The life of a young adult carer

Sam cares for his younger brother, Ben. Sam is now in his final year at college and has been living away from home. His caring role has diminished while at college, but he will be returning home in the summer and will be on standby to resume caring for his brother, alongside his parents.

 

Sam has been a carer for his 17-year-old brother Ben for as long as he can remember. Ben has autism, complex learning difficulties and epilepsy. Although his parents have tried to shield him to try to give Sam as normal a life as possible, he feels like he is invisible and has had to grow up very quickly.

“School was a difficult time, trying to do homework and trying to study and care for Ben at the same time. My brother’s seizures became worse over lockdown, he was having two seizures every week. As a young guy, I was trying to get on with my life and felt helpless as I could not do anything to help. I was trying to study for exams and there was constant background noise. Cycling was an escape for me and still is.

“My parents were trying to give me a normal live, trying to support me and they were able to shield me a lot. It still has an effect even now. At a college open day, I was the only person there without my parents which is sad. I feel like an invisible child.

“One night I was studying for my highers and my dad was shouting for help with my brother who was having seizure. Ben is 6ft tall and over 70 kg. Dad was holding him, and my brother’s face was blue. I’ve had to work through that experience. I am first aid trained able to deal with the seizures in a more controlled way. I would go to school next day and compartmentalise it. In the last few years, I have been able to learn coping mechanisms”.

“Over the summer I will be at home and back to family life and caring responsibilities. I have grown up very quickly. In school and college, I know I was more mature than anyone else. I am 19 and sound like I am 25 years old.  As a young carer, you have to grow up very quickly and jump to it. You are given a lot of responsibilities as a child. I have had a lot of independence as child and forced to grow up quickly. This cannot be overstated. You are always branded as very mature. It’s weird for me. I do not relate to younger groups and don’t relate to older groups. I am learning to live with this, however I am very well prepared in problem solving!”

“Carers Link has provided a lot of respite for me. I cannot go on family breaks as it is too stressful to cope with. The charity has given me time away and provided a college reference and a carers statement.

Support from Carers Link was there from the start. When I was very young, I didn’t understand what support meant and didn’t know what a carer was. I thought I was helping. People don’t know they’re a carer. It’s vital to get information early so that you have support, you deserve as much support as you need”.