I KNEW my time with my mother was running out when I heard that she could no longer feed herself in the mornings. My sister Monique phoned to tell me that our mother, Cécile, sat with hands resting on the table as our brother spooned oatmeal into her obedient open mouth, wiping the corners clean with the spoon. This first sign of the paralysis to come meant that my mother’s neurological disease was advancing rapidly. That’s what progressive supranuclear palsy (PSP) does—it progresses, ultimately robbing patients of their ability to speak, to swallow, to move, even to focus their eyes. I could do nothing to stop it, only try to reduce the regrets that might haunt me after her death.
Monique, my youngest sister, never tells me what to do but leaves a pause for me to fill in. “I’ll fly out to see her within the next few weeks,” I promised the silence.
This could be my last chance to talk with my mother. I had never faced such a moment before, and I had no idea how to prepare for it. As my hands mechanically folded and packed my clothes, my mind was busy unpacking and shaking out family stories, looking for questions I still needed to ask or painful moments I needed to smooth out with her. My power of recall makes me our family historian, so it’s all there: dozens of tactless comments that still sting, a long list of maternal mis-demeanors and a space that still waits to hear her say, “I love you.” In short, I had my reasons for moving 3,000 miles away. But when I thought of my mother’s hands locking into stiff, useless claws, that back catalog of wrongs seemed puffed up with self--importance, as outdated and embarrassing as a box of clothing left over from my teen years. I was sick of going through those worn-out stories. All I wanted to do was bake for her once more.
Baking was the easiest way to show her I loved her, easier than talking with her about my divorce, my work or why I was raising my children in California. I packed her favorite recipes in my bag.
“Very nice!” she said when I served her a slice of feather-light chocolate--almond cake. But she ate only the point of the triangle. She wanted something more from me this time.
I pulled my chair closer to her wheelchair and asked about her appointment with her psychopharmacologist, who was trying to remedy her depression.
“He says I’m not going to get what I want,” said my mother. She was a writer and editor, but PSP had ravaged that part of her, too. Now when she went to find the words to tell us how she was feeling, they shifted, slipped sideways and vanished, leaving her with a half-open mouth, struggling to cross the gap between her thoughts and our ears. I wasn’t sure how to decode this latest message, but Tom, my stepfather, explained: The doctor had said depression wouldn’t kill her and had urged her to engage with life, get back to doing the things she’d always loved.
“We can help you garden or set up your easel,” I suggested in my most gentle nudging voice. “Monique could bring her kids over more . . . ”
“I don’t want to!” she burst out. We waited for her to gather her words and explain. “I don’t want to make an effort. I can feel I’m losing myself. And the longer I live, the more I’m going to lose. I’m ready to let my people go.”
Let my people go, said the woman who had taught me about Moses, without any sense of irony. I wanted to laugh. Or cry. Or mash chunks of cold butter into flour with a fork. Anything, in fact, not to have this conversation.
“So you don’t feel like yourself anymore,” I said, feeling my way as I spoke. “And you don’t want to make the effort to fall in love with your favorite activities again, because that would just make it more painful to have them slip away. Is that what you mean?”
“You really see me,” she said after a pause, wonder in her voice. “I see you, too.” And indeed her green eyes were looking straight into mine, level and steady, as they used to before this disease took her ability to focus. Like an embrace, that gaze shifted something inside me. I was no longer here to neaten the edges of our relationship, win a declaration of love or affection and close the case. Now—and at last—I was here for her alone.
“I don’t want to disappoint people,” she said, “but I don’t want to go on.”
“No matter what you do, some people will disapprove of your choices,” I found myself saying, even though I knew full well this would take her where I did not want her to go. “Since you can’t please everyone, just focus on the people whose opinions matter to you. Of those people, who would judge you?”
“My children?” she whispered.
“Not me,” I said. “You’ll have to ask the others . . . but I think maybe not.”
“How, then?” she asked, eyes shining as she leaned forward. The energy she couldn’t summon for painting or gardening surged at the idea that she could hasten her death.
I had unlatched her cage but could not bring myself to open the door.
“There are ways, Mother,” I said, choosing my words. “Talk to hospice.”
I returned to California, hoping that my mother wouldn’t follow up on my hint but knowing her better than to believe she would let it drop. Within a week she had requested hospice services and learned that she could end her life painlessly by refusing any food or water. She announced that she would begin her fast the following Tuesday. Hospice dropped off medications to ease her passing: morphine, if by any chance she felt pain from the hunger pangs and thirst; Haldol, to control restlessness and nausea; and atropine, to stop the death rattle and so lessen the anguish of those at her bedside.
