Life as a carer: 'no break, no support, no downtime'

A mum-of-two who has given up her career to look after her children living with autism and long-term medical conditions has shared her experience of life as a carer in Jersey.

The woman, who wishes to remain anonymous, has written about her own experience as part of Carers Week (June 10 - June 16). 

The aim of the awareness week is to highlight the challenges of being an unpaid carer and help those with caring responsibilities recognise that they are themselves a carer and are therefore eligible for support. 

READ MORE: 'Dare To Care' Action Plan To Improve Life For Carers

Here's what one of Jersey's unpaid carers had to say about how her extra responsibilities have impacted her life:

"As a mum of two girls I don't really consider myself to be a carer as I am just being a mum to my girls and doing what I need to get through and ensure they have the best life they can.

"It's only in the last few years that I realised why my two girls were different to others, both girls have Autism, one also has ADHD and the other also has a long term medical condition with we need to manage daily.

"Our life is not one I ever imagined or you can describe in a short paragraph. I can only describe it as difficult most of the time, there is no let up, there is no break, there is no support, there is no downtime, you cannot take your eye off the ball for a second.

"But most of all no-one really understands unless they are in the same position. Quite often we are judged by both professionals and members of the public."

The anonymous Jersey carer says she's had to change her life around her caring responsibilities: 

"I used to have a career that I loved and was very successful at. However, it very quickly became apparent that I couldn't have a full time job and look after my two young girls.

"In order to keep our family together I gave up my career. I have since only been able to work part time, term-time on a zero hours contract.

"However, even that was a challenge, not knowing if your child will make school or what time they will be in school means you need complete flexibility (working from home is not possible).

"There is also the juggling of school meetings, CAMHS meetings, medical appointments, dealing/managing the daily challenges your children face, along with educating yourself on how best to support your child and advocate for them.

"Financially this has had an impact on our family and we have had to adjust our lifestyle accordingly. We don't claim benefits or have any allowances for our girls. We have had to make the decision that only one of us can work for our own mental health."


Dr Margaret Bayes, Chair of Carers Jersey, says more support is needed for islanders in this position: 

"They need to be respected (and) they need respite so they don't get burnt out.

"We sent out a questionnaire once asking people how long they've been caring for. One lady said 'ten years' and I asked her when she'd last got a break and she said '10 years ago'. That's terrible, isn't it? (It) Just makes you cry. 

"Not all carers recognise themselves as carers.. just people looking after their husband or wife. They don't think they're a carer so, they don't avail themselves to the help that's available. 

"We want to change this this Carer's Week."

Dr Bayes also wants to see a law introduced to make life easier for Jersey's unpaid carer community: 

"In England they have Carer's Law, which gives them rights which we don't have to protect carers in Jersey yet, but it is being looked at.

"It will define who is a carer, give them rights to education, to respect, to time off, to respect."


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