Jonathan’s Story

When Jonathan Kyriacou’s mother, Michelle, began to struggle to find words in her early fifties, no one in the family imagined what lay ahead. “At first, we thought she was just tired from all her night shifts,” Jonathan recalls. “She was 52, healthy, and still working as a labour and delivery nurse. Dementia wasn’t even on our radar.”

When the diagnosis of frontotemporal degeneration arrived, it came as a shock. “We’d heard of Alzheimer’s,” he says, “but not this. It was a whole different reality.” 

Upon her diagnosis, Michelle retired from the work she loved. Her family tried to adapt, balancing care with the demands of daily life. Jonathan was in university; his siblings were also still in school. His father continued to work full-time. “There was no one who could stay home all day,” Jonathan explains. “We had to find a way to make it work.”

The Alzheimer Society became a critical resource. “One day I came home and saw all these pamphlets on the kitchen table,” Jonathan remembers. “My dad had been searching for help, an organization that understood what we were going through, and that could offer some real support.” Through the Society, the family connected with personal support workers who came several times a week, offering both care for Michelle and moments of respite for her husband. “Even just a few hours of help made such a difference.”

Caring for someone with young-onset dementia presented unique challenges. “Physically, my mom was still strong and capable. But mentally, she was slipping away,” Jonathan says. “She’d sometimes try to leave the house on her own which was terrifying. You had to be constantly alert.” 

Despite the challenges they were facing, Michelle’s family worked to preserve the sense of joy and togetherness she had always brought to their lives, especially during the holidays. “Christmas was her favourite time of year,” Jonathan smiles. “She’d have the tree up by December 1st, the presents wrapped, the whole house decorated. As the disease progressed and it became clear she couldn’t keep doing it herself, we took over. We’d all pitch in to decorate the house and ensure gifts were under the tree because we knew she would want that.” 

Michelle passed away in December 2021, just shy of her 60th birthday. But her love and warmth live on in the traditions her family continues to honour. “It’s never the same without her,” Jonathan says. “But keeping those traditions alive is one way of keeping her close.”

Today, Jonathan serves on the board of the Alzheimer Society of Toronto, hoping to help other families facing the same challenges his did. “There are so many families like ours who are still working, and still raising younger children or with children going through school, while at the same time trying to care for someone who’s too young for this disease. I want them to know they’re not alone. The support we got made all the difference.” 

His story is a reminder that behind every diagnosis is a family doing their best to be in the moment with courage, love, and hope that no one should have to face dementia alone.