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On Vanishing: Mortality, Dementia, and What It Means to Disappear
For fans of Atul Gawande’s Being Mortal, Eula Biss’s On Immunity, and Paul Kalanithi’s When Breath Becomes Air, On Vanishing offers an essential, empathic exploration of dementia, and in the process asks searching questions about what it means to face our own inevitable vanishing
An estimated 50 million people in the world suffer from dementia. Diseases such as Alzheimer’s erase parts of one’s memory but are also often said to erase the self. People don’t simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On Vanishing, Lynn Casteel Harper, a Baptist minister and nursing home chaplain, investigates the myths and metaphors surrounding dementia and aging, addressing not only the indignities caused by the condition but also by the rhetoric surrounding it. Harper asks essential questions about the nature of our outsize fear of dementia, the stigma this fear may create, and what it might mean for us all to try to “vanish well.”
Weaving together personal stories with theology, history, philosophy, literature, and science, Harper confronts our elemental fears of disappearance and death, drawing on her own experiences with people with dementia both in the U.S. health-care system and within her own family. In the course of unpacking her own stories and encounters—of leading a prayer group on a dementia unit; of meeting individuals dismissed as “already gone” and finding them still possessed of complex, vital inner lives; of witnessing her grandfather’s final years with Alzheimer’s and discovering her own heightened genetic risk of succumbing to the disease—Harper engages in an exploration of dementia that is unlike anything written before on the subject.
Expanding our understanding of dementia beyond progressive vacancy and dread, On Vanishing makes room for beauty and hope, and opens a space in which we might start to consider better ways of caring for, and thinking about, our fellow human beings. It is a rich and startling work of nonfiction that reveals cognitive change as an essential aspect of what it means to be mortal.
An estimated 50 million people in the world suffer from dementia. Diseases such as Alzheimer’s erase parts of one’s memory but are also often said to erase the self. People don’t simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On Vanishing, Lynn Casteel Harper, a Baptist minister and nursing home chaplain, investigates the myths and metaphors surrounding dementia and aging, addressing not only the indignities caused by the condition but also by the rhetoric surrounding it. Harper asks essential questions about the nature of our outsize fear of dementia, the stigma this fear may create, and what it might mean for us all to try to “vanish well.”
Weaving together personal stories with theology, history, philosophy, literature, and science, Harper confronts our elemental fears of disappearance and death, drawing on her own experiences with people with dementia both in the U.S. health-care system and within her own family. In the course of unpacking her own stories and encounters—of leading a prayer group on a dementia unit; of meeting individuals dismissed as “already gone” and finding them still possessed of complex, vital inner lives; of witnessing her grandfather’s final years with Alzheimer’s and discovering her own heightened genetic risk of succumbing to the disease—Harper engages in an exploration of dementia that is unlike anything written before on the subject.
Expanding our understanding of dementia beyond progressive vacancy and dread, On Vanishing makes room for beauty and hope, and opens a space in which we might start to consider better ways of caring for, and thinking about, our fellow human beings. It is a rich and startling work of nonfiction that reveals cognitive change as an essential aspect of what it means to be mortal.
240 pages, Hardcover
First published April 14, 2020
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Displaying 1 - 30 of 89 reviews
May 12, 2020
Thank you to Catapult Publishing for the opportunity to read and review this book.
On Vanishing is part personal narrative as well as a humane and compassionate treatise on the treatment of patients suffering from dementia. Much food for thought here and beautifully, movingly written. It gives me hope that there could be viable alternatives to caring for and preserving the dignity of those suffering from the heartbreaking, isolating aspects of dementia.
On Vanishing is part personal narrative as well as a humane and compassionate treatise on the treatment of patients suffering from dementia. Much food for thought here and beautifully, movingly written. It gives me hope that there could be viable alternatives to caring for and preserving the dignity of those suffering from the heartbreaking, isolating aspects of dementia.
