Four years ago, Jo was diagnosed with dominantly inherited Alzheimer’s disease, an extremely rare form caused by a genetic mutation slithering through his family tree. Jo watched his mother die of the same illness when he was a teenager. Even in this early-onset form of Alzheimer’s, Jo is a terrible rarity: he was 37 years old when he was diagnosed.
Jo’s ability to speak has all but disappeared, his mobility is reduced to a slow, assisted shuffle around their apartment, and he requires hands-on help with every task of daily life, from dressing and brushing his teeth to eating and safely sitting down in a chair.
So far, with the help of her family, the day program and the sheer force of her own will and devotion to Jo, Robin has managed to provide all his caregiving at home. Families of people with dementia land in different places on this issue, but to her, it’s beyond question that Jo is not here anymore; most everything that made him Jo has been stolen. “But it’s almost like an echo that’s left,” she says. “It’s like I want to take care of this Jo because it’s honouring the real Jo.”
When she’s forced to move Jo into a nursing home and Robin loses her ability to care every day for the echo of the man she married, that will mean he’s really gone. “Sometimes people very kindly say, ‘Oh, it will be better when Jo is living somewhere else.’ No, it won’t. That’s the part that people don’t understand. It won’t be better. It will be the worst part,” she says through sobs. “Because I don’t consider what I’m doing a negative thing.”
Jo was adamant that he didn’t want to end up in a long-term care facility like the one in which he’d visited his mother—sometimes with Robin along for the ride when they began dating as teenagers in Kapuskasing, Ont.—and he hoped that Canada’s legalization of assisted death would allow him to avoid that. But 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.
Now, that dark forest Jo described is closing in.
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