‘This Can’t Be Happening to My Mum’: A Heartfelt Journey Through Dementia’s Devastating Impact

“Mum was huge fun, bubbly, smiling all the time, and a great mother,” recalls a son reflecting on his mother’s life before dementia took hold. Their family’s journey began with subtle signs, like unpeeled new potatoes in her signature stew—something so small, yet so out of character, that it worried them. At just 58, his mother was eventually diagnosed with frontotemporal dementia (FTD), a rare condition that affects people between 45 and 64, told Metro.co.uk.

Despite knowing her father had died of dementia in his 70s, they didn’t initially connect the dots. If their mother suspected anything was wrong, she never let on, laughing off her forgetfulness. The turning point came when her boss contacted the family, expressing concern about her declining work performance. Their mother, once an efficient medical secretary, had begun making mistakes—an alarming change from her usual accuracy.

It took a year to get a diagnosis, a period that the family describes as “horrendous.” Her confusion grew, and she started wandering aimlessly in and out of rooms, even drifting away during shopping trips without explanation. The emotional toll on the family was immense. The son, who lived with his brother in London, juggled his work in television with regular trips to Sheffield to see his mother. “There was no room for tears,” he says, describing the relentless pressure they all faced.

In 2005, the official diagnosis of frontotemporal dementia was confirmed. By then, it was unclear whether their mother fully understood her condition. “I never discussed it with her,” he recalls, reflecting on the helplessness the family felt. Their father, determined to care for her himself, left his job to become her full-time caregiver. “Mum was the one diagnosed, but the effect on our whole family was devastating,” he explains, as the reality of the illness took its toll.

Friends began to drift away, uncertain of how to handle the situation. Despite the challenges, there were moments of light. Music, particularly Yellow Submarine by The Beatles, brought smiles to their mother’s face, even as her speech and mobility declined.

After years of struggle, their mother passed away in September 2010, aged just 64. “Walking into the house that morning with Mum gone felt like knowing two different people—Mum before dementia, and Mum with dementia,” he shares. Now, as a father himself, he keeps his mother’s memory alive by sharing stories with his young daughter about the meals her grandmother used to make.

Since his mother’s death, he has worked tirelessly with the Alzheimer’s Society, raising thousands of pounds for dementia research through marathons, treks, and fundraising events. “Dementia’s devastating impact is enormous—it’s the UK’s biggest killer—but too often the realities of the condition remain hidden,” he says. His mission now is to ensure that more families are supported and aware of the devastating toll dementia can take, not just on individuals, but on entire families.