Finding Life in the Land of Alzheimer's
One Daughter's Hopeful Story
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Note to Readers: Finding Life in the Land of Alzheimer's: One Daughter's Hopeful Story was originally released in hardcover, audiobook, and eBook as Dancing With Rose: Finding Life in the Land of Alzheimer's.
Finding Life in the Land of Alzheimer's is a perfect title for a book as incongruously absorbing, as surprisingly lively and enlivening, as this one.
Even though Alzheimer's afflicts more than five million people in America, most of us have only a vague idea of what it is to actually live with the disease. Lauren Kessler writes: "There's so much research about the medical aspects of Alzheimer's, the decoding of the disease, the amyloid plaques and neurofibrillary tangles, the push to diagnose early, the race to develop drugs to cure it or at least mitigate the symptoms. 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" (p. 63). This book represents a major step toward correcting that imbalance, taking readers inside an Alzheimer's facility and offering an intimate sense of what daily life is like for those who suffer from Alzheimer's.
Motivated by a desire to learn more about the disease and to atone for her failures in caring for her own Alzheimer's-stricken mother, Kessler takes a job as an entry-level caregiver at Maplewood. She quickly discovers that it is an almost impossibly challenging job, both physically and emotionally—feeding, washing, lifting, toileting, calming, and comforting the many residents—and that the caregivers who do it are both underpaid and overworked. Most last only a few months, some only a few days. What Kessler also discovers is that those who suffer from Alzheimer's, while they may have lost much of their memory and other cognitive faculties, have not lost their humanity. While not sentimentalizing the residents, or ignoring how difficult they can be, Kessler nevertheless sees them, and introduces them to readers, on their own terms—not as shadows of their former selves or as zombielike victims of illness—but as individuals going through an important stage in their lives. There is the dapper but diaper-wearing ninety-year-old Hayes, who alternates between incessant calls for help and witty one-liners. When Kessler introduces herself to Hayes by asking "How do you do, Hayes?" he responds: "I do as I please" (p. 24). There is Eloise, far gone into dementia, for whom Kessler nevertheless feels a deep connection and who becomes Kessler's adoptive mother. And there is Marianne, a highly educated career woman who has convinced herself that she is either a professional on vacation or a still-working administrator. With her, Kessler employs validation therapy, participating in rather than challenging Marianne's fictional world. Doing so, Kessler feels, keeps the channels of communication open. "You are not only respecting the dignity of the other person. You are actually being forced to consider that a person with Alzheimer's might be doing important life work right in front of you" (p. 89).
This feeling of respect for the dignity and individuality of each resident at Maplewood suffuses the entire book. There are many moments of grace and humor and deep compassion in Finding Life in the Land of Alzheimer's. There are also moments of frustration, pain, loss, delusion, fear, and exhaustion, and these are rendered as honestly and carefully as are the experiences of joy and connection. Kessler gives us the whole picture of Alzheimer's, shattering any number of myths—about those who have the disease, their families, and those who care for them at facilities like Maplewood—along the way and replacing those misconceptions with all the depth, immediacy, and wisdom of lived experience.
Lauren Kessler is the author of five works of narrative nonfiction. Finding Life in the Land of Alzheimer's (published in hardcover as Dancing with Rose: Finding Life in the Land of Alzheimer's) was named one of the best books of 2007 by Library Journal, won the Pacific Northwest Book Award, was a BookSense alternate selection, and was excerpted in O, The Oprah Magazine. Her other books include The Washington Post bestseller Clever Girl and the Los Angeles Times bestseller The Happy Bottom Riding Club. Her journalism has appeared in The New York Times Magazine; Los Angeles Times Magazine; O, The Oprah Magazine; Utne Reader; and The Nation. She directs the graduate program in literary nonfiction at the University of Oregon and lives in Eugene, Oregon.
Q. How have readers responded to Finding Life in the Land of Alzheimer's? Have you received a lot of letters/e-mails from caregivers, family members, elder-care administrators? Do you have a sense that the book is having an impact?
The response has been overwhelming—hundreds and hundreds of e-mails and letters from nurses, hospice workers, health-care professionals, facility administrators, elder-care advocates, and the grandchildren, children, spouses, and friends of those who suffer from Alzheimer's. I can't tell you how gratifying it has been to see the book making its way in the world and making a difference in people's lives. Many people write that the book has helped them see the disease in a new way and helped them connect with those who have it. This is not something I was able to do when the disease hit close to home, with my own mother, so helping people be wiser and more compassionate than I was able to be at the time has meant a great deal to me.