February 13, 2021
A thoughtful and carefully written account of dementia from the perspective of a chaplain. Accordingly, this is much more personal experience of serving people with dementia, rather than a scientific or practical exploration of the disease (or, more accurately, the mental state that the vast majority of us will find ourselves in later in life). I appreciated her point of view and emphasis that those with dementia are not “gone” but rather in a final stage of life, marked by a disappearance of language, memory, logic, and so forth. I also enjoyed the chapter that shared Ralph Waldo Emerson’s struggle with dementia and the healthier perspective of the time about his condition (rather than a disease to be cured and battled, dementia was more accepted as a natural state that all old people would eventually find themselves in). I thought many of Casteel Harper’s examples were superfluous (telling us about seeing Mt. Sinai at sunrise, many long-winded meditations on art) and seemed wholly unrelated to the subject matter, and she often seems very proud of some poetic constructions that didn’t add much. Still, grateful I read it, as I continue adding to my library of books about end-of-life matters, which attract me strangely in this season. Many thanks to Celeste for the recommendation.
May 12, 2020
I am conflicted on if this is a 4 or 5 star read - but that is not the point. This book equally reaffirmed all of my beliefs about dementia & mortality while also pushing me to a new & higher thinking. It might not be for everyone, but given my work I can’t think of a more important book that I’ve read recently. “Vanishing” be it in death, dementia, or both is beautiful - & a part of life all of us will face eventually. Happy to see a work like this exists to challenge society’s views.
“What I am trying to say is this: I declare my will to live with dementia as an act of protest against a dominant culture that wishes not to be troubled by my presence.” - Lynn Casteel Harper
“What I am trying to say is this: I declare my will to live with dementia as an act of protest against a dominant culture that wishes not to be troubled by my presence.” - Lynn Casteel Harper
January 1, 2020
A smart, cogent, and deeply felt exploration of life on with dementia, whether lived or witnessed—an act of empathy and a powerful call for inclusion.
September 12, 2022
Poorly organized, poorly articulated book exploring Alzheimer's disease. Her main point is the mental decline associated with Alzheimer's is not really diminishment and does not deserve the social stigmatization that it receives. At several points, she condemns those that chose to end their lives rather than suffer catastrophic mental decline. I think my major struggle with her thesis is that she defines her personhood as her spirit, or soul, instead of her mind. So, when the mind declines, she views it as just making room for other aspects of your spirit to emerge. For me, I define my being as my mind and found her anecdotal stories of charming interactions with people with advanced dementia, and severe mental incapacity, to be both condensing and trivial. She also extensively used bible stories to justify and illustrate the legitimacy of her points, which is completely unconvincing and non-rigorous. The only point I agreed with her on was that the treatment options should be steered toward more personalized care but she offered no implementation strategy for this option, which is tremendously more expensive and difficult to administer. Important topic but was hoping for something more rigorous and scientific.
September 16, 2023
Interesting view on dementia and mortality from a baptist minister. Although I don't agree with everything and have a more medical than spiritual point of view, I did enjoy the book and found many points she makes very interesting and compelling. I would have liked a bit more nuance.
June 14, 2020
I picked up this book hoping that it would help reframe my perspective towards dementia and Alzheimer’s disease. The author presented some helpful ideas in her aim to humanize people with Alzheimer’s and remove some of the stigma and anxiety surrounding the disease (e.g. understanding how the language we use to talk about dementia creates dread and ultimately ostracizes the people affected by it). Though the first and last two chapters did offer some insight, I found the rest of book overly philosophical and heavy with unhelpful passages diving into tangentially-related metaphors. As a non-Christian, I was also put off by the wide use of religious anecdotes (though I knew the book was written by a minister when I bought it, so that one’s probably on me). To be totally honest, this book was challenging to read and despite taking away a few helpful ideas, it wasn’t for me. People more inclined towards religious and philosophical texts might get more out of it than I did.
