“"It clicked," Caroline says. "It was the right information at the right time, and the rest is history."
Caroline, 54, lives and works in Lincolnshire. She is a full-time carer for her 26-year old son, David, who sustained a brain injury due to a severe brain infection when he was seven years old.
When David was born, Caroline noticed early on that he had developmental delays. With extra support at school, she managed to balance caring for him while working a part-time job. “I thought I had everything under control,” Caroline says, “but I didn’t know what was coming.”
David’s unexpected decline in health at the age of seven led to an extended stay in intensive care. This resulted in Caroline leaving her job at a local school to care for him full-time, the impact of which hit hard. “Losing my job was like losing my identity,” she recalls. “I felt like everything had been ripped away.”
Despite David recovering from his infection, his condition deteriorated over time, leaving him with severe cognitive and physical challenges. He became aggressive and had uncontrolled seizures, making it impossible for him to attend school regularly. Caroline found herself juggling care, work, and a relationship breakdown, which left her temporarily homeless. “It all happened so fast. I was just trying to survive,” she admits. Fortunately, a supportive landlady offered her a place to stay, providing Caroline with some stability. Still, she faced constant uncertainty about her work situation.
“I didn’t want anyone to know how much I needed time off. I was terrified of losing another job,” she says.
Despite these challenges, Caroline continued working part-time in care and community roles, always worrying about job security. “There was never time for me,” she says. “I was just keeping my head above water.” But as David grew older, his needs remained constant. He still couldn’t be left alone, couldn’t cook, and he struggled with daily tasks. “I am his lifeline,” Caroline explains. “I felt like I was always on call, but there wasn’t room for my own needs.”
Caroline first learned about carers' services through a parent carers' forum but didn’t see herself as a carer. "I was working, so I just thought I was a parent, not someone who needed extra support." Years later, she saw an advert for Carers First at her GP surgery.
"It clicked," she says. "It was the right information at the right time, and the rest is history."
After being introduced to Carers First and finding out about her rights as a working carer, Caroline felt comfortable asking for support at work. “For years, I didn’t want to be seen as unreliable,” she admits. “But eventually, I realised I had to speak up.” After conversations with a support worker at Carers First, Caroline applied for a “carers passport” - a support tool designed to help employees who are carers to formalise a way to access workplace adjustments and requested flexible working hours to better manage balancing work with caring for David.
Fortunately, her employer was understanding and agreed to a trial arrangement. This allowed her to work nine days over ten, giving her every other Monday off. At the beginning of November this year, for the first time in years, Caroline had a full day to spend with David. “It felt like a gift,” she says. “We went for walks, talked about what was on his mind. I was finally able to just be with him, without the pressure of work or chores hanging over me.”
Caroline recognises the importance of this time: “It’s not just about taking a break. It’s about being able to connect with David in a way that I hadn’t been able to before.” Caroline’s flexible schedule has made a world of difference in her life.
“It’s not perfect, but it’s progress,” she says. “I finally feel like I’m not just surviving - I’m living again.”
The change has given her hope, not just for herself but for David as well. Becoming aware of her rights as a carer has made a huge difference to Caroline’s life. She is aware that balance is key. “Carers need support, and we need to take care of ourselves too,” she says. “The small moments matter most, and I’m learning to make space for them.”
*Names have been changed to protect privacy
Online Help and Advice
Visit our online support section where we have provided advice and guidance on a range of relevant topics to help you in your caring role.