Q. What was your writing process like for Finding Life in the Land of Alzheimer's? Did you keep a journal while you were working at Maplewood or did you do most of the writing after you left the job?
As a writer of narrative nonfiction it is vital to me for my work to truly be nonfiction—which means no fabrication, no fudging. All of the scenes I capture in the book, all of the action and dialogue really happened and happened just as I wrote them. I was able to do this because I kept a reporter's notebook with me at all times (in the pocket of my work apron next to my stash of latex gloves) and took notes whenever I could steal a second—during my breaks, during lunch, during any lull in activity or when the people I cared for were involved in an activity that did not involve me, like an exercise class or a sing-along. At the end of my more than four months of work, I had filled two dozen reporter's notebooks. These notes—as well as background research, interviews, and other material—became the book.
Q. Are there any special challenges or advantages in writing about a subject that is intensely personal and has a broad social significance as well?
I wanted to use the "small story"—my experiences as a caregiver in the Alzheimer's facility and my experiences as the daughter of a woman with the disease—to illuminate the larger issues around aging, around how we think about disease and death, and, most especially, how we approach the question of who we are when we no longer remember who we are. I think that using personal experience is the way to do this, to make a deep emotional connection with readers while also exploring broader issues. I loved writing about my work at the Alzheimer's facility because of how surprisingly vibrant and quirky the people I cared for were and how calm and compassionate my fellow workers were. There was drama every day. There were lessons to be learned every day. It was a privilege to be part of that world. It was much, much harder to write about my own mother and the difficult relationship we had. But it was part of the story. It was the reason the book was written, the reason I took the job . . . so it had to be part of the project.
Q. Are you more at peace with your mother, and your experience of trying to care for her, after writing this book?
At peace, not exactly. But that experience led to my taking a job as a caregiver which led to the book. And the book has helped other daughters do what I couldn't do at the time, to connect with and spend quality time with their ailing mothers. So I am glad to have spun a little gold from that straw.
Q. You list many of the problems that we as individuals and as a society face in dealing with Alzheimer's: understaffing, undertraining, low pay, and high caregiver turnover at elder-care facilities; undervaluing the elderly; fear of aging; and fear of death. Do you see progress happening in any of these areas?
I see a growth of what is called "person-centered care," which looks at people as individuals not walking diseases. I see the design and construction of better environments for those with Alzheimer's. I see the continued hard work of advocates and ombudsmen to improve care for the elderly. But I also see a culture obsessed with youth and terrified of aging. I see a culture that somehow doesn't believe that death is part of the "great circle of life." Huh? As long these values persist, and as long as elder care is a mostly for-profit industry and Americans do not have guaranteed health care, I am not sure we will make much meaningful progress as a society. As individuals, though, we can make meaningful progress if we learn to look at people with Alzheimer's—or any aging or ailing person—for who they are rather than who they no longer can be.
Q. What changes would you like to see in the ways Alzheimer's sufferers are both perceived and cared for?
I would like people to see the humanity and individuality of those who have Alzheimer's. I would like people to understand that we humans are more than the sum of our remembered pasts. Those with Alzheimer's are not empty vessels. They are not shells. They are living, breathing women and men who experience joy and sadness, friendship and loss, even romance. They can be carried away by music. They can be amused by the antics of a puppy. They live life. Just because they don't remember doesn't mean they don't experience.
I would like to see free or affordable adult day care available for those caring at home for relatives with Alzheimer's. You cannot—and should not—do that job 24/7. You will not do it well. You will endanger your own health and the health of the person you're caring for. I would like to see every care center incorporate the design features we now know enhance the quality of life for those with the disease—from natural lighting to access to outdoor spaces to broad corridors. I would like to see those who care for the aging and elderly be paid a living wage and be valued—celebrated, honored—for the work they do.
Q. You suggest in the book that Western medicine is slowly relearning the wisdom of the body. What hopeful signs do you see in this regard?
