Jackie Harrison: my thoughts on being a sibling carer
Jackie has looked after her brother Mark since he was 12 years old. Over the past ten years Mark has had to face Huntington’s disease, while Jackie has experienced all the challenges of being a sibling carer.
Jackie lives in Brighouse, West Yorkshire with Mark and her partner.
My situation is perhaps slightly unusual. I have cared for my brother Mark from the age of 18, when I became his guardian after the death of our Nana (pictured with my mum in Blackpool). Our mum died from Huntington’s disease when I was 12 and he was six, and we did not have a father who would support us.
If our lives had been ‘ordinary’ I probably would have finished my A levels and gone to university. I wanted to be a teacher, like my mum and Nana, but this wasn’t an option then as I had a house to run and a child to look after. There was little support for either of us. I got a job and spent the early years doing low paid, low-skilled work, but did manage to keep a roof over our heads while my brother passed his GCSE exams and A levels.
When Mark went to university I was able to work part time and study. He studied English at the University of Leeds, followed by a history degree. I did an English degree at the University of Huddersfield followed by a PGCE and some part time teaching.
Mark’s graduation was one of my happiest memories. I felt very proud of what he had achieved despite losing our mum at such a young age. But then for the third generation we had to face the monster that is Huntington’s disease as Mark started showing signs.
With Huntington’s disease you know what’s coming. I remember stories of my grandfather’s struggle, then lived to watch the disease take my mother, my uncle and now here we go again with my brother. Huntington’s is genetic, so I also have to deal with my own 50 per cent risk of developing the disease.
As a sibling carer, you are in a relationship that you didn’t choose. You are not brought together by common interests like punk music or disco dancing, but simply because you have the same parents. It is not something you choose like a spouse or a child, but it is the longest relationship many of us will have.
Sometimes we argue like brothers and sisters do, but we still make each other laugh. I take each day at a time and cherish these moments, even though it isn’t always easy.
I struggle to keep fighting some days, but I know I have to. I had to fight my local authority to get seven hours of support in direct payments. I was not allowed any more as I live in the same house as my brother. Yet if I were to stop living with him he would have to go into specialist residential care at a cost of several thousand pounds a month.
Years of caring mean I don’t have the pension fund that a solid career would have given me. I have worked for most of my life to support us but it has not been well paid and has sometimes been part time. Now I am a full time carer receiving Carer’s Allowance for support.
I’ve been able to complete a masters degree alongside caring for Mark. My research focused on the launch of a parliamentary group on Huntington’s disease called ‘Hidden No More’. I spoke to people who attended the launch about their memories and motivations, and explored if and why people felt that Huntington’s had been hidden.
It’s hard to think about the life my brother would have had without Huntington’s. I feel regret for the career I know he would have had, the family he may have had and the opportunities there would have been, which have now been lost to him. I feel guilty that his life has been disrupted and he has never had the support that a young person should have had.