The year 2018 was one of the rainiest on record for Asheville, North Carolina. The rain started in the spring and seemed to last all summer, day after day of it. The basement flooded, the roof leaked. The bright pink peonies in our front garden became so sodden that their heads grew too heavy for their stems. Stalks broken, and they finally gave up, bowing their heads to the earth in surrender. As the peonies were drowning, my mother was losing her mind. She had been losing her mind for quite some time, in small ways. Anyone could see that. After initially attributing her confusion to a hearing deficit, my father then blamed it on anxiety, but as he is highly skeptical of mental health disorders he might just as well have said that her humors were out of balance. To be fair, the symptoms of her decline were difficult to distinguish from her absentmindedness and general lassitude, at least until she started asking him where her husband was.
Capgras syndrome is a neuropsychological disorder characterized by the belief that a familiar person—usually a close family member—has been replaced by their exact double. It is hypothesized that people with the disorder recognize faces but are no longer able to access the emotional memories associated with the faces, resulting in a sense of unfamiliarity. The name Capgras refers to the French doctor who first documented the phenomenon almost one hundred years ago. The condition is sometimes seen in connection with psychotic disorders such as schizophrenia. Occasionally, a person might develop this delusion in the context of methamphetamine abuse. It is also seen in people with neurodegenerative diseases such as Alzheimer’s. For people with psychotic disorders, including drug-induced psychosis, antipsychotic medications may help to mitigate the delusions. For those with neurodegenerative diseases, there is no treatment.
Over the course of a rainy Saturday in June, I get the story from both of my sisters over the phone. Our parents were visiting our brother, Jim, at his farm outside of Charlottesville. From the farm, our mother first called Amy and then Elise and told them both the same thing: She was with a man who claimed to be her husband but was not her husband. They were staying on a farm with his son. Sobbing into the phone, she told them she was afraid and wanted to go home.
When Amy tells me the story, she speaks in short clipped sentences in an effort to banish the emotion from her voice. But she sounds scared too.
Elise sounds tired when she recounts the story. “Why the fuck did he have to take her to that farm?” She takes a hit from her vape and exhales but it sounds like a sigh. “I can’t deal with this right now,” she says.
I wait for my mother to call me but she never does. As I listen to the story told and retold by my sisters, I feel a creeping sense of unease, an uncanny feeling. What is unfolding feels eerily familiar to me.
In 1977, in the fall of second grade, I began to worry that my mother thought I was an imposter. I don’t remember what precipitated these thoughts but I imagined her suspecting that I had been replaced by something that looked identical to me but was not me—a double, or a sinister twin. My memories of that time have taken on the olive and gold hues of our house on Friendly Circle. They are, I admit, colored by emotion and blurred by the passing of time. But some have the crisp edges of yesterday and are so fresh I can smell them.
Whether cooking or reading a magazine or sitting at the kitchen table with her coffee and a cigarette, my mother seemed very far away. When she noticed me, she looked at me with suspicion. “What are you up to, you little devil?” she would ask, her eyes narrowing behind a cloud of cigarette smoke. I try, with little success, to stay quiet. Sitting in the front yard, I pick dandelions and count mosquito bites on my legs. On my dresser, I keep a small jar containing layers of colored sand that I made in art class. I look through my View Master wishing myself transported to a flat cheerful world of super-saturated colors. Yet the thoughts creep up on me; they persist and amplify, stalking me like a predator. If my mother thinks I am an imposter, what does she think happened to the real me? Does she think I’ve been murdered or kidnapped? Why isn’t she searching for me? Is she secretly heartbroken or has she forgotten about the real me? I long to tell her I’m still here.
Family members are advised not to challenge a person with the Capgras delusion. This may cause the sufferer more agitation. Instead, it is suggested that loved ones offer support, validate the sufferer and acknowledge their feelings.
My mother now believes my father disappeared and was replaced by a man who closely resembles him, the captain of a riverboat that she took down the Amazon twenty-five years ago.
“So this man is from Peru?” I ask her.
“Yes, I think so. I think he must have been born there.”
“His English is very good,” I say.
She nods. “I met him on the boat. He was always hanging around me.” In a conspiratorial whisper, she adds, “You know how men are.”
