Dementia Moment
By Cindy Shearer
From Volume 2 (2011)
In the Beginning is an image: My father in some weird mustard-colored shorts and his proverbial white T-shirt throws a football to a group of neighborhood boys. I stand on the edge of the yard looking into the game—anxious to get in. Not until I pursue the image do details then a story emerge.
Between 6925 and 6933 Hubbard Drive was lawn—a field just big enough for touch football games. When I was very young—something like six or seven—I wanted to play with the boys. My brother, the three boys who lived next door, and assorted other boys would gather in the yard—select teams, construct pass plays, wing the football down field, and touch-tackle each other. Often my father, in beige or yellow shorts and a polyester white V-neck T-shirt would come outside to play quarterback for one side or the other. His pants sagged (long before anyone thought of it as urban fashion). He just forgot or was too lazy to put on his belt. So holding up his shorts with one hand and throwing a spiral with the other, he’d mastermind the game. “I want to play,” I said from the strip of yard that slanted uphill—out of the way of hurling bodies but close enough so I could be heard. The boys—my age or just a bit older or younger—said no. My father said yes. If the boys wanted him to play, they had to let me participate too.
Okay, if they had to. Reluctantly, the defensive team figured out how to use me. Since I was the smallest child there, I could get low, move stealthily among the bodies and grab my father at the knees. Once attached, I would hang on for dear life until I brought him down.
I knew the boys didn’t want to play with me—and so after a time, I gave up the thrill I got from pushing myself hard, physically competing with them, being part of the game. As always, there is a cost to acquiescence. But for that moment I knew my father had stood up for me.
I stand up for him now.
I’m with my father in his room at WindChime of Marin, a dementia care facility—and, as is my custom when I visit him, I have him stand at the sink in his bathroom, brush his teeth and use Listerine even though it’s midday. If I don’t, he’ll never take care of his few remaining teeth.
My cell phone rings and I go to pick up—it is my brother, who is visiting my aunt in Ashland, Kentucky, January 8—our mother’s birthday. My brother will also visit our mother’s grave—something my father has also done on or near this date for years until now. So the phone call, like all communications to or visits with my father these days, has multiple layers of meaning. That my father will not think of our mother today or be aware of her birthday or death is an unspoken token of the moment. For my father, the image of Kentucky—my mother’s birthplace and his—is what looms large.
My father does not know where he lives. He has been at WindChime almost five months. He asks me, “Are you still in Lexington?” WindChime is in Marin County, California—and my father lived 50 years in Dayton, Ohio—until he came to stay with me in San Rafael a little more than a year ago. This is his first chance to speak to my mother’s sister since I moved him into full-time dementia care. Connecting to someone who is part of vital time in his life always stimulates him. My aunt is the remaining sibling in her family (her two brothers and three sisters are dead) as is my father in his (his three brothers and two sisters are dead)—so they also hold dual connection—as family and longevity representatives. But once on the phone my father can’t manage the conversation. He doesn’t make much sense—he can start an idea but can’t follow it all the way through. “We got back last night but then all hell broke loose,” he says, “I’ve got nose trouble and can’t find my fandango.” And then he really starts to ramble so I suggest we say good-bye. He signs off by saying something like in eight or ten days he should be free. Before the cell phone is back in my purse, the connection he’s enjoyed is gone, and he succumbs fully to the dementia moment.
The “we” he referred could be me or Pam, the woman who has become his constant companion since her move to WindChime just after his. He often thinks he is Pam’s caregiver. Now she waits for him in the middle of the room looking at her own lime-green sweater like she has never seen it before. My father turns to her, “What is your name?” he says.
The essence of my father’s Alzheimer’s (at least for the present) is represented in the sequence here. There is (1) a short but vital connecting to what has been core or central in his life, (2) a being in and enjoying everyday activity which, even on a locked floor, is reminiscent of life before—reading the newspaper in the living room or sharing meals with others at a dining room table, and (3) a dementia moment, which usurps everything else. It includes the awful not knowing—Pam’s name, that my mother is dead, when he last changed his shirt or sweatpants—and a jumbling of time that combines two or more past experiences into one or joins one or more real experiences with fiction (such as when he says that he was travelling all night and so had to rest after lunch. He did just eat lunch—but, of course, he hasn’t travelled anywhere). “How is Becky?” he asks. His insistent tone tells me his image of her is strong. He is asking about his mother who has been dead since the early 1970s. What to say? Join the moment with him? Tell the truth? Change the subject?
To relate to him, I have to step into whatever moment he is living in. Like any image, to really know it—I have to enter it and let it unfold.
The loss of my father to Alzheimer’s is also the loss of a chance to solidify the moments of my family—as the past slips away from him, it slips away from us too. We are left to pursue our images as they come to us, filling in gaps as we can or can’t imagine.
Okay, if we have to. In a way, this seems oddly right—our family stories have always been a mix of fact and fiction.
