My mother is standing in the doorway of her bedroom. One foot is covered by a sock patterned with colorful cartoon owls. The other is bare. The buttons of her nightgown are undone, although she’s attempted to refasten some of them, crookedly and without much success. The hair on the right side of her head is thickly matted with blood, and there is more blood smeared all over her face and neck. Behind her, the floor is littered with the contents of her wastebasket and laundry hamper. The covers have been pulled from her bed and lie in a heap.
“Hi, Kathleen,” I say. “It looks like you’ve been busy.”
“Well,” she says. “I was doing this.” She smiles cheerfully and waves vaguely around the room with one bloody hand, like Lady Macbeth doing the big reveal on a surprise home remodeling show. “They said I should.”
I close my eyes and repeat the mantra I employ for these occasions: Treat her the way you would want to be treated.
This doesn’t always work, but today, it does. I shepherd my mother into the bathroom and begin the process of cleaning her up. When she sees her reflection in the mirror, she gasps. “Look at that poor woman,” she says. Then she leans forward and addresses herself. “What happened to you?”
What’s happened to her is Alzheimer’s. Eleven years ago, at the age of 68, she was diagnosed. At the time, she was married to a man two decades her junior. My sisters and I hoped he would be able to care for her, and for several years, he did. Then, when he was hospitalized due to complications from diabetes, my mother came to stay with my oldest sister. It was supposed to be for a few days. But her husband never left the hospital, and she never went back to her home.
That was six years ago. My mother has now forgotten that husband, who she was with for more than 20 years, as well as our father, to whom she was married for 35 years.
She’s also forgotten her brother, who died when she was young, and her sister, who is still living and whose photo sits on my mother’s dresser alongside a photo of their mother, my grandmother. Sometimes my mother recognizes the photo of her mother. More and more often, she doesn’t.
Nor does she remember her children. I came to live here on my sister’s farm in very rural Maryland three years ago, when our mother underwent treatment for ovarian cancer and required additional attention. I stayed on so that my sister and I could share caretaking responsibilities. My mother spends every waking moment of her life with us. And she has no idea who we are.
Her disease presents numerous challenges. Today, it’s the tiny wound on her face that is the source of all the blood. More precisely, it is her inability to stop picking at the scab on the wound that’s the problem. Now that she’s cancer-free, my mother actually has no health issues apart from slightly-elevated cholesterol, for which she takes a daily pill. She also takes a blood thinner to prevent strokes. Because of this, even the smallest of cuts can bleed profusely and refuse to clot. The spot on her face is the result of her constantly worrying a small skin tag, which she managed to scratch off a week earlier and which she keeps reopening despite our best efforts.
As I wash the blood from her face, I see that there’s now a second small wound. I press a gauze pad against it and hold it in place as my mother protests.
“What are you doing?” she asks.
“You have a cut on your face,” I explain, as I have approximately sixteen-thousand times over the course of the past week. “And it’s bleeding because you keep picking at it.”
“I do not!” she insists.
I hold up her hand, which is still filthy with the evidence of her crime. The nails are caked with dried blood. “How do you think this happened?” I ask her.
“Oh no!” she says, gasping. “That’s terrible. Who did that?”
I’m already weary of the conversation, because I’ve had it many, many times already and know how it will go. I will explain to her that she has a wound, and that she keeps opening it by scratching at it. She will deny everything. I will clean her up, apply a new bandage, and take her into the living room to sit down on the couch and watch Sesame Street, the only show that holds her interest. I will ask her not to touch her face, and she will insist that she would never do anything like that. Within minutes, she will have pulled off the bandage and begun scratching at her face. This process will repeat itself over and over for the entire day, until both of us are exhausted.
As I clean my mother’s hands, I hear from the other room the sound of Donald Trump being sworn in as the new president of the United States. This blackens my mood even more. I am approaching the half-century mark, and this is not the world I expected to be living in. I think back to when I was 21, newly arrived in New York City, and marching in ACT UP protests because our government was actively trying to kill us. Many of us fought very hard to create a world where things were better. And we got it. I remember being 23 and lying in the bed of one of the architects of the gay marriage movement, holding hands while he said, “Someday, we will be able to get married.”
I did not marry him, but later on I did enter into a domestic partnership with someone else. We bought a house. I wrote books that were well-received. I thought I was happy. But ten years later, I realized that I wasn’t, and probably never had been. The relationship ended. The house was lost. The publishing world changed drastically, almost overnight, leaving me adrift professionally. And my mother got sick and forgot everything.
I’m not sure who I am now, or what happened to the world I and so many others worked so hard to build. It feels as if it’s all been swept away, or existed only in a brief, wonderful dream from which we’ve all just awakened. The likelihood that I’ll ever get to live in it again seems remote.
I finish cleaning my mother’s face and applying the first of what will be many bandages.
“You make everything so nice,” she says, and pats my hand. “You always know just what to do.”
“I try,” I say, gently pressing on a bandage that five minutes from now will be clutched in my mother’s hand after she pries it off. “Let’s go into the living room. Big Bird is waiting for you.”
She looks at herself in the mirror. “Are you coming?”
When there’s no answer, she shrugs. “Maybe her mother told her not to talk to strangers.”
“You don’t know her?” I ask, as I do every time she does this.
“I’ve seen her around,” she says. “But I don’t know who she is. Do you?”
I look at her reflection in the mirror. We resemble each other quite a bit, and sometimes looking at her makes me feel as if I’m looking at myself. I wonder if in 20 years I’ll be where she is now, having forgotten everyone and everything I know. Her type of Alzheimer’s is not hereditary, but that doesn’t mean I’m immune. Unlike her, though, I have no one who will care for me if it happens. I try not to think about that too much.
“I used to know her,” I say. “But that was a long time ago.”
“Maybe you’ll remember her name,” my mother says as she walks out of the bathroom. “Then you can tell me.”
Michael Thomas Ford is the author of numerous books in various genres, his most recent novel being the dark fantasy LILY (Lethe Press, 2016). A 5-time winner of the Lambda Literary Award, he is also the recipient of the James Duggins Mid-Career Novelist Award. Visit him at michaelthomasford.com.