The fields of complementary, alternative, and holistic medicine are booming in the United States—from acupuncture to aromatherapy, from herbs and nutrition to yoga and meditation. We are wonderfully complex beings—mind, body, and spirit entwined—and we in the West finally seem to be awakening to this. In the book, one of the foremost academic researchers in the Alzheimer's area compares the experience of the disease to the experience of Zen enlightenment. This is enough food for thought that one wouldn't go hungry for years!
Q. Is the validation therapy you employed at Maplewood gaining ground among Alzheimer's caregivers and the medical establishment?
Not fast enough. A man wrote to me a while ago after finishing the book. His mother had Alzheimer's, he told me, and he was angry and frustrated because he had to keep reminding her, every day, that her husband was dead. She would start talking about her husband as if he had gone out to get the newspaper or was in the next room, and this guy, the man who wrote to me, was just irate. He felt it necessary to correct her, to tell her how mistaken she was, to inform her, every day, that her version of reality was wrong. Wow. Personally, I think it was a blessing that this woman forgot her husband's death. Why not leave it at that?
I think family members have the most difficulty with validation therapy. They want to hold on to the before-Alzheimer's version of their relative, the one who remembered everything. And so they correct and correct. I did this with my own mother. I couldn't help it. Or so it seemed at the time.
The medical establishment, I think, is moving more and more in the direction of validation therapy. Institutional caregivers ought to learn about this in training. Most of them don't. But many of them practice it anyway, as I did, by intuition.
Q. What are you working on now?
They say the two worst times in a woman's life are when she is thirteen and when her daughter is thirteen. Well, I have a thirteen-year-old daughter. The book I'm now working on, which I am calling Something Unpredictable is about the vitally important, deeply conflicted relationship between mothers and their teenage daughters. Mother-daughter identities are enmeshed and interwoven, yet at the same time need to be separate and distinct. No wonder that there is no other relationship that veers so sharply between intimacy and distance, between love and hate. I am in the thick of it. I am using this personal experience as a springboard to explore what many believe to be the most primal relationship we have, the most significant of all intergenerational connections. I am using it to explore—with my daughter's help—the vibrant, dynamic, scary culture of today's teen girls. And I am using it to get closer to my own child, to create the kind of bond between us that I didn't have with my own mother.
- What are some of the most touching moments in Finding Life in the Land of Alzheimer's? Why are these moments so emotionally powerful? What effect did they have on you and how you react to people with Alzheimer's?
- Kessler's writes: "The myth is that families dump their relatives in institutions like Maplewood. The reality is that the decision is an agonizing one frequently made after extraordinary, often long-term, efforts to care for the person at home" (p. 16). What other myths does the book shatter? How does Kessler manage to give readers a more real—and more human—picture of the Alzheimer's experience?
- Kessler says that she has come to think of Alzheimer's, "despite its obvious horrors, as a disease of freedom" (p. 224). What does she mean by this? In what ways is Alzheimer's freeing? What does having Alzheimer's allow people to do that they could not do before they had the disease?
- Perception plays an important role in the book, and Kessler demonstrates a rare ability to drop her preconceptions, both good and bad, to see what is really there. What is the value of such clear seeing? What does it enable Kessler to see that others might miss?
- Kessler says throughout the book that she was motivated to work at and write about Maplewood in part to find redemption for what she sees as her failure to care for her own mother when she was diagnosed with Alzheimer's. Does she find this redemption? What does she learn about herself and her relationship with her mother over the course of her time at Maplewood?
- When Kessler tells Hayes that she is "changing him," he replies: "Changing me into what?" (p. 134). What are some the other intentionally or unintentionally funny moments in the book? What effect do these moments have on Kessler and on her readers?
- In what ways have your views of those who suffer from Alzheimer's—as well as those who care for them—been changed by reading Finding Life in the Land of Alzheimer's?
- Near the end of the book, Kessler watches a documentary about Alzheimer's in which a woman says: "I'm losing my mind. . . . But the essence of a person is their heart, isn't it?" (p. 223). What experiences in Finding Life in the Land of Alzheimer's would support this assertion—that it is the heart, not the mind, wherein our essential nature resides?
- In his blurb for the book, David Shenk writes that "It takes a special quality to turn a subject this agonizing into an absorbing read, and this book has it." What is that "special quality"? How does Kessler make her book such a joy to read?
- Kessler points out that most of us avoid thinking clearly about our own old age and dying. How has Finding Life in the Land of Alzheimer's affected how you approach these issues in your own life?