My father is a storyteller—his life and training have led him to that. A former contract negotiator, arbitrator, and trial attorney, he’s driven and restless, a very competitive personality. His first job in the 1950s after University of Kentucky law school was investigator for the Civil Service Commission, checking the backgrounds of potential employees for the Atomic Energy Commission. His job was to search out communists in the back woods, dry creeks, and coal-stripped mountains of Kentucky. Also schooled on the streets, he grew up in Lexington as “Little Crow,” younger brother of Crow, his brother Amos. He’s stubborn about everything—my son and I agree after my father puts up a ruckus about changing his pullover before we go out to lunch.
What I realize is that my father’s personality and training combined to extend the truth—to be hyperbolic—to create a dramatic rendering of a moment or memory. In the 1930s, my father’s father left his family, a combination of alcoholism and shame at not being able to find work in the Depression. So image prompted my father from an early age—poor boy would exceed expectations and make good. It propelled him forward—to graduate high school (something none of his brothers did), determine his way through law school, build a reputable life.
As family members, we used to joke that he told and retold stories from his childhood or travels so many times in so many different ways that he no longer knew what version was the truth. But he was true to the moment in which he was telling the story—even if the details or events themselves changed to get at that truth. Was he telling fictional truth? Truthful fiction?
Now dementia places him in an ever-changing moment and he lives there. And that is the truth I now live in too.
The image was clear. When I stepped into the moment it offered, details and the story emerged. Did the moment happen? I think so. Are the details accurate? They feel right. The story true? My sense of it is true.
More images—My brother’s rust-colored 1968 Oldsmobile Cutlass sitting on the slanted driveway humming, the gearshift so tall, I felt I had to reach up for it to drive.
A white 1964 Plymouth station wagon. I sit in the very back—beyond the two rows of red bench seats—to finally get away from everyone and read.
The stupid handmade wood trailer my father built and then backed into a utility pole—his anger at us for not warning him.
The family not talking about the Vietnam War at the dinner table.
White concrete and my father in a dark suit in the hot sun being handed an award for his efforts to build a new YMCA swimming pool.
I try to remember what happened in our family—and what I recall are details and images, moments not memories. Maybe we have always had a family dementia—and now my father is just manifesting it, though his mother had dementia long before we called it that.
I have a photograph of a stairwell—an iron railing and a set of concrete steps—taken by an artist friend many years ago. The image depicts the moment where in shadow the railing to take one up the stairs and the railing to go down them seem to meet. Of course, the connection is not possible. I’ve been on that stairwell many times and I know there is a gap, the width of a concrete stair—at least three maybe four feet—between the two railings. But image joins them and I believe what I see. The image convinces me.
My heritage and the links to all I am are somewhere in my family images. My father’s legacy is the lore that bridges the gaps and I incorporate into my being. If I see myself shaped by images as much as experience, what does that mean?
We paint valentine cards at WindChime. We gather around several tables to work. Vicki is easy, we give her a card, a plastic cup of blue paint, the color of deep ocean water, and she gets to work—dot, dot, dot, across the page. She fills the card with blue dots and then inexplicably she balances the blue with valentine red dots also across the expanse of the card. The effect is visually striking—the image, a code indecipherable but engaging. She does not know why she paints dots or what they say or mean, but she steadily moves forward until for her the card is done.
Others need help. May uses the same blue color as Vicki and with a brush, she writes “love to Mom and Pop” and puts the card aside. I don’t know if she is signing the card—is she the Mom of Mom and Pop or she is writing to Mom and Pop? I ask her if she’d like to place something on the front—a heart perhaps for Valentine’s Day? She cries. “It’s stupid,” she says, “to create a valentine for two people who are dead. Everyone is gone.” She begins to list the names. I wait, not sure what to say. I tell her my father is also the only one alive in his family, and we like to say his orneriness is what has gotten him this far. She laughs. You never know about transitions—where the conversation will go next. “He’s a smart boy,” she says. “I’ve seen him in action before.” Then she smiles. The sadness has passed. I make a red heart for her and then smudge it with the ocean blue paint and a spot of purple to give it dimension and depth.
“Let’s do modern art,” I say. “What do you think?”
“Fine, just fine,” she says. All she wants is a pen. “Love to all,” she writes at the bottom of the card.
For the person with dementia, life occurs in the immediate moment. Success in dealing with sufferers, like my father, is linked to how well the listener can register the moment and respond to it. When I follow his image or moment—as he sees it or describes it—I can still genuinely engage with him, know him, be with him.
My father sits at the table with Pam. I ask him if he wants to paint. I hand him some Q-tips and a blank card. His painting is writing sayings inside and outside the card. Every time he stops I tell him—make another. He does this until he gets tired. The cards say (all in valentine red paint):
Love is in the glow of heart.
Love is here. All you have to do is give it away.
Love is always found—if your eye is pointed right.
Love is always found first. If the heart sings, so can U.
He understands the essence of what we are doing—he adds red hearts and cupid arrows to the love messages—then he asks, “Where’s the boy?”
“Which boy?” I say—never sure if he means my brother or my son or someone else.
“Your boy.”
“Back at school,” I say.
“You mean in California?” The way he says it lets me know that for him California is an image—not a place, not where he lives.
“Yes,” I say then wait for the next moment to begin.