May 30, 2020
Made me think about how I perceive anything related to mental illness in others. How the stigmatized cultural environment shapes our thoughts on such matters. It is beautifully written about Dementia, "The problem is not that the people forget, it is that they are forgotten." The book tells people how the social response to the Alzheimer's/Dementia has effects much worse than the disease itself. A good read.
May 28, 2020
I read this book for some insight but didn’t feel I really got anything from it.
January 1, 2021
I found this book to be quite provocative; I am still thinking about it several weeks after finishing. While a bit uneven (second half > first half), Harper's memoir bears witness to the suffering and transformation of people with dementia and explores important questions about memory, aging, and tolerating inevitable change. I wondered if the book would have benefited from loosening up its form a bit and wished the moments of ekphrasis were a bit more organic. However, I really enjoyed this book and hope it receives a wide readership beyond just the chaplain and caregiver crowd.
July 28, 2020
As the minds and memories of people with dementia fade, the individuals also fade from society. Other people pay less attention to them and what they have to offer. Lynn Casteel Harper’s beloved grandfather died with Alzheimer’s, and she likely carries the genes for it too. I had high hopes for this book, but was disappointed. It’s repetitive and rambling. The meat of it could easily be edited down to a reasonable magazine article.
March 31, 2021
Started and stopped reading several times. Personal accounts were sometimes interesting, but it didn’t seem to give me new information.
January 15, 2021
Un livre sur un sujet important (comment sont considérées les personnes âgées socialement en particulier celleux atteint-e-s d'Alzheimer) mais d'une manière un peu trop superficielle. Je pense qu'1/3 du livre traite vraiment de ça, et ces parties sont extrêmement intéressantes. Je partage la vision éthique de l'autrice, ses critiques des familles qui laissent leurs personnes sans visite sous prétexte que l'identité d'une personne se résume à sa capacité à se souvenir. Elle évoque aussi le somnambulisme et les souvenirs de nos rêves pour aider à créer une forme d'empathie et de compréhension envers les malades d'Alzheimer, le sentiment de colère et de tristesse qui s'emparent des familles lorsqu'elles ne sont plus reconnues par le malade. Mais aussi la joie et l'apaisement que ces malades ressentent et expriment lorsqu'ils sont visités, et l'importance d'être présent pour eux malgré tout, car ils restent bel et bien des gens qu'on a aimé, même s'ils ne s'en souviennent pas toujours. Et de l'importance de se projeter dans l'avenir comme "quand j'aurais alzheimer" et pas "si". Globalement, elle milite pour une acceptation de la maladie et la sénilité comme une expérience importante de l’existence humaine, au même titre que la mort, et encourage ses lecteur-ice-s à adopter cette démarche, plutôt que d'en avoir peur ou de le fuir. C'est super intéressant, mais ça ne va pas plus loin.
L'autrice est une chapelaine d'une sous branche du catholicisme (je crois? j'ai du mal avec les cultes chrétiens aux USA) et elle s'exprime donc de la position de quelqu'un qui a été mandé en maison de retraites pour les patients croyants, tout en ayant perdu son grand-père, lui-même atteint d'Alzheimer. Beaucoup de passages concernent la religion, son rapport à la religion, comment est traité le sénilité dans la Bible, qui ne m'ont pas du tout intéressé. Son vécu lié au décès de son grand-père est touchant, mais pareil, j'étais pas spécialement intéressé par son histoire familiale. Je pense que si j'avais cerné tout ça avant de me lancer dans la lecture du livre, j'aurais été moins déçue de l'ouvrage, qui du coup ne répond pas vraiment à mes attentes, même s'il m'a déclenché une prise de conscience intéressante sur ces questions (ça me rappelle ma lecture des livres de Caitlin Doughty, qui parle de comment sont traités les morts et les cadavres, donc sujet super intéressant, mais qui entremêle la moitié de ses ouvrages à parler de sa vie, moins intéressant).