My siblings and I have been forgotten, wiped out of existence. Sitting on the edge of the sofa, hands placed primly in her lap, my mother shrugs her narrow shoulders and says with a smile, “I never had any children.” She recalls odd fragments of her past, like the white quilted blanket with a cross-stitch design of Bambi that my grandmother made for me. Yet these bits of information seem to exist in isolated pockets in her mind, separate from any idea of me. The daughter that was once incorporated into her psyche has vanished. There are moments when she seems to remember me, as if remembering a pot boiling on the stove— something trivial yet potentially dangerous. When she sees me now, she says, “Oh, it’s you.” She looks at me with suspicion and unease, not unlike how she has always looked at me, but now her distrust is intensified.
I don’t challenge her but I do ask questions. Sitting on my parents’ back porch, I wait until my father is safely out of earshot before I ask, “Has this ever happened to you before? Where someone went away and got replaced?” She takes a long time to answer. I look out over the tidal creek at the vibrant pink and gold of the sky at sunset. I tell myself her answer doesn’t matter and that my interest is only clinical. But another part of me hopes for a revelation.
“No…No, I don’t think so,” she says. Her gaze remains on the horizon. I resist the urge to clap my hands in front of her face, as if I could make her come to attention and snap out of it.
I am not afraid to ask questions now, but as a seven-year-old, I was terrified. I remember standing on a chair at the kitchen counter, helping my mother with dinner. She cooks pork chops in a skillet while I peel potatoes. The pork chops come packaged in long pink Styrofoam trays wrapped in cellophane. They pop and hiss in the pan. My mother warns me to stand back or I’ll get burned by the splattering grease, as her younger sister had when they were children. She puts her arm in front of my body in the same way she would when I rode in the passenger seat of her Volkswagen and she suddenly had to put on the brakes—as if her arm could hold me back from flying through the windshield.
I’m afraid to ask but I somehow find the words. “Do you believe I’m your daughter?”
My mother looks at me wide-eyed. “Why would you ask such a question?”
“I’m afraid you think I’m not me.” I feel the itch deep in my ear canal that means I’m about to start crying. I put my fingers in my ears.
She moves closer, peering into my face. “Well of course you’re you!” she says, her voice rising, her brow furrowed. Swatting my hands away from my ears, she asks, “Who else would you be?” But the way she stares at me makes me suspect she’s lying.
Family members are told to reassure the sufferer. Enter their reality and try to imagine how terrifying the experience is for them. Let them know they are safe.
My mother has settled into a kind of uneasy relationship with her new reality. She tells me sometimes that the imposter who cares for her is “a nice man” and “a good cook.” Other times, wrinkling her nose like a recalcitrant child, she says, “He’s old and he smells.” She consistently believes that he is trying to steal her money. Her husband, she tells me, ran off and left her. “I remember it,” she says. “I remember seeing him on the front porch. Talking to a woman.” Her voice falters and she looks to me for confirmation. I nod my head, encouraging her to continue. “He went with that woman.” Her lip pulls up into a sneer. “That slut,” she says. She can’t stop talking about “that slut.” Nothing we say can reassure her.
Returning to second grade after the Christmas holidays, I found relief in the familiarity of Mrs. Milner’s classroom: my sturdy wooden desk, sharpened pencils, fat gum erasers that crumbled when rubbed on paper. Reassured by routine and the safety of the familiar, my dread began to wane. Yet my mother couldn’t reassure me that she didn’t think I was an imposter. I never asked that particular question again but I did ask it in a different form many times and for many years to come. Do you see me? Do you understand? Am I okay?
For family members, it is of fundamental importance to remember that the Capgras delusion and other changes in personality associated with dementia are caused by changes in the brain and are not true indications of what the sufferer thinks and feels.
My mother sits on the floor in her living room surrounded by shoeboxes full of photos. Most of the photos are of her children, dating back to the early seventies—almost fifty years of Christmases, Thanksgivings, and birthdays. Some are candid shots—my sister Elise and I playing with our dogs in the backyard of our house on Society Street, my brother as a toddler wearing cowboy boots. There are not many photos of my mother. Chronically unhappy with her appearance, she would often excise her image from photographs using nail scissors. In some photos, all that remains of her is a disembodied arm or shoulder, a wisp of hair.
She shows me a photo of myself as a small child. I am about three years old, wearing only my underwear and one sock, holding a box of animal crackers. She holds the picture up to me and says, “Isn’t she cute? She used to stay with us.” When she looks at the image more closely, her mouth turns down and her brow furrows in disapproval. “Why is she only wearing underwear?” she asks.
