Love in the Time of Caregiving: A Tender, Painful Memoir

Article excerpt

"On a moonless summer night my husband fell 10 feet from a sleeping lofi to the floor and did not die.

"He did not die, though he was 75 years old and the accident happened in a remote seaside cabin inaccessible by road, on a Maine coast island that has no doctor on call, much less a hospital."

Those are the opening words of To Love What Is: A Marriage Transformed (Parrai, Straus and Giroux), a passionate new book of uncompromising honesty by best-selling author Alix Kates Shulman (Memoirs of an Ex-Prom Queen). Shulman intertwines the personal case study of her frightening, frustrating, hopeful and often funny career in caregiving for her braininjured husband, Scott York, with the tale of die tìiree times tiiey fell in love.

Alix and Scott's story of late-life love burgeoned a half-century ago, when the pair, he age 20, she 17, met as students in Cleveland. Some dates, a motel room, departure for college - then 34 years would pass, including marriages and children for each of them, before they would meet and love again. That was in the 1980s, and tiieir ensuing 20 years of relative bliss - interrupted by Scott's heart attack in the 1990s - anticipated die growing incidences of rekindled romance in the age of longevity that are being documented in books, such as Connie Goldman's Late Life Love and, with increasing regularity, in the "Vows" column in the Sunday New York Times.

Their third time in love would come in the wake of Scott's devastating mishap in the cabin he'd built on the Maine shore on July 22, 2004. First, though, the accident would become the ultimate test of theindevotion. Shulman recounts her confrontations with the hard knocks of spousal caregiving after they returned to their condo in New York City. She would pore over the Internet for answers; referee disagreements among doptors and nurses over Scott's medications and care; and constantly find herself searching for new homecare workers who would stay despite Scott's abusive, obscene and sometimes violent outbursts - behavior that often results from the type of brain injury he suffered.

Although not a scholarly book, To Love What Is allows readers to learn along with Alix about the science of the brain and professionals' many insights about caring for someone who has brain damage. Reading the classic text of family care, The 36-Hour Day by Peter Rabins and Nancy Mace, brings Alix knowledge and its accompanying relief. A geriatrie social worker assures Alix that her goal of finding a reliable homecare aide is not a hopeless ambition: "It's only a matter of finding the right person."

Incredulous at this response, Alix argues that Scott's screaming and cursing drives away everyone. The social worker persists: "He doesn't curse at his friends, does he? I bet he doesn't scream when he's with his family . . . No, you just have to be patient until you find the right person." And Alix does - and does again, when that aide moves on.

In her first year of caregiving, convinced that her once-energetic husband would only fade from inactivity, Alix takes every opportunity to force his body and mind into action. For medical appointments, she eschews taxis for the subway, sometimes insisting that nondisabled riders give up designated disability seating for him. She makes a daily bargain with Scott, who is a retired businessman-turned-artist, that he must spend at least 10 minutes trying to draw, even if he merely sits in front of his tablet and, perhaps, scribbles a bit. …