L'autrice est une chapelaine d'une sous branche du catholicisme (je crois? j'ai du mal avec les cultes chrétiens aux USA) et elle s'exprime donc de la position de quelqu'un qui a été mandé en maison de retraites pour les patients croyants, tout en ayant perdu son grand-père, lui-même atteint d'Alzheimer. Beaucoup de passages concernent la religion, son rapport à la religion, comment est traité le sénilité dans la Bible, qui ne m'ont pas du tout intéressé. Son vécu lié au décès de son grand-père est touchant, mais pareil, j'étais pas spécialement intéressé par son histoire familiale. Je pense que si j'avais cerné tout ça avant de me lancer dans la lecture du livre, j'aurais été moins déçue de l'ouvrage, qui du coup ne répond pas vraiment à mes attentes, même s'il m'a déclenché une prise de conscience intéressante sur ces questions (ça me rappelle ma lecture des livres de Caitlin Doughty, qui parle de comment sont traités les morts et les cadavres, donc sujet super intéressant, mais qui entremêle la moitié de ses ouvrages à parler de sa vie, moins intéressant).
January 15, 2023
I went into this book expecting it to be a traditional nonfiction about the science behind dementia. While it does contain some scientific information, I would categorize it more with books like The Body Keeps the Score, Tattoos on the Heart, or The Best Care Possible - a compelling mix of memoir, history, and social commentary. The idea that people with dementia deserve to be treated with the same dignity as all other humans is (sadly) radical, and this book aligns well the disability rights/activism movements - especially the idea that disability is something that is inevitable for almost all people. This book forces you to confront and examine your beliefs about dementia, aging, and what it means to be "mentally sound". Is someone with dementia really vanishing, or are they just entering the next chapter of a fully normal human existence? Is mental decline a curse to be feared, or a gift to be celebrated? Harper makes a compelling argument for the latter of those opinions.
The low-rated reviews here criticize the aspects of the book that I found most interesting and engaging. If you are looking for a more scientific account of dementia, or your beliefs about the human mind and spirit are set in stone, I'd recommend looking elsewhere. But if you are willing to confront your beliefs and consider new viewpoints, this book might be a good fit.
The low-rated reviews here criticize the aspects of the book that I found most interesting and engaging. If you are looking for a more scientific account of dementia, or your beliefs about the human mind and spirit are set in stone, I'd recommend looking elsewhere. But if you are willing to confront your beliefs and consider new viewpoints, this book might be a good fit.
December 14, 2025
This wasn’t quite what I was looking for, but it was still an interesting read. The book definitely is more philosophical and religious, rather than providing more scientific information or even strategies/ best practices for caregiving.
December 17, 2020
3.75
excellent message + writing, but as a not very religious person, some parts went over my head
excellent message + writing, but as a not very religious person, some parts went over my head
January 18, 2023
I found this so helpful as I navigate my mother's dementia with her and my family. Opened up so much space around seeing her change but NOT vanish.
February 6, 2023
i guess, like it or not, we all die eventually somehow someway, then get dug up and molested
April 9, 2020
Have to be honest, this book was a lot more like a memoir than I expected. Perhaps because of that, I found the first half somewhat lackluster and jumbled, with some of the comparisons and lengthy metaphors seeming like stretches. However, I liked the second half much better than the first and felt that it seemed like it formed a more cohesive whole.
Harper makes good arguments for a re-evaluation of how we see dementia and this is a good and necessary book, but since she's a minister, she does make a lot of Bible references. I came around to that eventually, and they are very thoughtful ways of looking at Christian scriptures, but if those aren't your thing, you might find this not quite up your alley. With that being said, she does take a good look at the experience of living with dementia and our cultural perceptions of it through a variety of disciplines, though there's definitely an emphasis on spirituality.
