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Finding Life in the Land of Alzheimer's: One Daughter's Hopeful Story
"An excellent book…an emotional and ruminative anchor...She leaves her readers with hope.”-- San Francisco Chronicle
One journalist's riveting and surprisingly hopeful in-the-trenches view of Alzheimer's
Nearly five million people in the United States are living with Alzheimer's. Like many children of Alzheimer's sufferers, Lauren Kessler, an accomplished journalist, was devastated by the disease that seemed to erase her mother's identity even before claiming her life. But suppose people with Alzheimer's are not slates wiped blank. Suppose they experience friendship and loss, romance and jealousy, joy and sorrow? To better understand this debilitating condition, Kessler enlists as a bottom-of-the-rung caregiver at an Alzheimer's facility and learns lessons that challenge what we think we know about the disease. A compelling, clear-eyed, and emotionally resonant narrative, Finding Life in the Land of Alzheimer's offers a new optimistic look at what the disease can teach us and a much-needed tonic for those faced with providing care for someone they love.
Previously published as Dancing With Rose.
One journalist's riveting and surprisingly hopeful in-the-trenches view of Alzheimer's
Nearly five million people in the United States are living with Alzheimer's. Like many children of Alzheimer's sufferers, Lauren Kessler, an accomplished journalist, was devastated by the disease that seemed to erase her mother's identity even before claiming her life. But suppose people with Alzheimer's are not slates wiped blank. Suppose they experience friendship and loss, romance and jealousy, joy and sorrow? To better understand this debilitating condition, Kessler enlists as a bottom-of-the-rung caregiver at an Alzheimer's facility and learns lessons that challenge what we think we know about the disease. A compelling, clear-eyed, and emotionally resonant narrative, Finding Life in the Land of Alzheimer's offers a new optimistic look at what the disease can teach us and a much-needed tonic for those faced with providing care for someone they love.
Previously published as Dancing With Rose.
272 pages, Paperback
First published May 31, 2007
27 people are currently reading
748 people want to read
About the author
Lauren Kessler
47 books117 followersLauren Kessler is an award-winning author and immersion reporter who combines lively narrative with deep research to explore everything from the gritty world of a maximum security prison to the grueling world of professional ballet; from the wild, wild west of the anti-aging movement to the hidden world of Alzheimer’s sufferers; from the stormy seas of the mother-daughter relationship to the full court press of women’s basketball. She is the author of 12 works of narrative nonfiction, including Pacific Northwest Book Award winner Dancing with Rose, Washington Post bestseller Clever Girl and Los Angeles Times bestseller The Happy Bottom Riding. She is also the author of Oregon Book Award winner Stubborn Twig, which was chosen as the book for all Oregon to read in honor of the states 2009 sesquicentennial.
Her journalism has appeared in The New York Times Magazine, Los Angeles Times Magazine, O magazine, Utne Reader, The Nation, newsweek.com and salon.com. Club www.laurenkessler.com
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Displaying 1 - 30 of 126 reviews
October 26, 2022
"When you lose your mind, you lose your self, I would have said. Alzheimer’s makes people into zombies, I would have said. The walking dead. Give me anything, but spare me this disease, I would have said. But the time I’ve spent with the residents of Maplewood has eroded my certainty about this. When I see Jane laughing as she plays balloon ball or when I watch Old Frances eat ice cream as if it’s a gift from the gods, when Eloise’s eyes light up as I walk in the room, or when Hayes used to say something so stunningly perfect I swore he must have been reading from a very clever script, it is impossible to think of these people, disease and all, as anything less than fully human."
I think this diagnosis strikes fear into all of us. And probably rightfully so, given that none of us relishes our bodies and minds failing us. It's hard to think of losing our sense of identity or watching those we love do so. It's hard to give up our independence. It's hard to become caretakers to those who once took care of us. Some of us can't imagine anything worse.
This book puts a new spin on that picture. After having her mother succumb to the disease, the author went to work in a care facility, to learn, to reassess, to make amends for what seemed to go awry in dealing with her mother's progression. And through her experiences we all get a close up view of the humanity that remains at the core even as this thief takes parts of people away a layer at a time. While a difficult read at times, it offers a more positive and uplifting perspective of those final months and years faced by an increasing number of people. We are treated to the good, bad, and ugly, and develop a new appreciation for those angels (at home or in care centers) who offer themselves as witnesses and caregivers to those in need. Bless them.
And a little p.s.--If you've had personal experience with this disease, this could be a tough reminder of all the heartache associated with it. While I found it frequently amusing and heart-warming, it is likely because I am not in a personal relationship with anyone experiencing it (although it did remind me of my sister and her battle with Parkinson's), and can view it from that emotional distance. It might be a different experience for those who have had to be more closely present in this journey. That said, it might also resonate with some, depending on your own private and personal histories.
I think this diagnosis strikes fear into all of us. And probably rightfully so, given that none of us relishes our bodies and minds failing us. It's hard to think of losing our sense of identity or watching those we love do so. It's hard to give up our independence. It's hard to become caretakers to those who once took care of us. Some of us can't imagine anything worse.
This book puts a new spin on that picture. After having her mother succumb to the disease, the author went to work in a care facility, to learn, to reassess, to make amends for what seemed to go awry in dealing with her mother's progression. And through her experiences we all get a close up view of the humanity that remains at the core even as this thief takes parts of people away a layer at a time. While a difficult read at times, it offers a more positive and uplifting perspective of those final months and years faced by an increasing number of people. We are treated to the good, bad, and ugly, and develop a new appreciation for those angels (at home or in care centers) who offer themselves as witnesses and caregivers to those in need. Bless them.
And a little p.s.--If you've had personal experience with this disease, this could be a tough reminder of all the heartache associated with it. While I found it frequently amusing and heart-warming, it is likely because I am not in a personal relationship with anyone experiencing it (although it did remind me of my sister and her battle with Parkinson's), and can view it from that emotional distance. It might be a different experience for those who have had to be more closely present in this journey. That said, it might also resonate with some, depending on your own private and personal histories.
