Caroline has been the heart and soul of her daughter Charlotte’s life since the day she was born. Charlotte, now 14, lives with Rett Syndrome and Epilepsy, and Caroline has been her primary carer every step of the way. For National Carer’s Week, Caroline shared with us her journey as a mother and primary carer – the relentless demands, the sacrifices, and the unshakable love that define her life.

Becoming Charlotte’s Primary Carer

From Charlotte’s birth, Caroline has been her sole carer, managing everything from health routines to emotional support. “I was very slow to take on Support Workers, even after encouragement from our Local Area Coordinator,” she says. “We started with a Support Worker coming for a few hours every Saturday afternoon. They would go for a walk with Charlotte, help her cuddle her beloved Elmo and Dora teddies, and just give her some quiet moments of joy.”

At that time, Caroline would use those precious few hours to spend time with her eldest child, who was five years old at the time. This initial step into accepting support opened the door for Caroline to focus not only on Charlotte’s needs but also on balancing her role as a mother to both her children.

A 24/7 Job

Charlotte’s care routine is intense and deeply involved, requiring 24/7 monitoring and support. Caroline explains, “If Charlotte falls asleep, we still have her video-monitored through the night to assist with nappy changes or to reposition her, as she moves a lot in her sleep.”

Because of Charlotte’s Rett Syndrome and drop seizures, safety is always a concern. Caroline and her team of Support Workers must constantly assist her, helping her walk, sit, and communicate. Everyone in the room with Charlotte “needs to act as an assistant physio, OT, and speech therapist” Caroline says. This level of care demands incredible energy, patience, and vigilance.

The Challenges and Rewards of Unpaid Care

Caring for Charlotte has shaped Caroline’s life in profound ways. “It’s forced me to prioritise my energy, fitness, and mental health,” she says. Caroline has developed small but essential routines to maintain her own wellbeing, such as rising early for some “me time” before the day’s demands begin. “A growing acceptance that I cannot do it all perfectly 24/7” has been key to her resilience.

Caroline’s role as Charlotte’s primary carer has impacted many areas of her life, including her career and relationships. “I’ve tried to work, but with so many off days and nights and half school days for Charlotte, I lost a well-loved job I had for a decade,” she shares. Like many skilled special needs mums, Caroline dreams of returning to the workforce, even part-time, and hopes more employers will open their doors to this “untapped skilled workforce.”

However, as a single mother and primary carer, Caroline feels there’s still more that could be done to support primary carers financially. “I qualify for a single carer’s pension, but I think all primary carers should receive more than just the allowance,” she notes, highlighting the financial strain often faced by unpaid carers.

Despite the challenges, Caroline finds strength in her relationships with family and close friends, particularly those who understand the unique demands of her life. She’s also found joy in small gestures of kindness, like when her neighbours drop off fresh fish or potatoes they’ve harvested. “Acts of generosity like that mean so much,” she says.

Words of Wisdom for Other Carers

When asked what advice she would give to other parents starting out on their caring journey, Caroline’s message is one of compassion. “Be more compassionate to yourself. Know what fills your cup and plan to do it as many times as you can every week,” she says. “Find drama-free family and friends who love you and your family and make time for joy in the little things —sharing a smile, being outside in the sun, or just being present.”

Caroline’s story highlights the often invisible but profound impact that unpaid carers have on the lives of those they care for. This National Carer’s Week, we celebrate carers like Caroline, whose love, resilience, and dedication are the foundation of their family’s well-being.