I imagine her looking at this array of images and trying to put them in order, as one might put together a puzzle. But the map for how the images fit together has been erased. Instead, she arranges the photos into seemingly random piles and puts the piles into quart-sized Ziploc freezer bags. She gives me the bags, as if now that she’s organized them she never has to think about them again. I stuff them into the back of my hall closet and try to forget about them.
I sit with my father in our wood-paneled den while he watches Walter Cronkite on TV. My father liked the way Cronkite said, “And that’s the way it is,” at the end of every broadcast and I liked to sit with my father, even though I didn’t like watching the news. I am no longer so worried about my mother thinking I’m an imposter; that worry has faded and made way for other worries. Everything scares me. I wonder if this is the way it is now and the way it will be forever. When I try to fall asleep at night, my mind is crowded with monsters. I think about the Newsweek magazine I found lying on the coffee table, an image of faceless dead bodies on its cover. My mother said that the people were in a jungle in South America; she said the name “Jim Jones” like he was someone she knew.
Caregivers and family members are encouraged to recognize their own limitations and take time for themselves. Suggestions include taking a break when needed or joining a support group. Remember that Capgras is incurable; these problems cannot be fixed.
In the summer of 2019, Asheville got very little rain. I was assiduous in watering the pots of lavender and begonias on the front porch but one of the lavender plants succumbed and died of thirst. The other was somehow able to maintain its succulence, gray-green needles still lush and fragrant, stalks topped with purple bonnets. On a sunny weekend day in late summer, while tending to my plants, I get a call from my father. He tells me that my mother is starting an experimental drug called Pimavanserin.
“There’s a possibility it can help with Capgras,” he says. He pronounces it cap grass. This is the only way I have heard it pronounced. No one, it seems, uses the French pronunciation.
“That’s great,” I say. I come in from the porch and sit in my office. Opening my laptop, I enter “Pimavanserin” into Google as we speak.
“Only thing is, it has a black box warning,” he says, referring to the strict warnings mandated by the FDA if there is evidence that a drug poses a serious risk.
“What’s the warning?” I ask.
“Death,” he says. “But it’s incorrect and a blatant political maneuver.”
“Increased mortality in elderly patients,” I read from the NIMH website.
“It’s expensive,” he says. “About five grand a month. Not covered by Medicare.”
I don’t ask why he believes the warning to be incorrect or a “blatant political maneuver” and by whom. Democrats, most likely. There is a lightness in my father’s voice. He talks about his new dachshund and I tell him about a plumbing leak and the ridiculously high estimate we got to repair it—thousands of dollars for a job that ended up costing less than a hundred. He enjoys being outraged by things like this. We have a pleasant conversation and when I hang up I wonder if our joviality reflects a hope that the drug will work or a hope that the black box warning might be accurate.
Behind a package of light bulbs in the hall closet, I find the photos my mother gave me. I dump one of the bags onto the table in my office. I find several pictures of Amy as a baby, looking as if she had just been crying or was about to start. There are several out-of-focus pictures of her collection of Beanie Babies she must have taken herself. Tucked between these is a photo of my father in his Navy uniform, looking not much older than my daughter is now. I find a picture of me, my mother, and Elise when she was an infant. We are all sitting on the mustard yellow sofa in the living room of the house on Friendly Circle. My sister lies swaddled on my mother’s knees. I am laughing and reaching for something beyond the frame. My mother’s hair is cut short and she wears gold hoop earrings. Her arms look very thin and brown and are held tightly at her sides, with one hand on my infant sister, as if holding her in place. My mother stares off into the distance; she is smiling but she also looks afraid.
In the psychic economy, nothing is ever lost. We might think we are banishing unacceptable thoughts and impulses but they merely retreat underground. They resurface later in another form—at first unrecognizable but, if we look closer, we will see something familiar in the strange. We can’t escape ourselves. When I think about my experience in second grade, I wonder if I was sensing ambivalent feelings in my mother or if the ambivalence was mine. Or perhaps a more complicated and mysterious psychic interaction was taking place—a hall of mirrors in which we were both lost. I try to understand my experience but I have no way of knowing the truth. The mirrors are all broken now. My mother’s reality has become strange and impenetrable. I suppose that, for her, I am like a dream that upon awakening slips away and resists attempts at remembering. She is aware that something was there, but now it is only felt as a lack. I imagine her catching a glimpse of my reflection and, for a moment, recognizing the child she lost back in 1977. Meanwhile, I’m here—familiar yet unrecognizable—waiting to be found.