November 27, 2010
My mother is in the beginning stages of memory loss, so I found this book particularly helpful and insightful, as well as comforting and encouraging. The author masterfully weaves together her experiences of her mother's progression through Alzheimer's with her subsequent search to find a deeper understand of the disease, working as an aide in a memory care facility.
I particularly appreciated learning about validation therapy, an approach where one enters and engages the person with Alzheimer's within their world. According to Kessler,
"Not long ago, the standard approach taken by health professionals was known as 'reality orientation,' which involved constantly correcting those with Alzheimer's in an effort to keep them grounded in the actual and factual. So, if a demented person started talking about the lunch she just had with her mother, a woman who was actually long dead, the response might be: 'This is 2006. Your mother died thirty years ago. The person you had lunch with was your daughter.'"
But with validation therapy, Kessler says, "You go with that person is going. You don't challenge or contradict or correct. You listen. You respond in a way that encourages conversation. ...[V]alidation therapy is practical sensitive, intuitive - and mind-bending. When you practice it, you are not only keeping stress levels down and opening channels of communication. You are not only respecting the dignity of the other person. You are actually forced to consider that the a person with Alzheimer's might be doing important life work right in front of you."
I also liked the idea that there may be a parallel between Alzheimer's and Zen Buddhism. Kessler notes that she got this idea "not from a monk, not from an alternative health care provider, but from the chair of the geriatrics department at Florida State University Medical School," Kenneth Brummel-Smith. In an interview, he told Kessler, "...[L]ook at this way: Alzheimer's is a detaching disease. It detaches people from their memories, their selves. We can look at that as tragic and awful, or we can change the frame. Consider Zen, which is all about clearing your mind, detaching from your thoughts, grounding yourself in the moment. Well, that's Alzheimer's."
Reading the book also made me feel more at peace with the possibility that my mother may eventually need to live in a memory care facility. While I would like to think that I could just move in with my parents and take care of them, as they once cared for me, it isn't realistic to believe that any one person could handle all daily care needs of an adult with dementia. If need be, at a certain point, Mom may be better cared for in a place set up to meet her needs 24/7 - rather than by frantic, frazzled family members.
Finally, like the author, I now find myself in a gene pool that contains Alzheimer's or memory loss. I appreciated Kessler's reflections on this and am comforted by remembering that there are worse ways to go out of this world. I agree with the author, "I now think I'd rather spend my waning days walking around clueless, holding a chocolate chip cookie, being hugged by big, pillowy women than lying in a hospital bed hooked up to IVs, alert, cognizant, with every memory intact."
I believe that my mother is in a process of transitioning from this life to another one. In a way, Alzheimer's is helping her to do that, to make that change, to transition on. This book has helped me to better understand how I can assist my mom on that journey.
I particularly appreciated learning about validation therapy, an approach where one enters and engages the person with Alzheimer's within their world. According to Kessler,
"Not long ago, the standard approach taken by health professionals was known as 'reality orientation,' which involved constantly correcting those with Alzheimer's in an effort to keep them grounded in the actual and factual. So, if a demented person started talking about the lunch she just had with her mother, a woman who was actually long dead, the response might be: 'This is 2006. Your mother died thirty years ago. The person you had lunch with was your daughter.'"
But with validation therapy, Kessler says, "You go with that person is going. You don't challenge or contradict or correct. You listen. You respond in a way that encourages conversation. ...[V]alidation therapy is practical sensitive, intuitive - and mind-bending. When you practice it, you are not only keeping stress levels down and opening channels of communication. You are not only respecting the dignity of the other person. You are actually forced to consider that the a person with Alzheimer's might be doing important life work right in front of you."
I also liked the idea that there may be a parallel between Alzheimer's and Zen Buddhism. Kessler notes that she got this idea "not from a monk, not from an alternative health care provider, but from the chair of the geriatrics department at Florida State University Medical School," Kenneth Brummel-Smith. In an interview, he told Kessler, "...[L]ook at this way: Alzheimer's is a detaching disease. It detaches people from their memories, their selves. We can look at that as tragic and awful, or we can change the frame. Consider Zen, which is all about clearing your mind, detaching from your thoughts, grounding yourself in the moment. Well, that's Alzheimer's."
Reading the book also made me feel more at peace with the possibility that my mother may eventually need to live in a memory care facility. While I would like to think that I could just move in with my parents and take care of them, as they once cared for me, it isn't realistic to believe that any one person could handle all daily care needs of an adult with dementia. If need be, at a certain point, Mom may be better cared for in a place set up to meet her needs 24/7 - rather than by frantic, frazzled family members.
Finally, like the author, I now find myself in a gene pool that contains Alzheimer's or memory loss. I appreciated Kessler's reflections on this and am comforted by remembering that there are worse ways to go out of this world. I agree with the author, "I now think I'd rather spend my waning days walking around clueless, holding a chocolate chip cookie, being hugged by big, pillowy women than lying in a hospital bed hooked up to IVs, alert, cognizant, with every memory intact."
I believe that my mother is in a process of transitioning from this life to another one. In a way, Alzheimer's is helping her to do that, to make that change, to transition on. This book has helped me to better understand how I can assist my mom on that journey.
February 8, 2020
This book was heartbreaking and beautiful. It gave me a totally new perspective on how our culture cares for our elderly. It helped me to see Alzheimer’s in a new light. I have so much appreciation for full time care workers.
April 4, 2013
Mother of God, am I glad to be done with this book. I know that sounds like it was terrible, but it was, in fact, the opposite, of which I am truly astonished. There was actually positivity and joy in this book. I think that is a very rare find in the world of Alzheimer's and I would definitely recommend this to anyone who knows a person with this disease, or who has in the past. I wish I would have had this information when my grandma was still alive. That being said, it was such a struggle for me to get through. Not because it's a hard read, just because of my own shit. Here are a few things I liked:
"There's intriguing new evidence that marijuana (TCH, that is) and red wine might inhibit the progress of the disease." Drink up! Smoke 'em if you got 'em!