I might have enjoyed something that looked at worldwide conceptions of dementia and was more expansive in scope a little better, but the concerns Harper lists do seem to primarily be with regards to the American health care system, so I suppose my expectations for this book didn't quite match what it attempted to do. I definitely found the last few chapters- chapters six through nine- to be especially strong and what led to me rating this four stars.
Harper makes good arguments for a re-evaluation of how we see dementia and this is a good and necessary book, but since she's a minister, she does make a lot of Bible references. I came around to that eventually, and they are very thoughtful ways of looking at Christian scriptures, but if those aren't your thing, you might find this not quite up your alley. With that being said, she does take a good look at the experience of living with dementia and our cultural perceptions of it through a variety of disciplines, though there's definitely an emphasis on spirituality.
I might have enjoyed something that looked at worldwide conceptions of dementia and was more expansive in scope a little better, but the concerns Harper lists do seem to primarily be with regards to the American health care system, so I suppose my expectations for this book didn't quite match what it attempted to do. I definitely found the last few chapters- chapters six through nine- to be especially strong and what led to me rating this four stars.
January 6, 2025
Required reading for mortals.
June 22, 2020
Meh. There're some interesting ideas in this book but that's about it. Feels like the author's trying to be thoughtful but she ultimately ends up making the same point over and over again.
The writing is kinda jarring.
The writing is kinda jarring.
April 10, 2022
The author makes some points worth considering about society's perspective on aging and the frail. It's all uncomfortable for most of us. Caregiving in general deserves more attention for sure and residential care needs a makeover. That being said, I don't feel like becoming comfortable with the potential of developing Alzheimer's. Plain and simple: it is horrible. I'm going to eat blueberries until I turn blue.
My mom is in her late 60s and is in the moderate stages of Alzheimer's, quickly moving towards severe. It is harrowing to experience: she abhored her cognitive decline and while we still get glimpses of her kind and funny personality, there is so much lost. We are all grieving, but my dad is not only grieving, but also patiently caregiving. I'll spare you the details. It is an enormous undertaking for our family (especially him) and that's not even touching on the emotional aspects. I hate this for her and for all of us.
I read the first few chapters of this book and then I decided to skim the rest because it's not for me. I have too much skin in this game right now. On Vanishing seemed like more of an outsider's perspective with some poetic philosophy and it seems like it could pile guilt on people who don't need any more weight on their shoulders.
I don't intend to be harsh because I appreciate the author's care for people with memory problems and the elderly in general. That's fantastic! However, I'd be careful about recommending it to caregivers and people whose loved ones have Alzheimer's.
My mom is in her late 60s and is in the moderate stages of Alzheimer's, quickly moving towards severe. It is harrowing to experience: she abhored her cognitive decline and while we still get glimpses of her kind and funny personality, there is so much lost. We are all grieving, but my dad is not only grieving, but also patiently caregiving. I'll spare you the details. It is an enormous undertaking for our family (especially him) and that's not even touching on the emotional aspects. I hate this for her and for all of us.
I read the first few chapters of this book and then I decided to skim the rest because it's not for me. I have too much skin in this game right now. On Vanishing seemed like more of an outsider's perspective with some poetic philosophy and it seems like it could pile guilt on people who don't need any more weight on their shoulders.
I don't intend to be harsh because I appreciate the author's care for people with memory problems and the elderly in general. That's fantastic! However, I'd be careful about recommending it to caregivers and people whose loved ones have Alzheimer's.
Read
July 22, 2020Explicitly religious. Hard to follow, seems to be to be disjointed. More one christian chaplain using religion to come to terms with her work and genetic predisposition than a real window into the lives of those who live with dementia. Not for me.
November 16, 2022
“The conjunctive nature of dementia challenges us to contain multitudes, to live between gone and not gone, between departures and arrivals — to accept the ands.”
