network of other families ‘like ours’. I guess the differences didn’t really start to register until I started to do things he never would; pass exams, drive, live independently. Although there were some benefits for J in the shape of opportunities to do things without our parents.
J lived at home until Dad (on his own by then) was too ill to take care of him. We had to take finding a residential setting for him into our own hands. By the time Dad died a few years afterwards J became unhappy there. Then I realised how much I was on my own! J is my only sibling, our Mum has dementia and Dad has died.
I am J’s appointee and he was able to give me power of attorney. I helped him to move within the supported living service he was at to a place which suited him much better. My husband and kids are great and very supportive but it has taken a great deal of time and I feel I am totally on my own.
Now J has dementia. I have every confidence in his support workers and the charity staff providing his care but the future is once again very uncertain.
J benefitted his whole life from being born into what my Dad described as a ‘window of enlightenment’ post-institutionalisation and when there was funding! In the last four years we have had to apply for ESA and Pip and push the local authority which funds him. Now that authority is assessing the extent to which he can use his benifits to contribute to his own care. Will it ever end?
I love spending time with my brother but I hate it when that time is taken up with ‘working’ for him rather than being a sister. On the flip side I worry about what will happen when I can’t watch out for him.