"Now I know this sounds way out there," he told me, "but look at it this way: Alzheimer's is a detaching disease. It detaches people from their memories, their selves. We can look at that as tragic and awful, or we can change the frame." I didn't know where he was headed, but he had my attention. "Consider Zen," he said, "which is all about clearing your mind, detaching from your thoughts, grounding yourself in the moment." He paused, either to give me time to consider or for dramatic effect. "Well," he said finally, "that's Alzheimer's." I know this is hard to digest, but Kessler talks about how she understood this more and more while working in the field.
"They don't have ulterior motives. They don't manipulate. They don't play games. They just are." This is rare, and I enjoyed the trait very much in my grandmother.
I had more bookmarked to put in this review but it's too exhausting. It's a good and very helpful book.
"There's intriguing new evidence that marijuana (TCH, that is) and red wine might inhibit the progress of the disease." Drink up! Smoke 'em if you got 'em!
"Now I know this sounds way out there," he told me, "but look at it this way: Alzheimer's is a detaching disease. It detaches people from their memories, their selves. We can look at that as tragic and awful, or we can change the frame." I didn't know where he was headed, but he had my attention. "Consider Zen," he said, "which is all about clearing your mind, detaching from your thoughts, grounding yourself in the moment." He paused, either to give me time to consider or for dramatic effect. "Well," he said finally, "that's Alzheimer's." I know this is hard to digest, but Kessler talks about how she understood this more and more while working in the field.
"They don't have ulterior motives. They don't manipulate. They don't play games. They just are." This is rare, and I enjoyed the trait very much in my grandmother.
I had more bookmarked to put in this review but it's too exhausting. It's a good and very helpful book.
February 18, 2013
Dancing With Rose: Finding Life in the Land of Alzheimer's is an important, if difficult read for anyone dealing with a relative who is suffering from dementia. I read this on the recommendation of my older sister after it was recommended to her by the Alzheimers Society of Canada as we learn to deal with our mother’s deteriorating mental state due to dementia.
Lauren, in Dancing with Rose tells the story of her time working and researching about dementia and Alzheimers in a care facility following her own mother's illness and death. She relates the lives of the residents as they progress through the initial stages of dementia to the point where their families can no longer cope and must let others take over. She chronicles the trials and tribulations of the caregivers who are, in her experience, overworked and underpaid. She also relates the residents moments of the awareness and how she has come to see that they are able to live in the moment. It has helped me to be better able to deal with my own mother’s view of the world and her life as dementia separates her from her memories and the realities of her world. It will never be easy to see the woman I knew with such a great memory become the one I see today growing increasingly confused and creating a reality that only really exists in her own mind. I know the time is coming when we too will have to move mom into a facility with more controlled access than is offered at her current retirement residence for her own safety. I just pray that she can receive the same level of care that Lauren describes since I am unaware of any specialized facilities for Alzheimers like the one she describes.
Lauren, in Dancing with Rose tells the story of her time working and researching about dementia and Alzheimers in a care facility following her own mother's illness and death. She relates the lives of the residents as they progress through the initial stages of dementia to the point where their families can no longer cope and must let others take over. She chronicles the trials and tribulations of the caregivers who are, in her experience, overworked and underpaid. She also relates the residents moments of the awareness and how she has come to see that they are able to live in the moment. It has helped me to be better able to deal with my own mother’s view of the world and her life as dementia separates her from her memories and the realities of her world. It will never be easy to see the woman I knew with such a great memory become the one I see today growing increasingly confused and creating a reality that only really exists in her own mind. I know the time is coming when we too will have to move mom into a facility with more controlled access than is offered at her current retirement residence for her own safety. I just pray that she can receive the same level of care that Lauren describes since I am unaware of any specialized facilities for Alzheimers like the one she describes.
July 12, 2007
This book is SO GOOD . It's really lovely and sad but hopeful as well. If you know someone with Alzheimer's, this really humanizes the people with the disease. The author worked in a care-giving facility for almost a year, and her stories are so well written and touching.
April 5, 2020
This book was excellent because it gave me such a different perspective on Alzheimer’s by looking at it as just a different journey, rather than a debilitating disease. It was what most people call an “easy read”, which is perfect for me.
Lauren’s book really hit home because 3 out of 4 of my grandparents passed away before I was born or before I could remember, while the only one that I do remember meeting ironically probably didn’t remember that moment for more than a few minutes as she was in the advanced stages of Alzheimer’s...I however will remember it for the rest of my life. I tried to brace myself as my parents did their best to explain to me what was going on with her, but listening to my dad trying to explain to her that he was her son and hearing her deny that she ever had a son just didn’t compute in my brain. She also repeated “I am tired and I want to go home” multiple times and a few years after that visit in NY we got the call that she did leave this earth and go home.
Well with that said, this book has helped me to understand a little bit about what was going on with my grandma. One of the chapters tore me up when Lauren plainly listed the tragic realities of these care facilities: overworked/underpaid employees, rampant turnover, overcrowded residents and the list went on and on. I hope that God uses me to change this in some way. If it is His will I would like to start a facility that is completely opposite of the norm for this industry.
Lauren’s book really hit home because 3 out of 4 of my grandparents passed away before I was born or before I could remember, while the only one that I do remember meeting ironically probably didn’t remember that moment for more than a few minutes as she was in the advanced stages of Alzheimer’s...I however will remember it for the rest of my life. I tried to brace myself as my parents did their best to explain to me what was going on with her, but listening to my dad trying to explain to her that he was her son and hearing her deny that she ever had a son just didn’t compute in my brain. She also repeated “I am tired and I want to go home” multiple times and a few years after that visit in NY we got the call that she did leave this earth and go home.
Well with that said, this book has helped me to understand a little bit about what was going on with my grandma. One of the chapters tore me up when Lauren plainly listed the tragic realities of these care facilities: overworked/underpaid employees, rampant turnover, overcrowded residents and the list went on and on. I hope that God uses me to change this in some way. If it is His will I would like to start a facility that is completely opposite of the norm for this industry.
October 29, 2010
Lauren Kessler lived through her own mother’s Alzheimer’s diagnosis, and progression to death. What sets this Alzheimer’s focused book apart is that Kessler became a nursing home employee in order to better understand Alzheimer’s patients and to research this book. Of all the many books I’ve recently read with an Alzheimer’s theme, I found this the most broadly detailed and helpful. '
Because the author actually worked in the nursing home, she came to intimately know (both in the sense of wiping bottoms; and in gleaning a sense of their true selves – both past and present – through interviews and archived records) many Alzheimer’s patients.
