I have an adult daughter with complex needs who is in her 30’s. We have not had any overnight respite care for 4 years, altho her care package states she is entitled to 3 nights a month.
My daughter never wanted to go to respite but as she got older she was more reluctant to go. We continued to send her but the facility has changed management companies overtime and it seems with each new change things did not improve when COVID came along everything was suspended and it was a relief not having to go through the build up of angst and tears as her time to go approached so we were in no hurry to get her back there as we felt the service was sadly lacking……
Of course Social Services, who we never see unless it’s annual review time, were quite happy with this arrangement but 4 years since our last respite I now feel so despondent about our future. My daughter has heavy care needs. I do all her personal care, provide transport to all her activities, she cannot be left on her own, she can not travel independently, I take her on holiday. She needs someone with her all the time to enable her to participate in doing stuff and accessing things in the community. I don’t mind doing these things but there is no break from it. In the last 4 years I’ve had 6 nights away from home on my own which was because my husband cared for her- we never go away together anymore. I just feel useless at being unable to secure more for myself in terms of respite. I feel guilty for wanting to put my need for a break ahead of my daughter’s upset at being away from home for a few nights and I feel envious of others who just have the freedom to do what they like. A well meaning acquaintance told me the other day I could get my food delivered to ‘save’ me time but when you are virtually tied to the house all the time going out shopping is a break in itself.
How can I change things for myself and my family when the services I rely on are so rubbish and the guilt I feel at wanting to escape is paralysing me.