Alzheimer’s Before Forty

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At the age of 37, Jo Giles was diagnosed with a form of Alzheimer’s disease. He first shared his story with Shannon Proudfoot for Maclean’s at the age of 38. In the three years since, the disease has progressed in “plateaus connected by sudden declines,” and in this latest piece, Proudfoot looks at the agonizing decision Jo’s wife Robin is now facing. Robin “knows a reckoning is imminent”— with Jo becoming more and more difficult to care for at home. She is considering a nursing home, but before Jo lost the ability to verbalize his thoughts he told her he despised that idea and would prefer to end his life. This is not possible: “… when medical assistance in dying became law in 2016, excluded were “advance requests” that would have permitted people with dementia to set out terms for their death while they still had capacity to consent.” And Robin herself is struggling to imagine a home without her husband — although they stopped being “husband and wife” a long time ago, he is still “her person,” even as his former self slips further and further away. 

Mostly, Jo looks like any guy in his early 40s and just like he always has, because even as he’s had to switch to comfortable clothing with no buttons or zippers, Robin has stuck close to his personal style; his wardrobe is still heavy on band T-shirts. But there’s a sort of veil in his gaze now and a relaxed softness in his facial features. When Instagram or Timehop present Robin with old photos, she can see some important source of light in Jo that’s gone now. A trip to the beach two years ago seemed ordinary, but when the photo appears, she can remember the day vividly: a postcard from another world where such things were possible. “It’s pretty devastating,” she says. “But also it’s nice to remember those times.”

Doctors often use the term “insight” to discuss whether a person with dementia is aware of their condition; some people come in for an appointment furious at a spouse who keeps insisting they’re losing track of things when they’re sure they’re not. Jo was acutely aware of his illness early on, and he and Robin talked about it often. “He was just frustrated by the hand he was dealt, and he was always, always worried about being a burden,” Robin says. “We would tell him, ‘You’re not.’ ” Jo stopped having those conversations about a year ago.

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