In general, this is a hopeful book. She shows Alzheimer’s has its less dreadful aspects -- it often removes patients’ inhibitions and social filters, allowing the patient’s long repressed, but authentic, selves to be glimpsed. It’s not a painful disease. She even considers reframing the simple, repetitive behaviors patients sometimes seemed stuck in as sort of Zen enlightenment, akin to a Buddhist monk daily raking the sand in a garden. The disease’s long, gradual progression toward death forces a different sort of “good-bye”, but not necessarily a worse one.
Kessler is a good writer and her personal connection to the disease shines through. Her poignant observation, after she receives a paper “star” for being a good employee is: “What I really want is what I can’t have, what I blew my chances for: I want a star for taking care of my mother. I want a star for being a good daughter.” She may not have been able to do all she wanted for her own mother. But, the care and love she shows for her charges later, and her accounts of coworkers’ similar care and love, convinced me some nursing homes can be “happy places.”
Lastly, I appreciated Kessler laying out, in plain language, how shortsighted and unfair it is for the nursing home caregivers to be so poorly paid and so overworked.
Because the author actually worked in the nursing home, she came to intimately know (both in the sense of wiping bottoms; and in gleaning a sense of their true selves – both past and present – through interviews and archived records) many Alzheimer’s patients.
In general, this is a hopeful book. She shows Alzheimer’s has its less dreadful aspects -- it often removes patients’ inhibitions and social filters, allowing the patient’s long repressed, but authentic, selves to be glimpsed. It’s not a painful disease. She even considers reframing the simple, repetitive behaviors patients sometimes seemed stuck in as sort of Zen enlightenment, akin to a Buddhist monk daily raking the sand in a garden. The disease’s long, gradual progression toward death forces a different sort of “good-bye”, but not necessarily a worse one.
Kessler is a good writer and her personal connection to the disease shines through. Her poignant observation, after she receives a paper “star” for being a good employee is: “What I really want is what I can’t have, what I blew my chances for: I want a star for taking care of my mother. I want a star for being a good daughter.” She may not have been able to do all she wanted for her own mother. But, the care and love she shows for her charges later, and her accounts of coworkers’ similar care and love, convinced me some nursing homes can be “happy places.”
Lastly, I appreciated Kessler laying out, in plain language, how shortsighted and unfair it is for the nursing home caregivers to be so poorly paid and so overworked.
June 15, 2011
Since my mom is in the mid stages of Alzheimer's disease this was at times a heart wrenching read for me. But I gained many new insights into the disease. Lauren Kessler does an excellent and heroic job of finding the humanity in each Alzheimer's resident that she works with while being a resident assistant in an Alzheimer's care unit. Kessler's story helps the reader understand that although there is a typical progression of the disease; early, mid and late stages, every individual exhibits the disease differently. It seems that as the disease lessens inhibitions, long hidden personality traits emerge. These are not necessarily all negative. (I know that I have seen this occur in my very proper mother, and I have enjoyed it!) Kessler also shares the belief by some experts that the intense presence of long term memories that are experienced by those afficted with the disease often helps them make peace with the past, or helps to carry them through the difficulties of the disease. Of course anyone who has a family member with Alzheimer's disease can't help but think, what about me? Will I get this? At times I have thought if this is going to be my end I want nothing to do with it. In truth I don't feel that that choice is mine. So I will continue to educate and take care of myself. If the disease comes my way I will try to handle it with dignity, acceptance and courage, just as my mom is. Thanks to Lynn B. for recommending this book to me.
February 9, 2010
Journalist, Lauren Kessler, chooses to work as a "resident's assistant" at an Ahlzheimer's facility as a way of trying to make peace with and understand more about her what her mother (who died a number of years ago) experienced in the last years of her life. The author seamlessly weaves her first person experiences with medical research as she chronicles her day to day interactions with the residents. Her compassion is evident and she is honest, yet hopeful, about those who live with the disease. I loved discovering that while a frustrating process, there is much that patients enjoy in the moment, even if the moment cannot be remembered later. This book was recommended to me by someone who heard that my dad was recently diagnosed with Alzheimers. I am even more committed to loving my dad "as is" during this challenging time in his life.
November 5, 2009
My grandmother, who has Alzheimer's, has recently come to live with my parents. I've been doing a lot of reading about the disease lately, and this is far and away the best book I've come across. The author does an excellent job of explaining the disease, summarizing research on Alzheimer's, and describing how it affects people who have it. I think my favorite part of the book was actually her perspective--she manages to describe the reality of Alzheimer's without sugarcoating it and still maintain an overall tone of positivity. So many Alzheimer's books I've read have been terribly depressing. It was very refreshing to read a book that took an alternate view of the disease and chose to focus on the idea that people with Alzheimer's deserve to be treated as just that--people!
April 6, 2024
One of the best books I’ve read on this subject. No medical jargon on the types and possible causes of dementia; no data on research and expected breakthroughs; no tips for caregivers and/or how to choose facilities; but rather an honest reflection on her failures during her journey with her mother through the landscape of dementia and her desire to right her wrongs. I highly encourage the reading of this book. It would make activist of us all.
May 6, 2008
A journalist explores Alzheimer's by becoming an unskilled worker in an Alzheimer's care facility. She develops an appreciation of the humanity of those in her care (and her fellow caregivers, who are so underpaid and under-appreciated!) And she came to better terms with her mom's death. Nice to have a different look at the disease that took my Dad from me several years before his death.
July 25, 2017
A quick read and good story. Helpful because it describes the context I am currently in, but I struggled with the author's privilege of being able to pick and choose entry into the setting. Best thing I got from the book was an interpretation of dementia as enlightenment, being in the now, mastery of the present.
September 1, 2013
Outstanding. I recommend this to anyone with aging parents whether they have dementia or not. Observations and commentary were spot on and the story filled me with hope.
