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"SLOW. DOWN. You're panicking, you're going to kill somebody."
The words cycled through my mind as I gunned my SUV up and down the hilly roads of Bowen Island, B.C. My 77-year-old mother, already well into the mid-stages of Alzheimer's disease, yet surprisingly still mobile, was missing. One moment, Mum had been happily puttering around my parents' comfortable home; the next moment, she was seemingly gone. A cold November rain was falling, and an increasingly impenetrable late-afternoon darkness was descending on the towering spruce and Douglas firs. The thought of Mum spending the night outside alone, lost, confused, scared – or worse – evoked a primal fear, the intensity of which surprised me.
My family had prepared for such an event, of course. We had to once we decided – not without considerable discussion and debate – to care for Mum at home for as long as we possibly could. But that didn't make the rapidly unfolding situation any less stressful.
So after combing my parents' house and their rugged, ravine-filled one-acre property, my father and brother set out on foot. They had walkie-talkies and flashlights in hand and each scoured different walking trails in the immediate surrounding area. My job was to look along the road that carved its way through the forested slopes on this part of the island.
I guess it had to happen some time, but I was still surprised. We'd done all that was possible to prevent a wandering incident (an ever-present risk for people with Alzheimer's who are still ambulatory). My parents' home was more secure than most of the residential care facilities we'd visited. We had added the necessary rings of security to the house and the property as Mum's Alzheimer's progressed. The safeguards included a novel system we'd developed ourselves which allowed us to monitor the opening and closing of all house doors and property gates. When triggered, the system would immediately notify us by buzzing pager devices that we carried at all times, and it had already proven its worth on more than a few occasions.
Most importantly, we'd also managed to ensure these safety measures were as unobtrusive as possible. We didn't want Mum to know that she was being watched so closely, to realize she was being constrained. It was a difficult balance to strike, at times, but one that was important – from a quality-of-life and happiness perspective for Mum, and, really, for practicality purposes for us as caregivers. That is, she couldn't protest or be upset by something she wasn't aware of: a reality of Alzheimer's disease caregiving.
Up until that afternoon, we'd been successful at staying ahead of the caregiving safety challenges that caring for Mum had presented. However, after some 40 minutes of looking on our own, she was still nowhere to be found. The time had come to call the RCMP and volunteer fire department to declare her missing, and to request a full-blown search.
"Where had Mum gone?!"
"How come the monitoring system hadn't been triggered?!"
"I thought you had been watching Mum!!"
The tension grew and recriminations started to fly between my father, my brother and me as the reality of the situation started to sink in.
Just as Dad was about to dial 9-1-1, he decided to check the car, parked, as it always was, at the end of the laneway. Sure enough, there – sitting in the darkened back seat with jacket and tuque on, purse on lap, waiting patiently for us under the impression we were to be going somewhere and completely unaware of the frantic search we'd been conducting – was Mum. The sense of relief in finding her was as immediate as it was overwhelming. In truth, it was all I could do to not start crying like a child.
Following those intense 40 minutes on that day in November, Mum never again went physically missing. It wasn't just an increased vigilance in our home-caregiving protocols, it was also the relentless advance of the Alzheimer's. Its eventual overtaking of Mum's preternatural physique and iron will, so admirably – and, at times, heartrendingly – on display in defiance of the brutal disease, saw to that.
Yet, right up to the day Mum would leave this world for good (with her immediate family at her bedside, in the peace and quiet of my parents' home) we would continue to "find" her over and over again as her disease progressed.
We were lucky that the evisceration of a loved one's essence and character, perhaps the darkest effect of Alzheimer's, never fully took hold in Mum. Her strength and inborn graciousness greatly diminished over time, but would still shine through in her beaming smiles, full of life and character. We could still hear it in her hearty chortles over something funny, perceived or real, and noted in the mischievous twinkles in her eye for no particular reason.
Those moments – some long-lasting, others only fleeting – occurred often and were a source of great comfort, even if bittersweet at times. Mum was able to stay on Bowen Island until she died two years after that dark, rainy afternoon. That she never spent a night away from home, that we were able to care for her safely and in maximum comfort – from beginning to end – allowed us to experience those moments on an ongoing basis.
Alzheimer's caregiving at home is an extremely challenging – and, at certain points of the disease's progression, seemingly impossible – undertaking. However, our family was lucky to have a number of devoted family members (first and foremost, my father), the necessary financial resources and a large dose of good fortune in coming across caring, professional and reliable caregivers. It all made home care ultimately workable for Mum and for our family. And I'll forever be grateful.
Michael Long lives in Vancouver.