A long journey into night
Alzheimer’s condemns a once-vibrant woman to a twilight existence
BY MICHAELLE JEAN
OTTAWA — It begins as little more than a whisper, a feeling that something isn’t quite right. That “something” may take the shape of an odd behaviour, disturbing and shocking. I watched as my mother moved slowly into the silence of a long tunnel. I watched as she became lost in confusion and stubbornness.
This once-cheerful woman, quick-witted, alert, active, always on the go, became increasingly distracted, losing her train of thought, fixating on the most absurd details. My mother, my bright and vibrant mother, rarely left the house any more, preferring instead to sit alone in the dark, the curtains drawn against the sunlight, caught in a kind of melancholy and weariness.
The cause was unclear. There were family issues and other circumstances, including the end of her job resulting from an accident at work, that might have explained her depression.
Certainly, there were signs that she was in distress: Seeing one doctor after another, and sometimes several at once.
She complained of insomnia, digestive problems, anxiety. She received prescriptions for sleeping pills, anti-depressants and other medications. To that dangerous cocktail she added a mishmash of vitamins and socalled natural products.
She lived on the ground floor of a duplex we shared, and I felt completely and utterly helpless as I watched her become mired in a thickening fog, increasingly absent-minded, forgetful, almost obsessively asking me the same question over and over.
The light f inally went on when I was interviewing a leading researcher of Alzheimer’s disease for a television program. As he described a typical patient, I saw unfold before me a portrait of my mother. Inside, I was reeling, my mind spinning, which I confided to him once the cameras were shut off. Two weeks later, my mother did a series of tests at the McGill University Centre for Studies in Aging.
The diagnosis cut me like a knife.
My mother read, her voice choked with emotion, her heart heavy, the label on the bottle of Aricept: “For the treatment of dementia and Alzheimer’s disease.”
Even today, my anguish remains lodged there, in my throat, behind stifled cries and powerless sobs.
My mother, a retired psychiatric and geriatric nurse, knew exactly what awaited her.
When she stood before a notary to sign her certificate of incapacity, her world, as she knew it, was shattered.
From that point on, things progressed relentlessly. From one stage to the next. From denial to aggression, as though it were one last fight, one last attempt to resist — as her very existence, her body, her history and her memory slipped away for good.
No more independence, no more privacy, no more choice, not even the freedom to get lost in her pyjamas and slippers on the sidewalk in 25-below weather.
She had to suffer the stress and intrusions of her daughter. Me.
My mother became my sick child, my dependent child facing an irreversible countdown. She would never stop suffering until reason abandoned her completely.
I had to reinvent our relationship over and over. Reconnect through touch, recognize that her body responded to music like a wave on the open sea coming to wash upon the shore. Stay calmly by her side, rock her, lay my body next to hers in her hospital bed, cry on her shoulder and allow her to comfort me with the simple beating of her heart and occasional murmur.
My story is but one among thousands shared by adult children who care for a parent living with Alzheimer’s or dementia.
It carries a heavy weight of emotion and sadness, but also hope that each of us will continue to love our parent in our own special way.
It is something that I wish with all my heart for my daughter to remember of her grandmother: That love, even transformed by this terrible illness, never wanes and, in many ways, makes us stronger.
Gov.-Gen. Michaelle Jean is honorary patron of the Alzheimer Society of Canada. Her 76-yearold mother, Luce Depestre, is a former psychiatric and geriatric nurse who once cared for patients with Alzheimer’s disease; she received her diagnosis 11 years ago. Jean visits her mother regularly at an Ottawa-area nursing home, often with her daughter, Marie-Eden.
For CanWest News Service
JULIE OLIVER/OTTAWA CITIZEN
Gov.-Gen. Michaelle Jean cradles her mother and hums along with her favourite music, Puccini, playing on a small CD player in her mother’s nursing home room. Diagnosed with Alzheimer’s 11 years ago, Jean’s mother is in the latter stages of the disease.
Canada's Governor General has impressed us in the past - even more so now with this heartfelt story about her mother.
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