July 26, 2016
This book paints a picture of life inside a care center for those with Alzheimer's. It helps us understand a little bit better the challenges faced by those living there and those working there. Obviously this can be a little bit depressing and hard to read, especially if you are close to a similar situation, but from my experiences and observations much of the information here seems very accurate. This story is told by a writer whose mother recently died of Alzheimer's. To try to understand better and eliminate some guilt she goes to work at a care facility. She deals with a lot of hard things, but learns a lot and I think helps each of us reconsider the value of life and humanity.
A couple of times while reading this I stopped to ask myself why I was reading it. It is sad, but it is real. This is life for many people and I think it's important to try to understand where others are coming from and to consider challenges others face as well as the value of each life....and hopefully how we can make life better for those around us, no matter what they're going through.
Here are a few quotes that I liked:
"I was going to force myself o confront what I'd been too scared to confront earlier, when the disease had been up close and personal. I was going to buckle down and learn all manner of important life lessons. I was going to make up for being a lousy daughter...So I spent time in the trenches observing other people's mothers, and I wrote about it. I peeled away maybe a layer or two, but I didn't feel much wiser....It was my detached position as observer and writer. If I was to come to terms with this disease that took my mother's life, if I was to learn whatever it was I needed to learn, I had to stop hiding behind my reporter's notebook and get inside the world of Alzheimer's...I decided to hire on at Maplewood. I would immerse myself fully and completely in the daily lives of those with this disease. I would take care of other people's mothers the way strangers had taken care of my mother (p. 2)."
"Like all mothers, I have done these jobs, all of these jobs. But caring for children who are cute and cuddly and smell good and get smarter every day is just not the same (p. 5)."
"Francis is not complaining, and she's not trying to discourage us. She's just getting a little weary of training new workers, some who don't make it past the three-day orientation, others who stay only long enough to pick up their first paycheck. Frances understands why others come and go. She accepts the reality. But it's not her reality. She loves this job, she tells us. She is one of those earnest, hardworking, egoless people you read about but don't quite believe exist (p. 14)."
"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)."
"Every child of a parent with Alzheimer's secretly fears that there is a bad gene at work, a gene that's been passed on and lies in wait, ready to switch on the machinery of dementia when the time is right (p. 27)."
"I'm sure I can learn something from this place and these people, but I'm not sure what. I hope I have the strength and the stamina--physical and emotional--to stick around and find out (p. 27)."
"For the next fifteen minutes I try to ease myself through the transition from Maplewood into the world I know, the world I am comfortable with. It is a world of thoughts and ideas, of talk, of concepts, of books to be read and discussed, films to be seen. Diapers go on babies in my world (p. 29)."
"If Jasmine and I didn't have each other today, one or both of us would be out the door (p. 31)."
"There's a way of looking at Alzheimer's that is not about decline and loss but is instead about movement from the worldly to the spiritual (p. 32)."
"He inches along behind his walker, asking us 'what's next, what's next?' with every step (p. 33)."
"Unresponsive and unreachable, Rose spends her days wandering from one resident's room to another, pushing a chair or walker in front of her, taking glasses or hearing aids, pillows, socks, knickknacks, whatever she an find, from one room and depositing them somewhere else. It's a joke around here, I've already discovered (p. 36)."
"It matters that I do this job well. The residents depend on me. Their world is very small now, the rooms and corridors of Maplewood, and I am in charge of it all (p. 43)."
"At Maplewood, as elsewhere, each resident has what's called a 'service plan,' a multipage document that details what help the person needs to accomplish the simple daily activities of life (p. 43)."
"The body is such a complicated machine, so many parts, so many systems, so many opportunities for errors and breakdowns. It's a wonder it all works, so I guess it's not surprising when ultimately, it doesn't (p. 45)."
"I started brushing her teeth. Then she took over and wouldn't stop. I couldn't get her to stop...So much for cueing to brush teeth. Maybe the difference between Frances M. on paper and Frances M. in the flesh is wishful thinking on her daughter's part, or perhaps denial (p. 45)."
"The idea of the game is to keep the ball in play, in the air, with the staffer batting it first to one resident, then another, each one returning the ball with a healthy whack. The activity combines physical exercise, hand-eye coordination, concentration, and a bit of socializing. From a life engagement perspective, it is a winner. But, from my vantage point in the kitchenette, I can't imagine how this is going to work, how, between the infirmities and slow reflexes of old age, and the disconnect of Alzheimer's, these men and women are going to keep the ball in the air. Or have fun (p. 55)."
"These women who no longer have the ability to regulate their own lies--they cannot dress themselves; they do not know when mealtime is or when to go to bed--somehow effortlessly keep their baby-dolls on a predictable daily schedule (p. 61)."
"Marianne, it is gradually dawning on me, believes she is an administrator here at Maplewood. What kind of a place she thinks Maplewood is, I have yet to discover. This woman goes against everything I thought I knew about Alzheimer's. I thought the disease stripped away the outer layers, the public layers, that over time if Alzheimer's left anything, it left the distilled essence of the person--Jack's sense that he is someone who helps people, Rose's restless soul. But Marianne's outer layers are very much intact. Or maybe I'm looking at it the wrong way. Perhaps this is Marianne's essence. After all, she spent a half century as a career woman, starting a job when most women, like my mother, were starting families in the new post-war suburbs. This is how she defined herself, and it's how she defines herself now. So maybe it makes sense that this part of Marianne remains untouched by brain plaques and never tangles (p. 86)."
"Suppose caregivers tuned in to the reality being lived by the person with Alzheimer's rather than trying to force another reality upon them (p. 88)?"
"When you're sure he doesn't understand, he says something so insightful it takes your breath away. Then, that neatly accomplished, he goes back to being a bossy, cranky, difficult old coot (p. 94)."
"With some of the residents this lack of modesty is part of a general lack of awareness, the brain-disease trance they're in. But with others, like Eloise, I think it comes from a different place. I think it's an almost saintly acknowledgement of their own vulnerability, a calm, open acceptance of their own needs and the fact that now others must be involved in helping them. It's Eloise's lack of vanity, her peaceful, artless humility that makes it possible for me to do what I do (p. 98)."
"I silently thank Jennie every day. I want to know her secret, her secret to not giving up (p. 105)."
