Jane’s Story

Jane* has been a carer for her daughter for 14 years, who was diagnosed with a brain tumour just before her first birthday. Here is her story.

“Initially, I didn’t realise I was a carer, I thought I was just doing what any parent would do. But as other children ran and played, my daughter remained like a baby, and I began to understand my role was different to other parents.

I gave up my job for five years to care for her full-time through treatment and surgery. I’ve since returned to work, but only part-time and in a less demanding role, so that I can continue to support her. My career took a back seat, and that’s something I’ve had to come to terms with.

A typical day is exhausting. Nights are broken by seizures and pain, and I’m constantly administering medication. The sleep deprivation makes everything harder! Mornings are a blur of feeding, washing, and preparing for hospital appointments, there’s usually at least one a week.

My son has grown up alongside this. He’s a young carer, and while I worry about the weight he carries, I’m incredibly proud of him. He’s empathetic, and instinctively knows when I need quiet, and he helps in small but powerful ways – fetching medication or sitting with his sister. I’m saddened he’s had to grow up too fast, but he has become someone special because of it.

Emotionally, this role is tough. I feel sadness for the childhood my daughter missed, and grief for the life we imagined. It’s isolating and exhausting.

I had heard of Carers in Hertfordshire, but only reached out after a friend recommended the mentoring service. I’m so glad I did. Speaking to an Advisor helped me realise I deserved time for myself. Mentoring gave me a lifeline — a space to talk, reflect, and feel heard.

I’ve also used the Carers’ Passport for discounts at the hospital and attended some of your courses and workshops, including a Sound Bath session that was unexpectedly beautiful. I left feeling lighter and like I’d been given permission to breathe again.

Carers in Hertfordshire gives me reassurance, just knowing you are there is powerful.

My advice to other carers? Reach out. Even an hour to go walking or to talk to someone can lift the weight. You deserve that time.”

*We have changed the name at the carer’s request to protect their identity.