My mother had one request: Hearing that she was likely to suffer some confusion, she asked my sister Claire to stay with her and help her keep the fast. Claire negotiated: She agreed to remind my mother of her intention every time she wavered but refused to deny a repeated request for food or water.
I called Tuesday night, and Claire told me Day One had passed with puzzles, a walk around the pond with my mother in her wheelchair and conversation on the back porch. When my mother’s mouth felt dry, Claire would spritz it with a special artificial-saliva spray.
Her report for Day Two was the same. The night of Day Three, I called again.
“She’s doing good,” said Claire, making an odd sound that wasn’t quite a laugh. “The new ‘good,’ that is. She’s still fasting. Perfect record.”
“I’ll fly out tomorrow and be there when she wakes up on Saturday,” I said.
As I packed, I imagined myself cooking meals for my siblings as they came over to visit my mother, trusting in shared food to support and comfort us. I even opened my recipe binder.
“What are you thinking?” asked my husband, resting his hands lightly on my hunched shoulders.
I closed the binder. I was thinking of nourishing my mother. But the meaning of the term had changed so much that now we could no longer even eat in front of her.
Saturday morning I greeted her with a smile that trembled at the sight of her, shrunken, tired and disheveled in her wheelchair.
“Hello, Mother,” I said. “I’ve come to visit. How are you doing?”
“Lasting forever,” she whispered, her voice just a shallow movement of air in a dry mouth.
I forced a laugh and took out a knitting project I’d started just so that I’d have something to do with my hands while I sat in the uneating, undrinking silence. I picked up the pattern and started telling her about the garden I’d planted and the abundance of cucumbers and tomatoes and . . .
I caught myself and stopped. “I did bring you something from my garden that you can enjoy,” I said as I rose to my feet. I brought out a small plastic bag of lavender that I’d picked just before leaving for the airport and rolled some between my fingers, then held it up to my mother’s face.
“Lovely,” she murmured.
Though Claire and I guarded our mother from the sight of food and even any mention of it, I did make one mistake. I’d put a bowl of peaches on the living room coffee table, thinking my mother never went there, but she saw them through a doorway as Claire wheeled her to her room. “Yum,” she said playfully. Claire shot me an accusing glance. Like a child trying to hide something too late, I grabbed the bowl, turned my back on my mother to screen it from her and scurried out into the adjoining room to thrust the peaches into a pantry closet. When we were young, my mother would sometimes play along with this type of awkward pretense, silently giving us a second chance. I hoped this would be one of those times and felt a wave of relief when she looked up at me with a conspiratorial smile that seemed to say the incident was officially forgotten.
The next day, when Claire was out, the home health aide came to see me.
“She’s talking about peaches,” said the aide.
I went to my mother’s room, sat next to her on her bed and swung my legs up, so we were sitting side by side, leaning against the headboard, as we had not done for decades.
“I was wondering,” said my mother. “Can I keep my promise?”
“Of course you can,” I said, sounding too hearty.
“ . . . and have a peach?”
I wished Claire were there.
“Well, Mother, you can have what you want,” I said. I paused, hoping she would ask for the peach directly, insistently, so I could just give it to her. But she said nothing. I knew what I had to say next. I had made a promise, too.
“However, anything you have is going to slow down the process,” I continued, keeping to the script and hating every word. “Is that what you want?”
I did not have the guts to push for an answer, the way Claire always did. I couldn’t bear to hear her say one more time how eager she was to die. And I couldn’t stand that calm voice coming from my mouth, the voice that seemed not to care which choice she made.
Instead, I stroked her short silver hair, gently massaging her scalp with the tips of my fingers, and sang a French song from my childhood:
I have loved you for a long time
Never will I forget you
But my voice broke, so I switched to the other lullabies she had sung. I sang more and more quietly, then paused. My mother seemed asleep.
“Nice,” she murmured.
I hummed until I heard her snore softly. I tiptoed from the bedroom, boiled water for an enormous pot of tea and drank four cups of it.
By Day Seven her lids opened only halfway, and her hands lay limp next to the puzzle she had been doing. At any moment she could have chosen to eat and drink. We could have put food in front of her and urged her to eat. Instead, that day and the five days that remained of her life, we watched as she drifted in and out of consciousness. We swabbed her mouth, cradled her fragile shoulders, cupped her hands in ours and told her we loved her.
I longed to bake for her instead. It would have been so much easier for me to stand before her with flour smudges on my jeans and oven mitts on my hands, smiling and holding out a bubbling rhubarb crumble. But what my mother wanted from me now was that I stand back and watch her destroy the body she’d always cared for, the body that had given us all life.
I did what she wanted. It may not have looked like love, but it was, for once, entirely about her.
ANNE-CHRISTINE STRUGNELL bakes a cake each year on her mother’s birthday.
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