Tori’s story: Facing fear on the dementia journey with her dad

Five years ago, Tori Wesszer watched as her dad Bob struggled with the hardware on a curtain rod that he was helping her assemble. It was a simple task he never would have had a hard time with in the past – and one that marked the moment they each acknowledged the elephant in the room.

“I asked, ‘Dad, are you OK?’” Tori recalls. “He said no, and confessed his fears.”

Bob, then in his mid-60s, suspected he had been living with young onset Alzheimer’s disease. He had recognized what he thought were small signs for years; it was the same disease Bob’s father had lived with.

Despite the family history, and his sharing concerns about cognitive changes with his family doctor (two of them, in fact), Bob wasn’t diagnosed until he voluntarily enrolled in a clinical study and was diagnosed by the research team. This, Tori says, underlines the fact that there is much work that needs to be done at the ground level to give health-care professionals the resources and tools that they need to help diagnose and navigate dementia. For Tori, coming to terms with the diagnosis of Alzheimer’s disease is something she describes as “beyond hard.”

“For a while he didn’t want anyone to know,” Tori says. “He’s since realized it’s not as uncommon as people may think, and that if his story can help others that it is a story worth sharing. It’s completely heartbreaking. We aren’t alone in this battle.” 

Tori, the Kelowna-based lifestyle blogger and registered dietitian behind Fraiche Living, has begun sharing their story publicly to encourage others concerned about their own cognitive changes to advocate for themselves and seek the medical attention they need. She hopes family members and friends of people living with dementia will find the courage to reach out to get the help and support they need.

“It can be scary to talk about it,” she says. “But as scary as that is, it is even more difficult to not talk about it. No one should suffer in silence.”

While Bob’s journey with dementia is advancing slowly, something the family is grateful for, and his abilities are only changing in subtle ways, Tori lives with her concerns that she too may be at a higher risk of developing young onset Alzheimer’s disease. While the majority of people living with dementia do not have a strong, known genetic link, members of Tori’s family have tested positive for a rare gene  associated with a higher risk of developing the disease. Through her fears, Tori focuses on her close relationship with her amazing dad, a kind, gentle man with an incredible sense of humour and a willingness to give the shirt off his back. He is surrounded with love and support from friends and family including the love of his life Patricia and their two children, Tori and her younger brother Terry.

“Now we talk openly as a family – but it’s hard to talk about the future,” Tori admits. “Knowing that there isn’t a successful treatment yet beyond mitigating the symptoms. It’s hard, but we remain hopeful and optimistic. I will never ever give up the fight for my dad.

Join Tori at Breakfast to Remember to help support people affected by dementia

Tori is among supporters of the Society helping change the future of dementia through Breakfast to Remember, an annual breakfast fundraiser held in Kelowna, Vancouver and Victoria, which has moved online for 2021 in light of the pandemic. This year’s event, set for March 4 from 7:30 – 9 a.m., features a keynote address and live Q&A with astronaut, Col. Chris Hadfield. Ticket purchasers will also receive access to an exclusive research event featuring a discussion with dementia researcher Dr. Alexandre Henri-Bhargava. Tickets are available at BreakfastToRemember.ca.

Genetics and Alzheimer’s disease

It’s a common myth that if someone in a person’s family lived with dementia, others will also develop the disease. While genetics do play a role in the development of some forms of dementia, only rare instances of Alzheimer’s disease are inherited or familial, accounting for less than five per cent of all cases. Learn more about genetic testing and Alzheimer’s disease here.

There are many ways to help reduce the risk of developing dementia, including being physically and socially active, challenging your brain, eating healthy foods and managing stress. Find more brain health tips here.