HEALTH – Huntington’s disease Jackie Harrison

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.


Jackies nana and mum

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 graduation for web

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.

FrankMarkMaynard for web

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.

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