Stint at care facility enlightens daughter on Alzheimer's experience
L auren Kessler was a writer, a mother and a wife when her own mother developed symptoms of Alzheimer's. Like a good daughter, she found a care facility and visited her mother weekly. And if she was freaked out and a little scared of the vacant elderly woman Alzheimer's had turned her vivacious, vital mother into, well, who wouldn't be?
But after her mother died, Kessler was left with the nagging sense that she "had faced [her] mother's illness and her mother's death with a combination of fear and detachment, with emotions shut down, and, [she] felt, lessons unlearned."
So Kessler set out to make amends -- to her mother's memory and to herself. She decided to write about Alzheimer's. She didn't just read books and interview Alzheimer's researchers, though. Instead, she began to haunt "Maplewood," a lightly fictionalized Alzheimer's care facility. (Kessler, the director of the graduate program in literary nonfiction at the University of Oregon, also changed the names of some of the people in her book for privacy reasons.) She observed the residents and forged relationships with the staff. Ultimately, she applied for, and got, a minimum-wage job as a resident assistant at Maplewood.
The result is "Dancing With Rose: Finding Life in the Land of Alzheimer's," a riveting view into the world of people living with Alzheimer's.
"There's so much research about the medical aspects of Alzheimer's, the decoding of the disease . . . the race to develop drugs to cure it . . . . But there is little research, almost no attention given, to the experience of the disease, what day-to-day life is like for someone with Alzheimer's," she writes.
Through her work at Maplewood, Kessler discovers what the experience of Alzheimer's is like for the residents she cares for. She introduces us to people such as Hayes, whose dapper dress belies a man who needs to have everything he does, from getting dressed to chewing his toast, explained in minute detail. There's Rose, who wanders in and out of rooms, picking up anything that isn't nailed down and putting it down somewhere else. Or Marianne, a former university administrator who believes she is an administrator at Maplewood.
"She talks about the employees here. 'I value what they do,' she tells me, 'but I often find their productivity is lacking.' "
Because she didn't know the residents before they developed Alzheimer's, Kessler doesn't see them as diminished. She accepts them as they are (something she is saddened that she wasn't able to do with her mother), and, in writing about them in such a revealing, tender way, she imbues them with humanity.
But the patients are not all there is to Maplewood. Kessler also has a story to tell about her co-workers. In passages reminiscent of Barbara Ehrenreich's "Nickel and Dimed," she writes about the women who brave the physically and emotionally demanding work at Maplewood -- and do it for minimum wage. Each RA must care for 11 residents, some of whom can take care of their own basic needs, others who need everything done for them, from toileting to feeding to dressing. The women who work there must find child care if they have young children and reliable transportation to work. They often have unstable home lives. No wonder the average tenure for an RA at Maplewood is three months.
Kessler stays there for nearly six months. Far from being just a writer observing, she ends up becoming attached to the residents and staff in a lasting way. She attends funerals, meets family members, listens to problems.
"It's odd," she writes. "This is the most draining work I've ever done, but as I am drained, I am also filled, and I think the equation often works in my favor."
Miriam Wolf is a Portland writer.
