Victoria Couple's Dementia Journey: Joe & Amy Find New Support

In an apartment home offering bright, wide views over Victoria and its shoreline, Amy Cameron sometimes feels trapped in a prison. Once a confident leader in the IT world, someone who organized and hosted amazing events from barbecues to galas, Amy struggles if husband Joe loses track of time, engrossed in something else. “I used to go wherever I wanted, whenever I wanted,” she said. Joe and Amy spent much of their working lives overseas before retiring to Greater Victoria. Their plan was like many who live in the capital—ride bikes, travel, hike and head for the ski hill. About a year into retirement, something started to slip. Amy started to have memory lapses, and when others started noticing, it became clear something was amiss. The couple is happy she got a diagnosis relatively quickly, though the impacts of early onset Alzheimer’s at 59 is far less appealing. A pandemic on the heals of a dementia diagnosis didn’t help. “From my perspective, I am slowly losing my wife, my partner, and my friend in small steps as all of these minor losses add up. We don’t know how long this process will be, but we know it will at some point be fatal,” Joe said. “It’s not a very pleasant thing about dementia, but it is always there, which is why it is important to have help to learn how to deal with it and to possibly enjoy things despite that.” But there are some comforts and joy alongside the terrifying moments of loss. A nurse at Royal Jubilee Hospital pointed them toward the Alzheimer Society of B.C. – an alliance Joe describes simply as “fabulous” in helping shape the journey. Even as Alzheimer’s Awareness Month, January, closes, the couple lauds the work done by the society that leads them to the right resources and provides connections. The agency is sharp at cutting through the confusion, for Joe as much as Amy, pointing to how to access resources that aren’t always readily visible. That’s even just the surface, Joe says, having watched a head member of the executive work a room at the B.C. Legislature. They’re always advocating for folks facing dementia. “I realized what I’d seen was just the tip of the iceberg,” Joe said. The society lobbies locally right to the federal level to change policy. Always working to build accessibility, it also offers resources in Chinese languages, and South Asian such as Punjabi, Hindi and Urdu. It has introduced information created alongside First Nations, Métis and Inuit partners that reflect trauma-informed and culturally safe approaches. The society is crucial at pointing out resources, and how to access them – from numbers to call, to a list of words to use to elicit best results. “It got us out of the fog and the gloom when you first get diagnosis,” Joe said. It helps forge crucial connections from small in-person groups to large online formats outlines how to get help and support. “The most important thing was, there are five couples sitting in the room, going through the same thing,” Joe said. A group conversation will often leave someone with dementia lingering, or out entirely. But with people who love them their side, and people who understand the challenges – so similar yet different for each individual – sitting across the table is a blessing. There’s an understanding around the room “their brain is actually fighting them,” Joe notes, and patience holds when someone struggles to join the flow of conversation. Joe and Amy have forged a friend group they took with them, to open the door for more folks to access the group resources. “We can talk about it quite freely and you feel you’re not holding anybody up,” Amy said. The moments of joy don’t dull the daily losses. They just can’t do the things they planned as a couple in retirement. Amy’s ability to do things she used to enjoy, riding her bike, hiking and skiing, are waning and impossible on her own. Beyond that, she’s losing memories of who she is, alongside the physical ability to achieve what once were simple tasks – dressing, cooking, or reading for herself. “Losing all these things that you developed to make yourself an individual means that she feels like she is losing the person she once was, and that causes anger and despair,” Joe said.