Counting Backwards

The novel opens at its endpoint. Addie sits at the edge of a bed watching her husband Leo die, hooked up to a high-flow oxygen tank in accordance with his Do Not Resuscitate directive. A hospice nurse instructs her to administer morphine if he shows signs of suffering. Addie tells Leo she loved him more than anyone or anything, already slipping into the past tense though he is not yet dead. The narrative jumps back roughly two years to trace the unraveling that brought them here.

Leo, a medical researcher specializing in autoimmune disease, begins experiencing vivid hallucinations from their New York City living room window at night. He sees Mahatma Gandhi stirring lentils, a theater troupe performing Shakespeare, and the Virgin Mary nursing Baby Jesus. He recognizes the visions as unreal, and he and Addie joke about them. Leo documents each hallucination in a small notebook in pencil and self-diagnoses Charles Bonnet syndrome, a condition in which the brain generates images to compensate for failing sight, attributing it to macular degeneration. His ophthalmologist, Sam, finds no evidence of macular degeneration and recommends Leo see a neurologist.

Addie, a collage artist represented by the Sandstone Gallery, delivers her final pieces for a solo show to Sheila, the gallery's owner and curator. The collages incorporate Leo's hallucination imagery. Meanwhile, small cognitive irregularities accumulate. Leo refers to the ATM as a "money machine" and cannot figure out how to turn on his laptop. Addie records each incident in a notebook. A CAT scan and MRI come back clean. The neurologist recommends a neuropsychiatric physician, a specialist in brain disorders affecting cognition and behavior, but Leo resists seeing more doctors.

Addie secretly makes the appointment and manipulates Leo into attending by pretending he scheduled it himself. The neuropsychiatrist administers cognitive tests, all of which Leo passes, and finds no evidence of Parkinson's or Alzheimer's. He recommends returning in 12 weeks. Addie confides her worries to Z (Zachary), her best friend since college and a German Studies professor, who offers measured reassurance. But Leo's episodes escalate. He calls his sister Denise to ask if she knew their father died, though their father died 12 years earlier. He wants to rewrap already-opened Christmas gifts.

The crisis intensifies when Leo's university intervenes. His departmental secretary Thomas reports that Leo has been folding and refolding lab coats and sterilizing research microbes. The university places Leo on medical leave, providing his full salary for one year and nine weeks, after which he must retire at 54 with a drastically reduced pension. Addie forges his signature on the paperwork because his handwriting has deteriorated beyond recognition.

Leo's sense of reality fractures further. He accuses Addie of losing a little girl he believes she invited over. One night he tells Addie she is not his wife, that she looks like his wife but is not his wife. This is Capgras syndrome, a delusion that a loved one has been replaced by an impostor. Addie, increasingly unable to cope, throws his clothes into the hallway in a rage, and police arrive to file a domestic violence report.

Desperate and isolated, Addie calls the New York City Suicide Hotline, not because she is suicidal but because she has nowhere else to turn. She is referred to Marcy, a social worker in Brooklyn, who reviews Addie's notebook and delivers the diagnosis: Lewy body disease, a form of dementia marked by erratic decline and vivid hallucinations. Leo's youth and absence of tremors place him outside the standard diagnostic profile, which is why the neuropsychiatrist missed it. The disease follows an unpredictable course, but Marcy warns that Leo is approaching a steep drop. Life expectancy estimates range from 3 to 20 years.

Addie sends Leo to spend Thanksgiving with Denise in Cambridge, Massachusetts, but the visit ends in catastrophe. When Denise's adult son Joey enters the kitchen, Leo mistakes him for an intruder and stabs him with a kitchen knife. Joey's wound is minor, but Leo is hospitalized and placed in restraints. Addie secures a room at Dickerson House, an upscale assisted living facility costing up to $15,000 per month.

Dickerson House proves adversarial. The administrator Joan blames Leo after a sexual incident with his roommate and demands Addie hire a private nighttime aide at additional expense. When Z returns from six months in Europe, Addie tells him the full truth for the first time. His response devastates her: He frames his concern around humiliation, saying people with dementia are ridiculed and pitied. Their decades-long friendship ends.

Through Marcy, Addie discovers the Hotel Jacobs, a modest Brooklyn facility that charges roughly half of Dickerson House's rate. The administrator, Marty, arranges for Larissa, a Jamaican woman and experienced caregiver, to serve as Leo's aide. Larissa bonds with Leo immediately and transforms his room into a warm space. In a lucid moment, Leo tells Addie he is "with her now," pointing to Larissa. Addie asks Larissa to stay on indefinitely.

Addie rents a small apartment near her own building where Larissa and Leo live together. Larissa cooks, bathes and dresses Leo, and dances with him to Golden Oldies, becoming his world. Leo's decline continues: His speech reduces to garble, he eats non-food items, and he holds books upside down, reading reduced to muscle memory. Yet flashes of clarity remain. One day he points at Addie and tells Larissa, "Did you know that she is an artist?" Addie's finances grow dire; she borrows money from Denise and cuts her life to bare necessities.

Addie's art transforms through destruction. After Sheila rejects new collages as uninspired, Addie kicks over her supply boxes in a rage and begins building miniature box constructions from the wreckage: dioramas of disaster using burned and smashed dollhouse furniture. Isabelle Weber of the prestigious Weber Gallery offers Addie a solo show. At the opening, 11 boxes sell. Weber tells Addie she has "arrived," that she is "a somebody." Addie reflects that she is a somebody with nobody.

Leo develops pneumonia, the predominant cause of death for people with Lewy body disease. He comes home with hospice care. He rallies briefly; in one final flash of recognition, he strokes Addie's hair and kisses her as he once did. Then comes the vigil. Larissa sends Addie home to feed the cats, and while Addie is in the shower, Larissa calls: He has passed. When asked if she wants to say a final goodbye, Addie shakes her head. She has already said goodbye.

Addie gives Larissa a diamond necklace from Leo and 24 months of salary to fund Larissa's return to Jamaica. Alone afterward, Addie discovers three stapled pages in Leo's filing cabinet listing the Seven Stages of Lewy Body Dementia with small checkmarks in pencil beside the early symptoms. Leo knew his own diagnosis and chose not to tell her. She recalls him saying "I'm not ready" without ever asking what he meant.

The novel closes with Addie awakened by shattering glass. A squirrel has entered through a cracked window and knocked Leo's treasured objects to the floor. Her cat Roberta herds the squirrel out the window. Addie sits on the couch and tells the entire story to Roberta, because there is no one else to tell, mirroring Leo's years of garbled speech directed at those who loved him but could not reach him.