Life in the land of Alzheimer's

Lauren Kessler was still struggling to deal with her mother's death from Alzheimer's when she went to work for minimum wage at a care center for those with the disease.

The months she spent on the job were eye-opening for Kessler, the director of the graduate program in literary nonfiction at the University of Oregon.

Her book about the experience, "Dancing with Rose: Finding Life in the Land of Alzheimer's," is not an expos&

233; on elder care abuses. Instead, Kessler found that the center's residents were exhausting to care for, but also endearing, spirited, difficult and funny, with unique personalities. Despite rapid turnover, low pay and painful home lives, the women working there truly cared for their charges.

Kessler said when her own mother had Alzheimer's, she was blind to how much of her mother's personality still remained.

"She wasn't recognizable to me. When I started working at the Alzheimer's care facility, the experience from day one was different. They were who they were at that moment in front of me," Kessler said. "I was not missing who they were. If they were tapping a foot, enjoying a meal or hugging each other, that's what I saw."

With the residents unable to remember much of the past or project into the future, she learned to live in the present with them.

Kessler said she found that figuring out how to comfort, calm and care for each person was an intellectual and emotional challenge that was deeply satisfying.

Although she came to love her job, Kessler, in her book, doesn't gloss over how demanding and exhausting the work is for caregivers.

These are the chores just one caregiver must accomplish during a shift: wake up, clean and dress 11 people; wash, dry and fold five loads of laundry and put the laundry in the residents' rooms; serve breakfast to 11 people; hand-feed three people; clean the kitchen; wipe down and clean tables; shower two people; toilet eight people three times; serve lunch to 11 people; hand-feed three people; clean the kitchen; wipe down and clean tables; vacuum the carpet; and take out the garbage collected from 11 rooms and the kitchen and take it out to the dumpster.

None of that includes the extra work that comes when a resident's diaper leaked during the night, or a person becomes agitated and has to be reassured again and again.

Kessler said she was shocked not only by the amount of work each person was expected to do, but that the caregivers could give so much of themselves despite their often chaotic lives.

"The work was very hard, physically and emotionally.

"For them and for me, it satisfied something deep inside of them. Some of them have to deal with raising their grandkids because their kids are meth addicts," Kessler said. "But these are the people who never walk by a resident without putting an arm around the person or giving a hug. They have a deep sense of caring."

Kessler said she hopes her book will help others appreciate the people, mostly women, who work not only in Alzheimer's care centers, but throughout the care industry for elders.

In the book, she describes how difficult life is for women who are struggling to find adequate child care for their kids, who need food stamps even though they work 40 hours a week or who have to care for other relatives when their shifts end.

Kessler related the story of Inez, whose husband needs a wheelchair because he has multiple sclerosis.

"Last year he had a heart attack. He hasn't worked in five years. Inez, at $7.25 an hour, is the family breadwinner," she writes.

For people with loved ones who have been recently diagnosed with Alzheimer's disease, Kissler said she doesn't expect them to be happy about the diagnosis. But she said people with the disease are not walking zombies.

Much of their personalities remain, and they can still enjoy touching, holding hands, laughing, dancing and listening to music.

As she writes in the book, "How little we all know about the experience of this disease. How surprised we are to learn life doesn't end when this disease begins."

Kessler will be a guest on Jefferson Public Radio's Jefferson Daily program from 9 to 10 a.m. Thursday, June 14. She will be at Barnes Noble, located at 1400 Biddle Road in Medford, at 7 p.m. Thursday.

She is the author of five nonfiction books and her journalism work has appeared in "The New York Times Magazine," "Los Angeles Times Magazine," "O Magazine" and "The Nation." An excerpt from her new book is in the June issue of "O Magazine."

Staff writer can be reached at 479-8199 or

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