John & Kathy's Story

John, 57, lives with multiple long-term conditions, including diabetes, high blood pressure, and arthritis. He manages these while also caring for his wife, Kathy, who has early-onset dementia, and her elderly mother, who lives nearby. John has become a self-taught expert in navigating the health and care system - filling out forms, chasing appointments, managing medications, and coordinating services across multiple providers. He’s persistent, practical, and deeply committed to his family, but the burden is immense.

John's experience of care has often been frustrating. He feels that health professionals don’t listen, and that he constantly has to prove himself as a competent carer. He believes that people living with conditions often understand their needs better than professionals do. He’s not afraid to push back, challenge decisions, or escalate concerns when necessary. Over time, this has worn him down. He’s exhausted, but doesn’t feel he can stop as there’s no one else to step in.

Kathy, 54, was once a confident and independent woman who worked in education. Since her dementia diagnosis, she’s experienced moments of deep distress and confusion, especially when routines change or support is inconsistent. John has learned how to respond with patience and calm, but managing her care alongside his own conditions is emotionally and physically draining. It puts a big strain on their relationship. Respite options are limited, and he worries about what will happen if his own health worsens.

John and Kathy have two dogs they love dearly. The dogs are a source of comfort and companionship, but John often feels guilty when he doesn’t have the energy to take them for proper walks. It’s a small but constant reminder of how stretched he is.

John finds small victories in moments of connection with Kathy, in staying one step ahead of the system, and in helping others in online forums who are on similar journeys. But he’s clear: caring shouldn’t require this level of personal sacrifice. The system needs to recognise carers not just as extensions of the patient, but as people with their own health, needs, and limits.