"I take a week off after the funerals. I need time to accept that Rose and Hayes are both gone. When you work with the sick elderly, you know their days are numbered, but knowing that they will die and the fact of them dying are two different things. I am very slowly learning not to be unnerved by what is really, when I think about it, just the rhythm of life. In our culture, it's easy to shield yourself from that rhythm, to not hear it or feel it, to think you exist outside it. Your world is healthy and forever young. Death happens elsewhere, to invisible, anonymous people. But here at Maplewood, I am unshielded (p. 193)."
"I consider it a miracle that family members last as long as they do. I also think--and I've told wives and daughters and sons this--that, at a certain point, an Alzheimer's facility, a decent one like Maplewood, is the best, most humane, most loving place their mom can be (p. 202)."
"This is the most draining work I've ever done, but as I am drained, I am also filled, and I think the equation often works in my favor (p. 210)."
"Wisdom, it seems, exists outside of memory (p. 212)."
"The problem is understaffing. The problem is undertraining. The problem is high caregiver turnover. The problem is paying minimum wage. The problem is the eldercare industry. (I could go on, and so I will: The problem is undervaluing the elderly. The problem is fear of aging. The problem is fear of dying (p. 216))."
"'I am losing my mind...But the essence of a person is their heart, isn't it?' The documentarians let the question hang in the air. Is the essence of a person head or heart? It's not a warm-and-fuzzy New Age question. It's a real question that goes to the core of our sense of what it means to be human: When we lose our mind (our memories, our coherent thoughts) do we lose our humanity? If we keep our 'heart' (our emotions, our connectedness) do we remain, in essence, who we always were? When my mother got Alzheimer's, when I saw her and spent time with her, I would have answered that question, emphatically, one way. When you lose your mind, you lose your self, I would have said. Alzheimer's makes people into zombies, I would have said. The walking dead. Give me anything, but spare me this disease, I would have said. But the time I've spent with the residents of Maplewood has eroded my certainty about this (p. 223)."
"But part of me has come to think of Alzheimer's, despite its obvious horrors, as a disease of freedom. It's not just memory that one loses. It is inhibition. It is pretense. The thin layer of civility that forces us healthy people to operate with equanimity even when we are tired or crabby or don't like someone or just want to be left alone--that's gone too. What remains is some unvarnished, unprotected self, maybe the self a person would have been had culture and society, gender and class, manners and mores not overlaid it. The buried self, the unlived self (p. 224)."
A couple of times while reading this I stopped to ask myself why I was reading it. It is sad, but it is real. This is life for many people and I think it's important to try to understand where others are coming from and to consider challenges others face as well as the value of each life....and hopefully how we can make life better for those around us, no matter what they're going through.
Here are a few quotes that I liked:
"I was going to force myself o confront what I'd been too scared to confront earlier, when the disease had been up close and personal. I was going to buckle down and learn all manner of important life lessons. I was going to make up for being a lousy daughter...So I spent time in the trenches observing other people's mothers, and I wrote about it. I peeled away maybe a layer or two, but I didn't feel much wiser....It was my detached position as observer and writer. If I was to come to terms with this disease that took my mother's life, if I was to learn whatever it was I needed to learn, I had to stop hiding behind my reporter's notebook and get inside the world of Alzheimer's...I decided to hire on at Maplewood. I would immerse myself fully and completely in the daily lives of those with this disease. I would take care of other people's mothers the way strangers had taken care of my mother (p. 2)."
"Like all mothers, I have done these jobs, all of these jobs. But caring for children who are cute and cuddly and smell good and get smarter every day is just not the same (p. 5)."
"Francis is not complaining, and she's not trying to discourage us. She's just getting a little weary of training new workers, some who don't make it past the three-day orientation, others who stay only long enough to pick up their first paycheck. Frances understands why others come and go. She accepts the reality. But it's not her reality. She loves this job, she tells us. She is one of those earnest, hardworking, egoless people you read about but don't quite believe exist (p. 14)."
"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)."
"Every child of a parent with Alzheimer's secretly fears that there is a bad gene at work, a gene that's been passed on and lies in wait, ready to switch on the machinery of dementia when the time is right (p. 27)."
"I'm sure I can learn something from this place and these people, but I'm not sure what. I hope I have the strength and the stamina--physical and emotional--to stick around and find out (p. 27)."
"For the next fifteen minutes I try to ease myself through the transition from Maplewood into the world I know, the world I am comfortable with. It is a world of thoughts and ideas, of talk, of concepts, of books to be read and discussed, films to be seen. Diapers go on babies in my world (p. 29)."
"If Jasmine and I didn't have each other today, one or both of us would be out the door (p. 31)."
"There's a way of looking at Alzheimer's that is not about decline and loss but is instead about movement from the worldly to the spiritual (p. 32)."
"He inches along behind his walker, asking us 'what's next, what's next?' with every step (p. 33)."
"Unresponsive and unreachable, Rose spends her days wandering from one resident's room to another, pushing a chair or walker in front of her, taking glasses or hearing aids, pillows, socks, knickknacks, whatever she an find, from one room and depositing them somewhere else. It's a joke around here, I've already discovered (p. 36)."
"It matters that I do this job well. The residents depend on me. Their world is very small now, the rooms and corridors of Maplewood, and I am in charge of it all (p. 43)."
"At Maplewood, as elsewhere, each resident has what's called a 'service plan,' a multipage document that details what help the person needs to accomplish the simple daily activities of life (p. 43)."
"The body is such a complicated machine, so many parts, so many systems, so many opportunities for errors and breakdowns. It's a wonder it all works, so I guess it's not surprising when ultimately, it doesn't (p. 45)."
"I started brushing her teeth. Then she took over and wouldn't stop. I couldn't get her to stop...So much for cueing to brush teeth. Maybe the difference between Frances M. on paper and Frances M. in the flesh is wishful thinking on her daughter's part, or perhaps denial (p. 45)."
