Our family adapted to Uncle Paul’s life. It came naturally. – #100days100stories

Hannah Croft works at a Scope shop in Liverpool. She feels proud to support Scope as she remembers the support her family provided to her Uncle Paul. Read Hannah’s story in the next of our 100 days 100 stories campaign

Hannah and Uncle Paul

My name is Hannah and I work as an Assistant Store Manager in a Scope shop in Liverpool. I came across the job by chance. My Uncle Paul needed a lot of care and support following an illness and I knew that I would love my job as I would be contributing to the work of Scope which is all about supporting disabled people and their families.

My Uncle Paul was one of five children, with four sisters, including my mum Ann. At 13 Paul developed a brain tumour. The radio therapy he received affected his immune system and he contracted meningitis. This left him with neurological damage which meant he used a wheelchair and needed full-time care.

A family issue

The whole family adapted to fit around Uncle Paul’s life, it came naturally. At Christmas, birthdays and parties the family all went to my Nan’s home to be with Paul. My grandparents shift patterns worked around looking after Paul. My Aunt Margaret missed her last two years of school in order to help too. Later in life, Paul had a stroke. This left him bed bound and virtually unable to move. Margaret never left home, never got married and her job was to help care for Paul. She gave up most of her life to help her brother. After my granddad died the work for my Nan and Margaret in caring for Paul increased. They got no help.Though things were hard, Paul was pretty stable and most of my memories are good ones. My Nan and Margaret got no respite. Even though other family members offered help to give them a break, they were always thinking about him.

I remember as a small child sitting on Paul’s knee and colouring in with him. I would use his crayons and he would tell me where to colour. When I got older I learned to help and support Paul. I enjoyed this as I felt grown up and important to him. He lost the ability to speak and the only words I remember are ‘yes’ and ‘no’ and sometimes random swear words. This made us laugh. However explaining this to visitors was a different thing!

The care my family gave Paul was part of my life right from the beginning. He was treated with so much love and dignity. It has not only shaped the person I am but also every other member of my family. We are strong and stick together.

A better future

I would like to see disabled people and their families given more support. Nobody told my family how to care for Paul, they just had to learn. Nobody told us about support which could have made his life better.

Paul passed away in 2008. He was 54 years old. When he first became ill, my family were told he wouldn’t live past his teens.

Perhaps if we had known of Scope then, things could have been easier. I feel proud of my Uncle Paul and of my family and I am proud to work for an organisation that supports other disabled people and their families the way we would have liked.

Would you like to make a difference by sharing your story as part of our 100 days, 100 stories campaign? Please contact us at stories@scope.org.uk if you’d like to get involved.