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Illustration by Drew Shannon
Fifty years ago, when I married Doug, I was a 24-year-old awestruck woman, in love with a man who owned a car, had a real job, had his own furniture and his own place to live. He could fly planes, sail large boats in the ocean, ski down black diamond slopes, paddle a canoe into the wilderness. He spoke English, French, Turkish and German. I knew I was promised a life of adventure and I was pretty sure he was a keeper. He was also oodles of fun. We read the same books, laughed lots and tears welled up in his eyes, listening to his favourite symphonic music. He was a gentleman and kind.
All those years ago I understood that marrying an older man likely meant caregiving and a longer widowhood for me. But never did I contemplate asking, “How does a person die of Alzheimer’s?”
It’s not a disease of the heart although it breaks one’s heart. It’s not a disease of the lungs although each breath is precious. The belaboured brain can no longer signal the lungs to breathe, the mouth to swallow, the heart to beat, the kidneys to flush. The brain is depleted, losing its capacity to keep the organs of life alive. It’s a long, long and sometimes even longer time between meaningful personal connections and the physical body finally saying it’s over.
In these times where we attempt to control everything, an individual of sound mind seeing the end coming can choose to sign the MAID instructions, before the pain is unbearable or the threat of dementia sets in. Thus, can the interminable robbing of the personhood, the spark of life, be avoided for some. The existential tragedy of having a loved one plagued with Alzheimer’s is that nothing can be done to speed the process.
So how do those not given that choice live through this time? How does the essence remain alight for the long years that await Doug and me until his sturdy body no longer functions? How does Doug spend three years, five years, 10 years physically intact as his cognition seeps away? How can this phase contain meaning? How can joy remain, how can love endure?
Is it possible to live on an elevated plane, float over the physical shell and hold on to the spirit? Is it possible to believe that Doug is still there? Is it possible to stay by his side, to stay loving, to stay engaged, to forfeit abandonment?
About six years ago my daughter advised me: “Mum your life task now is to learn patience.” She saw that Doug’s intelligence was fragmenting and my patience along with it. I have learned to be patient and the lesson has served me well. But the next task?
The tendrils of ache are stretching into all the delicate openings between my heart and my sad smile and my dulled brain. I’m mourning Doug. Oh, he has not died. Rather he is locked away in his retirement home. For his safety, for my sanity.
Doug’s personhood still shines brightly. But what is next when the pretend conversations don’t flow, when reading a children’s book doesn’t elicit a chuckle, when he no longer sings along to the old songs, when “I love you Doug” is not responded to with “I love you too Mary.”
Alzheimer’s robs us of “goodbye my love” conversations. The ones where you recount the first canoe trip, the first chase down a ski run, the first moment you knew you were in love. It steals declarations of last wishes. Of messages to loved ones far away. Of sharing deepest pleasures and regrets, joys and sadness. Of the chance to soothe and comfort.
What to do when the body doesn’t rise from the bed, day after day after day? What is this purgatory that creeps into those dying from dementia? Is there a way to prepare for it? Is there a lesson to learn? How to fill one’s heart and soul and mind sufficiently to remain gracious and loving? This is my unspoken dread, the unavoidable dread.
I hardly dare admit that I don’t want him to live beyond the time I look forward to visiting. Beyond the time I want to hold the rice-paper skin of his silky hands, beyond the time he surprises me with lips puckered for a kiss. How can I keep my heart pried open when the hinges become rusty?
Oh, I know our days of clutching each other to dance to Sweet Caroline or As Time Goes By are limited. But please can we still be moved by Dance Me Till the End of Love? Please, please may your body drift off before the vestiges of you slide into oblivion.
This afternoon we sang along to old favourites with Andre and Marie, entertaining in Doug’s residence. I held his soft hands. Doug erupted into the lyrics of Somewhere Over the Rainbow. His eyes filled with tears as the musicians packed up, his positive emotional response.
I go with Doug to these concerts so we can have a shared experience of pleasure. We often dance to the tunes. I’m storing poignant moments in my savings bank to draw on when our relationship becomes ephemeral. When I feel as though I am floating over him seeking my dearly beloved, as he was even a few months ago.
I’m practising anticipatory grief, hoping that when the end comes, I’ll be ready.
Mary Hardwick lives in Ottawa.
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