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hands locking into stiff, useless claws, that back catalog of wrongs seemed puffed up with self--importance, as outdated and embarrassing as a box of clothing left over from my teen years.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?”