In a valiant effort to educate and quell some of the stigma around dementia, On Vanishing was a really lovely walk through Casteel’s experience as a chaplain and exploring the way people view dementia. I quite enjoyed this book - poignant. Boring at times and it took me forever to read, but I overall found this very reflective. As someone whose loved one had dementia, this book helps me see that even if it felt like they were gone, “that vanishing is still life”
In a valiant effort to educate and quell some of the stigma around dementia, On Vanishing was a really lovely walk through Casteel’s experience as a chaplain and exploring the way people view dementia. I quite enjoyed this book - poignant. Boring at times and it took me forever to read, but I overall found this very reflective. As someone whose loved one had dementia, this book helps me see that even if it felt like they were gone, “that vanishing is still life”
January 7, 2024
Ever since a beloved elderly family member was diagnosed with advanced Alzheimer's a few months ago, I've been reading books on the topic, to try to get a sense of what the world is like for her and others diagnosed with dementia. And like many people middle-aged and older, I worry that I might be one of the 37% who develop some form of dementia by the time we reach our 90s. Surveys shows that many people fear Alzheimer's more than they fear cancer.
As a chaplain working with older adults, Harper explores the cultural beliefs and biases associated with dementia. For personal reasons, she views dementia as almost an inevitability, suggesting that there are two kinds of people in the world--those who now have dementia, and those who do not yet have it. Who is at risk? "Anyone who plans to grow old." She has changed her personal lexicon from "if I get to dementia" to "when I get dementia." (pp. 192-193)
I am not quite that pessimistic.
Nevertheless, the book is useful. The author begins by explaining the basic science behind dementia as it's currently understood. "The cells that comprise our bodies routinely break down or slough off and new ones take their place. Some cells, like neurons, die and are never replaced." (p. 19) That accounts for the memory loss, word loss, confusion, anxiety, delusions, and other cognitive/emotional effects of the condition.
The author's best writing comes when she cites other researchers in the field: "The memory lapses experienced by Alzheimer's patients is similar to the poor memory we have of dreams once we awaken from them." (p.137) Others compare dementia as inhabiting a world between sleep and awakeness. Those insights, she says, serve as empathetic portals to the world of dementia. (p. 138)
So far, so good. The author goes on to posit that the caregiving community is undergoing (or needs to undergo) a shift in the cultural views of the condition, from viewing persons with dementia as problems to be managed, in need of physical care only, to that of complex individuals living within complex social environments.
A large part of the author's message is to change the way dementia is viewed, starting with how people with dementia are referred to and treated. They are "persons with dementia" and "people diagnosed with dementia," not "dementia victims" or "sufferers."
The author takes issue with other cultural biases that, she says, actually accelerate neurological decline in the vulnerable: infantilization, stigmatization, banishment, objectification, disparagement, and other negative attitudes. She cites researchers who point out that as the degree of neurological impairment increases, the person's need for psychosocial care increases. Yet what traditionally happens is the opposite--neglect and isolation, which increase neurological impairment. Conversely, person centered, individual care decreases depression, agitation, loneliness, boredom, and helplessness. She labels this "social death." "On top of physical and mental losses, persons with dementia often suffer social losses." (p. 164) Thus, the title of the book "On Vanishing."
In the second half of the book, the author goes so far as to explore the concept of dementia as a sort of spiritual gift, opening up new and uplifting avenues of insight for the individual. Her aim is to give people with dementia, people who are worried that they will be burdens to their families, and others an alternative to three commonplace ways of dealing with the prospect of dementia: "naïve denial, grim resignation, or life-ending escape." (p. 202) This is where she loses me, primarily because her prose shifts from logical and almost scholarly to rambling and speculative.
At one point, Harper offers one concrete piece of practical advice for those worried they are at risk or who are showing early signs of cognitive lapses: Write a living will with specific instructions should things go off the rails. Approach the task like a vision statement, she says, with very specific language, not just checked boxes: "If I cannot feed myself, I do not want to be fed." (p. 203) If the author had offered more of such wisdom, I would have given the book more stars.
