When I picked up THE MADONNAS OF LENINGRAD last week, I wasn’t expecting to read a novel about mental illness. I was expecting to read about life in Russia during WWII. I got both.
Gorgeously written, the novel shifts back and forth between the present day in America and wartime in Leningrad. But these shifts aren’t merely the author’s way of telling the story; they mirror how life is experienced by Marina Buriakov, the elderly protagonist whose Alzheimer’s disease relentlessly pulls her from the present into the past.
It seems odd to me, but I rarely hear Alzheimer’s discussed as a mental illness. Because it’s a disease that tends to strike people as they get older, there seems to be less stigma surrounding Alzheimer’s, more acceptance of it as a neurological disease than conditions like schizophrenia or bipolar disorder. (Or maybe it’s just that, in our culture, we expect older people to break down, and we don’t pay that much attention.)
But take a look at the Alzheimer’s Association’s description of the symptoms of the disease and you’ll see how closely it parallels the symptoms of psychosis:
The most common early symptom of Alzheimer’s is difficulty remembering newly learned information because Alzheimer changes typically begin in the part of the brain that affects learning. As Alzheimer’s advances through the brain it leads to increasingly severe symptoms, including disorientation, mood and behavior changes; deepening confusion about events, time and place; unfounded suspicions about family, friends and professional caregivers; more serious memory loss and behavior changes; and difficulty speaking, swallowing and walking.
Living in the past means living in another reality. That alternate reality might not be as shocking to others as an invented reality based on hallucinations and delusions—there is, after all, some basis in fact for Alzheimer’s-induced visions—but it separates people from their loved ones nonetheless.
For the spouse of someone suffering from Alzheimer’s, life becomes a lonely road.
There are many heartbreaking moments in THE MADONNAS OF LENINGRAD. Wartime deaths, separations, and starvation juxtaposed with incredible moments of loving self-sacrifice. In the present, a mother who doesn’t recognize her child, an elderly woman who wanders away into the night.
For me, though, the most wrenching part of the novel is a small section told from Marina’s husband’s point of view.
In this chapter, Dmitri is awakened in the middle of the night by his wife’s confusion. No matter how much he tries to comfort her and explain where they are, her mind can’t hold his answers, and she keeps asking to go home.
He is so tired. His eyes are leaden, and his mind is swimming in deep, heavy water. He answers her questions, but each one costs him an effort. Sometimes it is more than he can bear, this repetition, over and over, of the same questions, the same answers, as though their lives were a battered phonograph record with a hundred skips and they will never get to the end of it…
“Marina, you have to sleep now.” He feels his eyes stinging with frustration. “I need for you to help me. Do you understand?” In the half-light, their eyes meet. What he finds there is her, but also not her. Her eyes are like the bright surface of the shallow water, reflecting back his own gaze. Something flutters and darts under the surface, but it might be his own desire, his own memory. He is, he realizes, probably alone.
This passage affected me deeply because one of the things I remember most about my husband’s breakdown was the oddly disconnected look in his eyes. His pupils were large and unfixed, focused on an internal landscape I couldn’t share. No matter how hard I tried to coax him back to reality, the waters separating us were too wide. He couldn’t swim to shore.
And this, I think, is the tragedy of being married to someone in the grips of serious mental illness. The loneliness of it, the desire to connect with someone who’s just not there.
My husband and I have been very fortunate that medication and therapy have restored John’s grip on reality. As Alzheimer’s—or any untreated psychotic disease—progresses, the most you can hope for are fleeting moments of clarity and recognition. The most you can hope for is a brief moment when you will not be alone.
A couple of posts ago, I wrote about my anxiety about the upcoming birth of our child triggering a return of John’s psychosis. Talking about my concerns the other day with John and our therapist, I realized what’s underneath them: the fear that I will be alone during one of the most terrifying, most painful, and most meaningful moments of my life.
Getting to the root of my fears always helps to alleviate them. Sharing them helps, too, because it gives my husband a chance to support me right now, here, in the present.
And it shows me that, much as I might fear it, for today, I’m truly, truly not alone.