Local carer tells her story for Carers Week

Jo’s life as an unpaid carer began when her dad suddenly developed an undiagnosed degenerative brain condition, when she was 17 years old. She supported her mum with her dad’s care and became a co-parent for her younger sister.

After a year she went to university.

“I felt that it would be more helpful to stay home, but it was important to the family that we felt that life kept going," she said.

In her second year at uni her dad sadly passed away. By now her mum’s health had deteriorated because of “what had been an incredibly tough two years.” She was now helping her mum as she recovered her health and was supporting her sister as she went from school to university.

“I think where it had the most noticeable impact was when I was choosing my first job. My peers were going into graduate schemes... It really brought home to me how different my situation was from my peers.

"When I was choosing jobs, I chose one that was less demanding.”

This gave her space for her mum and her sister but meant that she was unable to pursue the career she had hoped for.

In her twenties, Jo was juggling trying to build a career, with her caring role and dealing with post viral fatigue, which meant she had a lot less energy to manage everything... “you still wouldn't have known I was a carer because it was something that wasn't known outside of our relationship.

Mum didn't want me to be having to do any care or support, so part of the way I could support her was by doing it as invisibly as possible and certainly never talking about it. It was just something I got on with, so people just got used to the fact that I wasn't around.”

This is only part of Jo’s story. Jo had started to lose her sight at 28, so she and her mum have cared for each other over more than twenty years. They have gone through a lot together, and Jo’s life has been greatly affected. Her Mum had her first stroke just as Jo was moving to Brighton to pursue her PhD.

“Caring has completely shaped my entire adult life… trying to build a life whilst also having those caring responsibilities is challenging.”

Jo has had support from Care for the Carers since 2023.

“Your carers organisations are the ones who are going to make you feel like a carer, link you into the support that's available and connect you with other carers… I'm a member of an online carers group, because for the last 18 months I haven't been able to leave the house. That friendship, recognition and mutual support that you get from other carers is so vital”.

This Carers Week (June 10 to 16), local charity Care for the Carers, and carers like Jo, are raising awareness of the thousands of unpaid carers across East Sussex and encourage carers to reach out for support.

Jennifer Twist, Chief Executive at Care for the Carers, says: “There are people on every street who like Jo are in substantial caring roles, through to those providing less intensive help. Caring comes in many forms and can take its toll on carers’ own financial position, health and wellbeing. If you look after someone who couldn’t manage without your help, support is available to you.

"This Carers Week especially, we’re encouraging anyone who thinks they might be in a caring role to get in touch with us. Care for the Carers is here as your ‘one stop shop’ for support. No one should be left to care alone.

"Call us on 01323 738390 or visit www.cftc.org.uk “