You discover it subtly, alone. You discover it long before the diagnosis. You’re only guessing, but later you look back and realize, yes, that was when you first knew.
My mother and I are sitting in a Cracker Barrel restaurant across from one another. It is early April, ten in the morning, not many other people here. Outside, it’s in the nineties. At home in cool wind, the leaves are just blossoming.
I think of my son in his physics class right now. Of my undergraduate students, reading Elizabeth Bishop. Of my husband, driving to the airport to pick up our daughter, who is arriving from Boston.
I feel a kind of sadness at all those things going by without me—though sadness isn’t exactly what I mean. Loneliness, maybe. Longing.
As my mother gets older, I have vowed to fly from Philadelphia to Dallas to visit her more often. But conversation, which used to leap and sizzle between us, has been hard to ignite on this trip. I lean forward and say, “Aren’t these pancakes great?”
“If you like pancakes.” My mother’s jaunty turquoise bracelets jangle on her arm. She grins impishly.
“But Mom, you asked to come.”
“Did I?’ she asks. Her black eyes blur, go unfocused. She’s been working on the stack for forty-five minutes but hasn’t managed to cut more than a V in it. Teasing her, aware that I am reversing the role of mother and child, I cut a neat, wedge-shaped bite with her fork and lift it toward her mouth. She zips her mouth shut and shakes her head.
Fair enough. She doesn’t want to play. “You ready to go?” I ask her, wadding up my napkin, laying it beside my plate. But where? I wonder, to what? She–who has always bloomed with so many places she wants me to visit–can’t think of anything she wants to do.
I pay the bill and we walk slowly across the sweltering macadam to her car. I match my pace to her small steps. I remember walking beside one of my toddlers. I help her into the passenger side and drive to her house, where she plops onto her couch. The TV is already on, with the sound off.
“How about visiting Marian?” I ask.
I think, okay, if she doesn’t want to go anywhere, I’ll go through her closet and get the stains out of her white blouses. I have started helping her in this way.
I invite her to come into the bedroom so we can talk while I work. She looks at me blankly, then fixes her eyes on the news announcer. So I leave her and go to her bedroom closet, where I begin to haul her clothes out, eight to ten hangers at a time. I spend the afternoon checking for food spots, making a pile to take to the cleaner another pile for me to wash. Then I take the elevator down to the laundry room alone. Meanwhile she snoozes.
Several years ago we silently crossed a boundary. Increasingly she was forgetting to send birthday cards, garbling phone messages, forgetting to take her pills, losing bags when she flew to visit us, stockpiling strange items in her freezer, calling our youngest child by my brother’s name.
But it was on the day of the pancakes that I tumbled: something really was wrong with her. I didn’t know what. Maybe I should have guessed Alzheimer’s. But this was early in 2000 and there wasn’t much news about Alzheimer’s. I felt unmoored, confused, and lonely.
My mother had lost her husband in her late thirties–our handsome, restless father–and gone back to work as a nurse. She battled to feed and clothe her three children and send them to college. She settled in for the long haul.
People thought of her as funny and courageous. Even when I fought her—and believe me, I did—I still knew where she stood, counted on her. And then suddenly, I couldn’t find her. She was gone. At least I thought so. She was like a landmark, now abruptly missing. I was a grown-up with a career and children. I was astonished that without my mother, I hardly knew where I was.
But as time went on, I learned that my mother was not gone. Her memory was becoming increasingly unreliable, yes. Sometimes she would talk as if she were thirty again. Or twelve, asking her father questions. Or forty-five and just falling in love with my stepfather.
One weekend when I came to take care of her I saw that it was as if all my past mothers now lived in her. I recognized them. They were like characters in a play.
As my visits to Dallas became more frequent and more intentionally about caretaking, I began to understand my mother better. In fact, I spent thousands of hours with her. Because I knew the story of her life, I learned to recognize the images and metaphors she used from her past life. I learned how to interpret what she meant.
After the awful discovery, that momentous dawning—you catch as catch can, you improvise out of guts and love.
You think you won’t, but somehow you do–you will–stay afloat.
September is World Alzheimer’s Month. Across the globe, 35 million people and their families are affected by dementia. It’s going to take all of us to change these numbers. Visit the Alzheimer’s Association for three easy ways you can get involved and help end Alzheimer’s.