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In the last few quiet moments before midnight, I used to sit in my mother's bedroom, book on my lap. We began with a 900-page collection of late-19th-century essays about cities and regions of Canada. This was followed by a 300-page book about our country written by Stephen Leacock. The choice of long books was a conscious one on my part, hoping that they would somehow grant us more time.

The chair was near the door so the light from the hall fell on the pages. Her bed, at the far end of the room, was in the half dark. This moment at the end of the day was shared by just the two of us after she had been helped to bed by my sister and me. She used to love to read but her arms and hands grew too weak to hold open a book or turn a page.

The rhythm and routine of these days slowly became familiar to us after my mother was diagnosed with amyotrophic lateral sclerosis (ALS). A rhythm and routine that remained unwelcome and unwanted because they reminded us that what had been her life and ours no longer was and never would be again. She slowly lost control of her body as neurons died and her muscles atrophied. Frail and anxious, her life was drawing to an end far sooner than she and we would have liked. ALS was slowly but visibly stripping time away from her and away from us.

Prior to the diagnosis, she had blamed the aches and pains she was experiencing on arthritis, high blood pressure and old age. The badges of those golden years that were, she said, more fool's gold than anything else. The diagnosis of Lou Gehrig's disease was like a tornado touching down in our midst, tearing the familiar and the comfortable apart. It was so unforeseeable and unexpected that in all the "end of life" scenarios we had imagined, it had never been one of them.

And so at bedtime, she was helped to the bathroom. Pills were placed on her tongue and a water glass lifted to her mouth. She was undressed rather than undressing herself. The nightgown was lifted over her head and her hands were gently pulled through the sleeves. The breathing mask was adjusted over her mouth and nose to ensure she would not suffocate in the night. Without the Bipap machine, her body would become poisoned by the carbon dioxide that lingered in her lungs. Her diaphragm was paralyzed and her chest muscles were too weak to push it.

She was laid on her side on her bed, one hand resting under her pillow and the other gripping a metal bed rail, as if anchoring her to life. The blankets were pulled up to her shoulder and the bedside lamp was turned off for her rather than by her.

These separate but connected moments had replaced the nightly rituals of her previous life. She was no longer able to sit at the edge of her bed, pausing to reflect on the day. She was no longer able to adjust her own pillows, or fidget in bed to get comfortable. She could no longer read a book, waiting for sleep to come. She could not shut the rest of the world out at the end of the day because here, as everywhere in her life, we intruded to watch, to worry and to help.

I sat near the door, reading aloud to her. My mother lay in bed listening to my voice, her eyes closed, hoping that sleep would come before the clock struck midnight. If she was not too hot, if her mask was not leaking, if her feet did not feel swollen, if she did not have to go to the bathroom again and if the pillows were just right, my voice lulled her to sleep.

She often stirred more than once in the night. The mask muffled her voice as she called for my sister or me. If one of us had not slipped into bed beside her for a few hours so that when she awoke she would not be alone in the dark, my sister or I would wake and go to her. Half-asleep, she would complain of thirst, pain in her shoulder or hip, a nightmare or the need to go to the bathroom. Or she would begin to cough, unable to clear her throat or the congestion in her lungs.

The familiarity and intimacy of reading stories out loud at bedtime was comforting to us both during a time in our lives when everything seemed so very unfamiliar, frightening and horribly unfair. It was as if, for the briefest of time, we found ourselves in the eye of the storm and her life assumed a momentary semblance of normalcy once more. We read together in the half-light of the room with this knowledge, the words written on the pages of the book shielding us from the rest of the world that had spun seemingly out of control.

Night after night, week after week, month after month, one long book following another. The last, a 996-page book on the Hudson's Bay Co., now sits on my dresser. My mother died at home, in the final minutes before midnight. Mine was the last voice she heard. I imagine that I will, one night before bedtime, open the book and silently carry on without her. But for now, a slip of paper marks the spot on page 139, two paragraphs from the top of the page, where the two of us stopped.

Kristin Hulme lives in Kingston.