Janice's Story 

Janice is one of several unpaid carers in East Sussex to take part in our inter-generational Carers’ Words, Carers’ Lives heritage project. Janice took part in a short film in which she tells her story and talks about an object that has special meaning to her.

“My name’s Janice, I care for my son James who is 33 and has a unique chromosome abnormality.”

What do you think about the caring role and handling change?

I feel sometimes I’m restricted in what I can do in my life, I’m a carer before I’m anything else, my life is geared around the school day still after thirty years. But I love spending time with James, I wouldn’t have it any other way. I don’t see disability, I see a person, strong and funny, he doesn’t speak so when he laughs, this laugh is incredible. He’s so loving, he’s taught us to be patient. My husband’s great, my daughter’s great, we’re a strong unit, that’s what sustains all of us. We tick along, then something will happen major, and I think ‘coping strategies.’ As a carer, I’m ever inventing coping strategies. Everything changes and moves with time as life does.

What is your involvement with Care for the Carers?

A fabulous organisation, I’ve been involved with them as a volunteer for over 20 years. I’ve been on committees, in groups, I used to speak about carers issues in public, getting the message out there. I’ve been to the Forums and met carers through that – every carer has different concerns, every carer is unique in what they have to deal with the every day. 

Why does creative writing mean a lot to you?

I attended the Care for the Carers creative writing course, it was the perfect time. Writing releases something in you,it’s an amazing medium. There are so many things I want to get down on paper because if they’re not, they’re lost. I want to leave a legacy of something when I die.

Can you talk about the object precious to you?

The creative writing journal. My daughter bought me a journal to write in about my life, about family, loss, grief, about what makes me who I am. And now I’d like to write about my son, this amazing man who is inspirational. I don’t think too far ahead in terms of how long is James going to live, how long can I care for him. I don’t think too far ahead other than to be the best I can be for people I love, and to write the book.

“Every carer has a different story to tell.”