"The idea of the game is to keep the ball in play, in the air, with the staffer batting it first to one resident, then another, each one returning the ball with a healthy whack. The activity combines physical exercise, hand-eye coordination, concentration, and a bit of socializing. From a life engagement perspective, it is a winner. But, from my vantage point in the kitchenette, I can't imagine how this is going to work, how, between the infirmities and slow reflexes of old age, and the disconnect of Alzheimer's, these men and women are going to keep the ball in the air. Or have fun (p. 55)."
"These women who no longer have the ability to regulate their own lies--they cannot dress themselves; they do not know when mealtime is or when to go to bed--somehow effortlessly keep their baby-dolls on a predictable daily schedule (p. 61)."
"Marianne, it is gradually dawning on me, believes she is an administrator here at Maplewood. What kind of a place she thinks Maplewood is, I have yet to discover. This woman goes against everything I thought I knew about Alzheimer's. I thought the disease stripped away the outer layers, the public layers, that over time if Alzheimer's left anything, it left the distilled essence of the person--Jack's sense that he is someone who helps people, Rose's restless soul. But Marianne's outer layers are very much intact. Or maybe I'm looking at it the wrong way. Perhaps this is Marianne's essence. After all, she spent a half century as a career woman, starting a job when most women, like my mother, were starting families in the new post-war suburbs. This is how she defined herself, and it's how she defines herself now. So maybe it makes sense that this part of Marianne remains untouched by brain plaques and never tangles (p. 86)."
"Suppose caregivers tuned in to the reality being lived by the person with Alzheimer's rather than trying to force another reality upon them (p. 88)?"
"When you're sure he doesn't understand, he says something so insightful it takes your breath away. Then, that neatly accomplished, he goes back to being a bossy, cranky, difficult old coot (p. 94)."
"With some of the residents this lack of modesty is part of a general lack of awareness, the brain-disease trance they're in. But with others, like Eloise, I think it comes from a different place. I think it's an almost saintly acknowledgement of their own vulnerability, a calm, open acceptance of their own needs and the fact that now others must be involved in helping them. It's Eloise's lack of vanity, her peaceful, artless humility that makes it possible for me to do what I do (p. 98)."
"I silently thank Jennie every day. I want to know her secret, her secret to not giving up (p. 105)."
"I take a week off after the funerals. I need time to accept that Rose and Hayes are both gone. When you work with the sick elderly, you know their days are numbered, but knowing that they will die and the fact of them dying are two different things. I am very slowly learning not to be unnerved by what is really, when I think about it, just the rhythm of life. In our culture, it's easy to shield yourself from that rhythm, to not hear it or feel it, to think you exist outside it. Your world is healthy and forever young. Death happens elsewhere, to invisible, anonymous people. But here at Maplewood, I am unshielded (p. 193)."
"I consider it a miracle that family members last as long as they do. I also think--and I've told wives and daughters and sons this--that, at a certain point, an Alzheimer's facility, a decent one like Maplewood, is the best, most humane, most loving place their mom can be (p. 202)."
"This is the most draining work I've ever done, but as I am drained, I am also filled, and I think the equation often works in my favor (p. 210)."
"Wisdom, it seems, exists outside of memory (p. 212)."
"The problem is understaffing. The problem is undertraining. The problem is high caregiver turnover. The problem is paying minimum wage. The problem is the eldercare industry. (I could go on, and so I will: The problem is undervaluing the elderly. The problem is fear of aging. The problem is fear of dying (p. 216))."
"'I am losing my mind...But the essence of a person is their heart, isn't it?' The documentarians let the question hang in the air. Is the essence of a person head or heart? It's not a warm-and-fuzzy New Age question. It's a real question that goes to the core of our sense of what it means to be human: When we lose our mind (our memories, our coherent thoughts) do we lose our humanity? If we keep our 'heart' (our emotions, our connectedness) do we remain, in essence, who we always were? When my mother got Alzheimer's, when I saw her and spent time with her, I would have answered that question, emphatically, one way. When you lose your mind, you lose your self, I would have said. Alzheimer's makes people into zombies, I would have said. The walking dead. Give me anything, but spare me this disease, I would have said. But the time I've spent with the residents of Maplewood has eroded my certainty about this (p. 223)."
"But part of me has come to think of Alzheimer's, despite its obvious horrors, as a disease of freedom. It's not just memory that one loses. It is inhibition. It is pretense. The thin layer of civility that forces us healthy people to operate with equanimity even when we are tired or crabby or don't like someone or just want to be left alone--that's gone too. What remains is some unvarnished, unprotected self, maybe the self a person would have been had culture and society, gender and class, manners and mores not overlaid it. The buried self, the unlived self (p. 224)."
June 6, 2022
This was one of those books that was hard for me to put down for very long. My father suffered with dementia and had to be moved into memory care before he passed away less than a year ago, so Ms. Kessler's experiences struck close to my heart. It was both sad and enthralling to read about her own experiences with her mother, as well as to see memory care from the other side of the coin thru a caregivers' eyes. I had always vehemently promised that I would NEVER, ever put either of my parents in a care facility and would absolutely move them in with me and care for them myself. But when reality hit in 2020, it soon became devastatingly obvious that I simply lacked the capacity, funds, physical strength, resources, and space to care for them 24/7 in my home. The whole situation has left me with a lot of guilt that is only slightly assuaged by the knowledge that I nearly killed myself doing everything I COULD do to try and help them. I also offered to move Dad in with me and my family twice, yet both times he said "no." In hindsight, and even though it was a very difficult situation, I now realize that his decision was a blessing both to us and to him.
So I more than empathize with Ms. Kessler and on many occasions found myself thinking "I understand..." as I read about her own experiences with her mother. And while I do wish I'd found this book before our family was confronted with the realities of dementia, even after the fact, I still found it helpful to know that I'm not alone and have shared many of the same thoughts, feelings, and struggles as Ms. Kessler. Her experiences have helped me to work thru some of my own lingering emotions, and to also realize that we actually handled things and interacted with Dad a lot better than I thought we did at the time. So for these reasons I do recommend this book and am grateful to Ms. Kessler for writing it.
