After a woman’s son-in-law contracts amyotrophic lateral sclerosis, she tries to help the family, but the burdens of caregiving take her relationships to the breaking point.
Kindergarten teacher Colleen Gallagher, 53, is glad to help out when her daughter Sandy’s husband, Tony, gets a fatal diagnosis: ALS, aka Lou Gehrig’s disease. With a newborn, a toddler, a high-pressure job and Tony’s medical procedures to manage, Sandy needs all the help she can get. Colleen is all too familiar with being a young widow left to raise small children on her own; her husband died in a car accident when Sandy was 5. Though Tony’s family and friends start out with optimism and good intentions, tempers are soon frayed and patience worn out by the constant demands of caretaking. Sandy is often angry and resentful; Colleen feels like a slave. In the end, the survivors will have to go on with their lives. MacDonald (co-author: The Quiet Indoor Revolution, 1992) gives an unflinching portrait of dealing with a debilitating chronic illness: the expense, the logistics, the red tape, and especially the brutal, exhausting, undignified truths of nursing: “None of the caregivers’ manuals mentioned the orange shit that oozed out Tony’s rectum only half-way so that I had to dig out the rest as I wiped his butt.” The characters have a maddening way of making things more difficult for themselves; despite Tony’s wealthy parents, all the household DIY chores—scraping plaster, sewing drapes, cleaning gutters—for some reason fall to Colleen. But it’s really health care that doesn’t make sense. Tony’s doctor recommends a life-prolonging feeding tube. Why? “Because doctors love technology. Also, she doesn’t have to live here,” a nurse explains. Commenting on Tony’s feeding chair, she continues, “When I started in this profession, you never would have seen equipment like that in a home. It doesn’t belong here.” MacDonald saves her debut novel from being too didactic by her well-rounded characters and Colleen’s complex, thoughtful responses to the untenable situation.
An affecting, deeply honest novel; at the same time, a lacerating indictment of our modern health care system.