Many faces of Alzheimer's.
Byline: Karen McCowan The Register-Guard
There's good reason why Alzheimer's disease Alzheimer's disease (ăls`hī'mərz, ôls–), degenerative disease of nerve cells in the cerebral cortex that leads to atrophy of the brain and senile dementia. has overtaken cancer as the most-dreaded diagnosis among Americans age 55 or older.
The memory-robbing brain disease afflicts 10 percent of people living beyond age 65. The rate approaches 50 percent among those older than 85. By 2050, aging baby boomers See generation X. are expected to quadruple quad·ru·ple
1. Consisting of four parts or members.
2. Four times as much in size, strength, number, or amount.
3. Music Having four beats to the measure.
n. the number of Americans with Alzheimer's, to 16 million people.
But a new book by Eugene writer Lauren Kessler Lauren Kessler is an American author.
Kessler's novel Stubborn Twig received the Frances Fuller Victor Award for the year's best work of literary non-fiction. may take some of the terror out of that prospect.
"Dancing with Rose," which has captured national attention, depicts many people with the disease as continuing to enjoy ordinary pleasures in the present despite losing access to their pasts.
That's not what Kessler expected to find when she took a job as a caregiver at a Eugene "memory care" facility to better understand Alzheimer's. The University of Oregon The University of Oregon is a public university located in Eugene, Oregon. The university was founded in 1876, graduating its first class two years later. The University of Oregon is one of 60 members of the Association of American Universities. journalism professor, who directs the UO's graduate program in literary nonfiction, was researching a book on the subject. But her interest was more than academic. She'd yet to come to terms with her own mother's 1996 death from the disease, which she'd come to regard as "unremittingly bleak."
She'd even developed her own grim, unofficial staging of Alzheimer's:
Stage I: I forgot what I bought at the store for dinner.
Stage II: I forgot how to cook dinner.
Stage III: I forgot how to eat dinner.
While caring for other people with the disease, however, Kessler discovered something which buoyed her.
"The 'Aha!' moment of the book is that there is real life being lived by people who have this disease," she said in a recent interview. "It's very easy to miss this when it's your relative because - and this is what happened with me - all you can see is what's not there."
While feeding, cleaning and "toileting" residents with advanced Alzheimer's, however, Kessler was struck by what remained.
"Being part of their lives for eight hours a day, I was able to see their personalities, their daily routines, their friendships, their romantic entanglements, how they reacted to animals - the whole vibrancy of a life being lived," she said.
Animals, from birds to "a potty-trained llama llama (lä`mə), South American domesticated ruminant mammal, Lama glama, of the camel family. Genetic studies indicate that it is descended from the guanaco. ," were regular features at "Maplewood," the name Kessler gives the undisclosed Eugene care center where she spent more than four months pulling eight-hour shifts alongside other low-paid resident assistants. She uses pseudonyms This article gives a list of pseudonyms, in various categories. Pseudonyms are similar to, but distinct from, secret identities. Artists, sculptors, architects
The book provides a vivid overview of daily life in a care center designed to provide both socialization socialization /so·cial·iza·tion/ (so?shal-i-za´shun) the process by which society integrates the individual and the individual learns to behave in socially acceptable ways.
n. and safety for those with dementia. Its four "neighborhoods" all open onto a contained, outdoor courtyard. Each neighborhood has a shared kitchen and gathering area, surrounded by residents' rooms. The use of anxiety medications is low, Kessler said during a tour this week, because residents can wander without "feeling like every door they try is locked."
It's a book about the mostly poor, mostly female workers who make places such as Maplewood possible. Kessler writes with warmth about her mostly under-educated colleagues who endure terrible hours and low wages to perform this emotionally and physically demanding work. She makes clear why the caregiver turnover rate is so high that her four-plus months at Maplewood represented the longest tenure among the five resident assistants at her new-employee orientation. But she also makes clear how much these workers care about their sometimes demanding, exasperating clients. She notes, for example, that three of her fellow "RA's" showed up, unpaid, on their day off, to attend the funeral of a resident who died at Maplewood.
It's a book about the impact of the disease on family members.
"I think the disease is much harder on the families than on the people with Alzheimer's because - and I'm completely guilty of this myself - the whole thing becomes about you and what you've lost," she said.
That's part of the reason she became convinced that "a good Alzheimer's facility is probably better than most home care."
As a caregiver with "no emotional baggage" regarding the Maplewood residents she tended, she was able to accept - even admire - their resiliency in constructing a new sense of self that allows them to cope with their only-in-the-present lives. One resident, for example, is a former university administrator who views Maplewood as a retreat center for female executives - one where she has "an open-ended sort of position" as a manager.
Most of all, the book shines a welcome light on the humanity that transcends the disease.
Even the most severely demented demented - Yet another term of disgust used to describe a program. The connotation in this case is that the program works as designed, but the design is bad. Said, for example, of a program that generates large numbers of meaningless error messages, implying that it is on the brink , Kessler reports, still had distinct personalities, likes and dislikes, and "experienced things with intensity."
"You could see them fall into beautiful music and appreciate it like any other person," she said.
The book's title, in fact, is inspired by an eye-opening moment Kessler shared with "Rose," whom she'd previously known only as a shuffling, vacant-eyed wanderer. At the suggestion of another RA, Kessler asks Rose to dance after seeing her tap her foot to a Maplewood showing of the movie "My Fair Lady."
"She is - astonishingly a·ston·ish
tr.v. as·ton·ished, as·ton·ish·ing, as·ton·ish·es
To fill with sudden wonder or amazement. See Synonyms at surprise. - graceful as we start to waltz waltz, romantic dance in moderate triple time. It evolved from the German Ländler and became popular in the 18th cent. The dance is smooth, graceful, and vital in performance. ," Kessler writes. "I am not so graceful. I keep count in my head. ... Rose is a good dancer. I stop counting to myself. I close my eyes and let her lead."
The Chicago Tribune Chicago Tribune
Daily newspaper published in Chicago. The Tribune is one of the leading U.S. newspapers and long has been the dominant voice of the Midwest. Founded in 1847, it was bought in 1855 by six partners, including Joseph Medill (1823–99), who made the paper praised the book as "profound," The Los Angeles Times Los Angeles Times
Morning daily newspaper. Established in 1881, it was purchased and incorporated in 1884 by Harrison Gray Otis (1837–1917) under The Times-Mirror Co. (the hyphen was later dropped from the name). said it "turns our assumptions on their heads" and "O" magazine published a 5,000-word excerpt ex·cerpt
A passage or segment taken from a longer work, such as a literary or musical composition, a document, or a film.
tr.v. ex·cerpt·ed, ex·cerpt·ing, ex·cerpts
1. in June. It's also winning raves closer to home, from those who know its subject well.
"It's a tremendous book," said Frank Hales, executive director of the Cascade Coast chapter of the Alzheimer's Association The Alzheimer's Association, incorportated on April 10, 1980 as the Alzheimer’s Disease and Related Disorders Association, Inc., is a non-profit American voluntary health organization which focuses on care, support and research for Alzheimer's disease. . "In fact, Lauren will be the guest speaker at our Excellence in Alzheimer's Caregiving awards dessert Sept. 28."