Jan’s story

It’s nice to feel human for a little bit, to be a person and not someone’s Carer

Jan lives in Aylesham. She is a mum of three, Carer for her young adult autistic son who has asthma as well as multiple allergies. She also works as a part-time paid care support worker.

Issues started with my son when he started primary school. I was being called into school regularly, sometimes twice a day. It took 6 long years before he had a diagnosis of autism. He is very clever and was on the gifted register. School was very difficult for him, he was bullied and poorly supported and (in secondary school) he couldn’t cope with the severe anxiety of travelling to school on the bus so I had a long drive four times a day. In the end we were forced to move town, close to his grammar school but away from our friends.

As his Carer, I’m his constant advocate with education and health services to get his needs met, the person who prompts him about everything because his memory and organizational skills are poor and supports him with everyday tasks. There’s a lot of repeated ‘learning by doing’ needed to help him become more independent of me.

I enjoy being a Carer for my son, but it’s been difficult when other people’s children move on and yours doesn’t. It’s not the same as just being his parent. Having a child with a disability is isolating and my well-being has suffered through trying to get what is right for him, once being admitted to a stroke unit due to stress. I have some physical health issues but never get time for appointments, I’ve neglected myself. It’s only recently that I’ve been able to leave him for extended periods or overnight but he suffers with anxiety due to his autism so I can only do this when he is mentally in a good way. During Covid it’s been very difficult. He was very anxious about me bringing Covid into my workplace or our home and struggled with the loss of routine as well as his support worker. He didn’t physically leave the house for 6 months.

I’ve been working part-time as a paid driver for a care home for adults with learning disabilities for a couple of years now, which changed to in-house support with activities and care since lockdown. My manager has been really flexible with my timetable so I can support my son at the times he needs me. I really love the work and financially I needed it so I could afford to run a car to drive him around, as he was too anxious to use public transport. Work has helped me to meet some of my own needs and it’s really improved my morale, but even then, doing it all can sometimes all be a bit too much.

As Carers, everything we do revolves around the needs of the person we care for, but it would be amazing to just feel yourself for a little while. I would love to have even half a day in a spa or time to meet friends for a coffee. I haven’t been to a hairdresser in 6 years!

I never used the term Carer to describe myself, but I came across Carers’ Support East Kent a few years ago, did some training courses and went to some Carer drop-ins. It’s nice to feel human for a little bit, to be a person and not someone’s Carer.