Oregon writer Lauren Kessler first learned about Alzheimer's by watching her mother's decline from the disease. Several years later, she signed on as a minimum-wage worker at a residential memory care facility, where she did the grunt work and the literal heavy lifting of Alzheimer's care -- bathing, dressing, toileting and feeding 11 residents for eight hours at a time. She chronicled her experience in Dancing With Rose: Finding Life in the Land of Alzheimer's, and she'll be reading at Auntie's next Thursday.
Kessler says she knew she wanted to write about Alzheimer's after her mother's death. She observed the residents in the facility for a time and wrote a cover story for the Los Angeles Times Sunday magazine in 2004, but she still felt like something was missing. She noticed herself keeping an emotional distance from the residents, something she realized she had done with her mother as well.
"From the outside, I did what a good daughter with three kids at home would do," she says of the time spent caring for her mother. "But from the inside, I knew that I wasn't there emotionally. And that's exactly what I did for the magazine piece: I was actually repeating a pattern of emotional detachment. I'm comfortable as a third-person observer, so I did the story that way, as a journalistic observer."
And thus was born the idea of going to work in the facility she calls Maplewood. "It was kind of an act of contrition," she says. "If I couldn't do it for my own mother, emotionally, maybe I could do it for somebody else's mother."
& lt;span class= "dropcap " & S & lt;/span & cience has told us a lot about the physiology of Alzheimer's, about plaques and tangles in the brain and interrupted neural pathways, but it has revealed little about how those with the disease -- or any form of dementia -- experience life. And this is what's so different about Kessler's book: It's one of the few portraits of people with Alzheimer's that sits with them long enough to get a glimpse into their world.
The experience of spending so many hours surrounded by dementia changed Kessler's view of those with the disease. "I am absolutely convinced beyond a shadow of a doubt that we are more than the sum of our remembered past," she says. "Because these folks I worked with -- there's no doubt in my mind that they were people, fully functioning personalities."
Family members know what has been lost to Alzheimer's and grieve that loss. It's disconcerting to see a parent or a spouse or long-time friend turn into a stranger. And yet something of the original personality remains, Kessler says.
"I believe we have a core or an essence," she says. "And I could see that [in the people I worked with] because I wasn't their daughter. As the daughter or son, you see what's missing. You know what's lost, what's not there. That's the wound you carry with you. But I didn't carry that wound with these people."
The book's title refers to a resident Kessler calls Rose, one of the most severely demented people in the facility to still be ambulatory. (All residents' names were changed.) Rose always seemed totally unreachable, and yet one day Kessler was able to engage her by dancing with her to the music of My Fair Lady.
"That was my major 'ah-ha' moment," she says. "It was more of a breakthrough for me because Rose was so severely demented, and because I was scared. Rose, when she walked through the room -- you felt like she was in a different movie. So to have connected with her in such a surprising way -- it was the moment when I realized that even with someone who was as far gone into the disease as Rose was, there was a way of connecting. There really was life there."
& lt;span class= "dropcap " & T & lt;/span & he hardest aspect of writing the book, Kessler says, involved baring her own flaws and admitting that she -- with her Ph.D. -- might be unable to do this job that doesn't require a high school diploma. She is unflinching in her bluntness about the difficulty of the job.
The book also raises plenty of questions about the lack of value our society has for those who care for our most vulnerable members. "At that time the job was the most difficult part of my life," says Kessler. "Another 'ah-ha' moment for me was discovering that for a number of the women workers, their lives were so difficult and so chaotic that the work part of their lives was actually the least stressful. They would leave the eight-hour shift, get into a junker car, go home to a Section 8 apartment where possibly their boyfriend had just ripped them off."
& lt;span class= "dropcap " & K & lt;/span & essler says that working at Maplewood and writing the book were cathartic, but she still hasn't forgiven herself for being so distant with her own mother.
"I'm not a very forgiving person," she says with a somewhat rueful laugh. "Yes, I do feel better having made it, but I'm not yet willing to give myself the break that says you did the best you could under the circumstances. But I more fully understand why I created the distance I did.
"The part of me that feels good is the part that hopes the book reaches people at a time when they need it," she says, "when they need to read that there is life in the land of Alzheimer's. To help other sons, daughters, granddaughters to do a better job -- that would make me feel really good."
Lauren Kessler reads from Dancing With Rose on Thursday, Aug. 2, at 7:30 pm. Free. Auntie's Bookstore, 402 W. Main Ave. Call 838-0206.