Jocelyn Reekie’s husband Bill was 55-years-old when he was diagnosed with Alzheimer’s. For the last 15 years her role as his caregiver has slowly taken over her role as his wife, though she believes the two go hand in hand.
“I took a vow when we got married and I took it pretty seriously, although nobody thinks of the ‘for worse’ part,” Reekie says.
She is learning to be more flexible and patient. She has to. Every time she thinks she understands, every time she thinks she’s got a handle on things, “the goal posts change.”
“You’re watching this person who was a vibrant person get lost and die, basically, inch my inch, and that’s the hardest part,” she says. “It’s not only your aspirations and dreams that get put on hold, their’s become non-existent and yet they are still having to live. They are still having to get up every morning and face each day – provided they can get up.”
The Reekies are one family of the 25,000 per year in Canada who have a member diagnosed with Alzheimer’s.
The disease kills the brain. The Alzheimer’s Society of Canada’s website describes the disease as plaques – numerous dense deposits that become toxic at excessive levels – and tangles, which interfere with vital processes, choking off the living cells. The brain shrinkage continues over time. Eventually a person diagnosed with Alzheimer’s will not be able to communicate verbally or look after themselves. Care is required 24 hours a day.
Reekie admits that caring for Bill is taking a toll on her, as well, but she focuses on caring for him with respect and kindness, using the coping mechanisms and tricks she has learned from the monthly caregiver’s support group she attends.
Bill goes to an adult care program four days a week, three of which are paid for by Island Health. She pays for the other. In theory this should give Reekie time to work on her writing, but she is losing her ability to focus on her projects because she is too focused on her husband.
“Right now I am struggling with trying to find a way to get some soul back,” she says.
Despite the hardships, Reekie does not want to put her husband in a care facility, saying she is unable to let go at this point. But she hasn’t written it off yet.
“You do get cracks,” she says. “Cracks do develop along the way, and you just think, ah, I didn’t know that about myself, I don’t like that much about myself, but you learn things. You learn a lot about yourself.”
When Reekie first noticed something was off, a couple of years before the diagnosis, she didn’t want to admit what it could be.
“It was me who did the denial for a couple of years saying, ‘oh, I think it is just work stress,’ because that’s what I wanted it to be.”
The couple lived on Quadra Island at the time, and Bill performed the upkeep on the property. At one point a gate needed to be repaired – and he didn’t do it. The horses kept getting out and Reekie got more and more upset. She finally went out and built the new gate herself. It was only later that she realized he hadn’t done it not because he was being lazy, but because he simply couldn’t.
She really knew something was wrong when he started parroting her ideas back to her in conversations. Her husband was an articulate man, with ideas of his own, so for him to repeat an idea she had shared minutes before, as if it was his own and as if it was just occurring to him was strange.
All of this, together with finding unpaid bills and getting tax forms returned because of errors, sent Reekie to the doctor.
Reekie figures her husband knew, deep down, what was going on. He didn’t argue when the doctors came to his house to assess him. When they told him he had a cognitive impairment that wasn’t anxiety or depression, he accepted that and he didn’t argue when they sent him to the Alzheimer’s clinic at UBC.
At the moment, Bill still remembers his family, and Reekie is grateful for that. But he can’t care for himself at all. It is difficult for Reekie because Bill spent his whole work life as the boss – he used to manage Strathcona Gardens – and now he has people telling him what he can and can’t do all the time.
“Bill goes into respite and he knows he is in a lockdown, it just infuriates him, it just frustrates him beyond measure,” Reekie said. “And I don’t blame him.”
Reekie sees flashes of the old Bill every so often. He finds joy in playing with his six-year-old granddaughter, swimming and listening to music. Somehow, he still understands the jokes when they watch The Comedy Network, even though he can no longer follow and contribute to a conversation.
Reekie mostly keeps her emotions to herself now, because Bill has his own grief to handle. He can’t think inside himself, let alone outside himself, she said. But when she was standing in the kitchen crying, not that long ago, he put his arm around her and stroked her back and told her everything was going to be okay.
“His inner compassion is still there.”
