Saturday, March 17, 2012

Book Review: Dancing with Rose - Finding Life in the Land of Alzheimer’s

Overview
In "Dancing with Rose: Finding Life in the Land of Alzheimer's" by Lauren Kessler, Ms. Kessler takes work as a Resident Assistant in a care facility for people with Alzheimer's. Although Ms. Kessler starts out at the care facility with the intent to make posthumous peace with her mother while learning enough to publish a book on Alzheimer's, Ms. Kessler soon becomes enmeshed in the lives of her residents. She builds relationships, grieves at the loss of others, works to cater to each person's specific personality and desires, and ends up keeping the job far longer than she ever imagined.

Ms. Kessler, who began her journey with many pessimistic views on Alzheimer's given the poor relationship she had with her own mother when her mother had the disease, does an about-face. Her initial negative views on Alzheimer's change, as she begins to express the disease as a complex and unique condition requiring patience, understanding, compassion and adaptability from caregivers. She learns to work within its confines and bravely shares both her successes and failures with her readers.

The Characters
Ms. Kessler, the author of the book, is the main character and the one through whose eyes we get a glimpse at all the other characters She is an author, on a caregiving assignment in a care facility, observing and interacting with residents who experience the effects of Alzheimer’s. In addition, Ms. Kessler is a mom, holds advanced degrees, and lost her own mother to Alzheimer’s.

The other characters, as portrayed by Ms. Kessler, are fun and multidimensional. She makes it clear they are authentic people, living real lives; they just happen to live in a care facility because they need some assistance due to memory loss. Although there are quite a few characters Ms. Kessler makes reference to, for the sake of simplicity, these are the characters we found the most intriguing.

Ella
– A large and quiet woman, whose only interaction with Ms. Kessler, affects the author deeply.

Eloise – A kindly soul who loves hugs. She has a local daughter who seldom visits, and usually complains about her mom’s care when she does.

Frances “aka Calm Guam Frances” - A veteran resident assistant at the facility and Ms. Kessler’s trainer. Frances is an understanding woman, known for being calm, compassionate and keeping everything under control.

Hayes - A former engineer and tall, slender man, who is constantly cold. He is always dressed well thanks to his loving daughter and often asks, “What’s next?”

Jasmine – A hard-working, single, young mom, and trusted co-worker of Ms. Kessler, who is determined break out of her minimum-wage job to improve her life.

Marianne – An independent, “tall attractive, well-dressed woman” (p. 79) who “believes she is an administrator” at the facility (p. 85).

Rose – An unconventional woman who does exactly what she likes and treats all the other residents of the facility like one big extended family.

Alzheimer’s as Hopeful and Positive
Throughout the book, Ms. Kessler portrays Alzheimer's as a hopeful experience. Sometimes, she even poses it as a mere inconvenience. For instance, when Marianne forgets when lunch will be served, and has to ask again twice more, Ms. Kessler does not see this as problematic. She instead praises Marianne's former successes, "This is a woman who graduated from college in 1948, a woman who figured out how to be a feminist while Betty Freidan was still working it out. Does it matter really, that she forgets when lunch will be served?" (p. 91).

Even when Ms. Kessler has a negative experience with a resident, she doesn't let it frustrate her. In fact, she relies upon the many positive interactions with the other residents to outweigh the few bad experiences. At one point, when an especially challenging resident, Rose, snuck into Hayes's room and "smeared her greasy, cookie crumb hands all over" his bedding, Ms. Kessler is clearly agitated at the extra laundering that had to be done (p. 101). However, she recovers quickly by focusing on the positive relationships with other residents. "I get a hug from Eloise. I pour Marianne a fresh cup of decaf. I kid around with Jane. I find my rhythm again" (p. 102). Ms. Kessler’s positive relationships with other residents help her to maintain good composure during the more difficult times.

Patient Centered Caregiving
Ms. Kessler tailors her care and interactions to the individuals she is caring for. She explains her fascination with her patients "I enjoy their company. Their dementias and delusions, their personalities, are fascinating and distinct. Figuring out who they are and what makes them tick is intellectually and emotionally challenging. It is also deeply satisfying" (p.93).

With resident Hayes, Ms. Kessler makes the connection that as a former engineer he needs "every process broken down into small steps" because it "must be how he lived his occupational life" (p. 95). She then tailors her care of him; "I will treat him like the methodical, systematic, organized engineer he was" (p. 95). She proceeds to explain every step in her care processes to him, which she finds helps comfort him by alleviating more of his concerns.

When introducing herself to resident Marianne, Ms. Kessler foregoes her normal greeting of "patting an arm or rubbing a back" (p.84). Instead, she matches Marianne's professional demeanor and formality and shakes hands. She also stays within Marianne's reality, asking "what would be appropriate questions and respond[ing] in appropriate ways if she actually were an administrator here" (p.86). Validation therapy is the approach she finds is helpful in working with Marianne (p.87).

Residents as Individuals
Ms. Kessler encourages us to see beyond the disease; to see people changed by Alzheimer's as individuals. Ms. Kessler also sees her residents as people, with personal lives and specific interests. In reference to a neighborhood with a few swinger couples, she says, "Officially, this is neighborhood 4, but Jasmine and I and the other RAs call it, with wonder and amusement and not a hint of condescension - 'Maplewood 90210' or 'The Old and the Restless'" (p. 78). She respects that residents have a right to explore their sexuality and to be in private relationships with other residents.

New Insights into the Lives of Family Caregivers
While Ms. Kessler’s book was centered mainly on caregiving within a memory care facility, she did touch on aspects of family caregiving. Ms. Kessler’s book illustrated just how much work it is to care for persons with memory loss and how varied the needs of residents can be, from those needing help with every aspect of living to individuals needing just helpful reminders. Ms. Kessler’s book also demonstrates how families can continue to care for their loved ones even after they are being assisted in a care facility by providing them good quality clothes, visiting them often, and maintaining good relationships with the care facility staff.

An Insightful and Inspiring Read

As a good friend likes to say, "You reap what you sow" and persons with Alzheimer's are definitely one great example of that. The openness, positivism and willingness to roll with the punches, as Ms. Kessler finds and expresses in her book, can make visiting and caring for persons with dementia a wonderful experience.

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