So I more than empathize with Ms. Kessler and on many occasions found myself thinking "I understand..." as I read about her own experiences with her mother. And while I do wish I'd found this book before our family was confronted with the realities of dementia, even after the fact, I still found it helpful to know that I'm not alone and have shared many of the same thoughts, feelings, and struggles as Ms. Kessler. Her experiences have helped me to work thru some of my own lingering emotions, and to also realize that we actually handled things and interacted with Dad a lot better than I thought we did at the time. So for these reasons I do recommend this book and am grateful to Ms. Kessler for writing it.
June 29, 2018
As someone who leads a volunteer club that pairs students one-on-one with buddies at a memory care facility, I enjoyed reading the perspectives of the author. Our club stresses seeing the person behind the disease and learning how to connect with that person in that moment. Some people see Alzheimer's as a disease that strips a person of their identity, but this book offers a new, enlightened perspective on disease and aging. "How surprised we are to learn life doesn't end when this disease begins .... you can choose instead to see the pleasure [people] are experiencing right now, at this moment." For caregivers, healthcare workers, or interested students, this is a valuable perspective to have. For this reason, I would recommend this book to anyone interested in learning about Alzheimer's disease. As I pursue a field in neurology, I am excited for the future of Alzheimer's care.
Furthermore, since the author, Lauren Kessler, worked as a Resident Assistant (RA) in a memory care facility, I have also gained a new appreciation for the workers in the facility. Seeing through the eyes of a RA has shown me that the work is difficult, taxing, and oftentimes under-appreciated. From now on, I will take my time to thank the RAs at the memory care facility I visit every week, because appreciating those who care for our elderly is of utmost importance.
Furthermore, since the author, Lauren Kessler, worked as a Resident Assistant (RA) in a memory care facility, I have also gained a new appreciation for the workers in the facility. Seeing through the eyes of a RA has shown me that the work is difficult, taxing, and oftentimes under-appreciated. From now on, I will take my time to thank the RAs at the memory care facility I visit every week, because appreciating those who care for our elderly is of utmost importance.
August 10, 2021
I so appreciated this author’s honesty in how she relayed her feelings of having failed to care properly for her mother who suffered from Alzheimer’s and of her time spent working as a journalist/care aid with Alzheimer’s patients in a long term care facility. She is very frank about her feelings and reactions towards the uncomfortable realities involved. She talks about the emotional drain, but also the emotional gains and attachments that she experiences while working with the Alzheimer’s patients. She offers compassion to those family members that find themselves unable to continue looking after their loved ones. The love and care that she and other staff members show towards the patients offers hope for people who must make the difficult choice to place their loved ones in care.
I love the message that suggests we reframe our thinking towards those who experience Alzheimer’s - instead of focusing on all that our loved ones have lost, think about the freedom that they have gained. They are free from so many social constraints and future worries. If we are able to find ways to be with them, living in the now, it can also offer us some freedom and some deep appreciation for the time we spend with our loved ones, as well.
I love the message that suggests we reframe our thinking towards those who experience Alzheimer’s - instead of focusing on all that our loved ones have lost, think about the freedom that they have gained. They are free from so many social constraints and future worries. If we are able to find ways to be with them, living in the now, it can also offer us some freedom and some deep appreciation for the time we spend with our loved ones, as well.
September 24, 2023
Read this book for class. I enjoyed the stories and lessons that were shared by Lauren. Having several family members who have different dementia diagnoses, along with volunteering with people who experience dementia, I could greatly appreciate this book. It helps foster an insight into Alzheimer’s while increasing one’s love and empathy for these individuals, their families, and their caregivers.
January 12, 2018
I was touched by this powerfully moving account of a woman whose guilt and disappointment over how she handled her mother's Alzheimers motivates her to take a job as a caretaker at an Alzheimers facility. This book has not only opened my eyes to how I look at such patients, but also restored my faith in the motives of many of the overworked, underpaid staff who care for them. Inspiring, indeed.
September 23, 2019
This book comes at a particularly opportune time since I am attempting to place my mother in a Memory Care unit. I have been both heartbroken and scared. I wondered if her caregivers could provide her with the attention she needs to address her dementia. Ms. Kessler's book provided me with hope that perhaps my mother might be cared for by the type of staff described in her book.
May 3, 2020
Really appreciated the detail in this book. The author captures a lot of the day-to-day quirks of Alzheimer's and the ways we feel about this: does Alzheimer's and nursing home care take away a person's quality of life, does it take away a caregiver's hope, her joie de vivre? Kessler works through some guilt while trying to find answers working as a RA at Maplewood.
September 23, 2022
My psych of aging class needs to stop assigning books that I get so absolutely hooked on! I went into this book thinking that it was going to be depressing. I mean, it's a book about Alzheimer's so I think that's just common thinking. I was hooked on it almost instantly. I forgot that Lauren was doing this whole thing as an experiment for a paper she was writing. I could not put it down.
April 24, 2023
Highly recommend this book. It is a great insight of those with Alzheimer’s and dementia. It is even a great book to understand the stages of aging. The author does not sugar coat anything. The author is able to connect with her readers and a family member and as a resident assistant. In the end she proves there is still life to lived even if it is in the small moments.
July 10, 2024
Deep dive into the world of institutional care taking of Alzheimer’s patients, with memoir perspective. In typical fashion Lauren jumps into the investigative journalism by doing the actual work in a facility. I appreciated the perspective on how a facility like this runs, as well as the spark that is still present in those who live with this disease.
February 28, 2020
This book was an eye opening read that I couldn’t put down and stayed up to finish!! What an incredible view on dementia and Alzheimer’s! Thank you so much to th author for writing this great journey of hers!!! Recommend to anyone who is dealing with this horrid disease in their family ❤️❤️❤️❤️
September 24, 2020
I listened to the audiobook from the library. This nonfiction book is written by a resident assistant in a memory care nursing facility. Alzheimer’s is devastating, but the author covers all the facets of the disease, including the joys and sorrows of caregiving. Recommended.
October 13, 2021
I really enjoyed this book, though I’m sort of surprised that the title references rose instead of Eloise. Dancing with rose was about a few paragraphs of this book, but Eloise seemed to be much more influential on the author.
This entire review has been hidden because of spoilers.
December 21, 2017
Anyone dealing with someone with dementia would benefit by reading this book.
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