I have a 30 year old son with learning disabilities and autism
He lives at home with my husband and I, who has recently been diagnosed with cancer. I am a lifelong carer.
My son Jack requires full time supervision. He can’t travel independently. He requires supervision with his personal care at home and when out in the community. He is also incontinent at night and sometimes he can have accidents during the day.
I have to do a great deal to support him day to day. Preparing all his meals, stripping the bed and making it each day plus his washing. Finding ways to manage his obsessive behaviours and rituals which are constant is particularly tough.
I spend a lot of time organising his outings and arranging get-togethers with other young adults with learning disabilities, which I have to accompany him on. Mostly to ensure his safety and that of others, given his vulnerability.
What I find most challenging
I have my own health problems including diabetes and fibromyalgia and managing this alongside my caring role for Jack is really hard. I get tired very quickly, and there is very little respite. Over the last two years especially, I have really struggled with coping with his daily rituals.
Help from Unpaid Carers Support
Unpaid Carers Support is a much needed charity ensuring carers have a listening ear, and they act as advocates for those voices that remain unheard in broader society.
They have provided me with wonderful advice and support too. They’re really knowledgeable on how the lives of carers can be improved and what help is available for me as a carer.