The author concludes by advocating for a more dementia-friendly (and therefore human-friendly) world. Easier said than done. "I confess that most of the programs I plan assume a high level of cognitive ability. It is hard to keep in mind the needs of those we don't regularly see. And we don't regularly see the people for whom our communities are not designed." (pp. 215-216)
I can certainly relate to that: I'm in my eighth decade of life and fairly proficient with technology. But so often, I find myself baffled and frustrated by tasks of modern life that used to be simple: self-checkout kiosks to buy groceries, electronic parking meters to park my car, using QR codes to read menus, etc. Imagine how difficult navigating such tasks are for people with even mild cognitive impairment? No wonder old people are isolated and depressed.
The pragmatist in me wonders just how that dementia-friendly world might be accomplished. Maybe that's another book.
As a chaplain working with older adults, Harper explores the cultural beliefs and biases associated with dementia. For personal reasons, she views dementia as almost an inevitability, suggesting that there are two kinds of people in the world--those who now have dementia, and those who do not yet have it. Who is at risk? "Anyone who plans to grow old." She has changed her personal lexicon from "if I get to dementia" to "when I get dementia." (pp. 192-193)
I am not quite that pessimistic.
Nevertheless, the book is useful. The author begins by explaining the basic science behind dementia as it's currently understood. "The cells that comprise our bodies routinely break down or slough off and new ones take their place. Some cells, like neurons, die and are never replaced." (p. 19) That accounts for the memory loss, word loss, confusion, anxiety, delusions, and other cognitive/emotional effects of the condition.
The author's best writing comes when she cites other researchers in the field: "The memory lapses experienced by Alzheimer's patients is similar to the poor memory we have of dreams once we awaken from them." (p.137) Others compare dementia as inhabiting a world between sleep and awakeness. Those insights, she says, serve as empathetic portals to the world of dementia. (p. 138)
So far, so good. The author goes on to posit that the caregiving community is undergoing (or needs to undergo) a shift in the cultural views of the condition, from viewing persons with dementia as problems to be managed, in need of physical care only, to that of complex individuals living within complex social environments.
A large part of the author's message is to change the way dementia is viewed, starting with how people with dementia are referred to and treated. They are "persons with dementia" and "people diagnosed with dementia," not "dementia victims" or "sufferers."
The author takes issue with other cultural biases that, she says, actually accelerate neurological decline in the vulnerable: infantilization, stigmatization, banishment, objectification, disparagement, and other negative attitudes. She cites researchers who point out that as the degree of neurological impairment increases, the person's need for psychosocial care increases. Yet what traditionally happens is the opposite--neglect and isolation, which increase neurological impairment. Conversely, person centered, individual care decreases depression, agitation, loneliness, boredom, and helplessness. She labels this "social death." "On top of physical and mental losses, persons with dementia often suffer social losses." (p. 164) Thus, the title of the book "On Vanishing."
In the second half of the book, the author goes so far as to explore the concept of dementia as a sort of spiritual gift, opening up new and uplifting avenues of insight for the individual. Her aim is to give people with dementia, people who are worried that they will be burdens to their families, and others an alternative to three commonplace ways of dealing with the prospect of dementia: "naïve denial, grim resignation, or life-ending escape." (p. 202) This is where she loses me, primarily because her prose shifts from logical and almost scholarly to rambling and speculative.
At one point, Harper offers one concrete piece of practical advice for those worried they are at risk or who are showing early signs of cognitive lapses: Write a living will with specific instructions should things go off the rails. Approach the task like a vision statement, she says, with very specific language, not just checked boxes: "If I cannot feed myself, I do not want to be fed." (p. 203) If the author had offered more of such wisdom, I would have given the book more stars.
The author concludes by advocating for a more dementia-friendly (and therefore human-friendly) world. Easier said than done. "I confess that most of the programs I plan assume a high level of cognitive ability. It is hard to keep in mind the needs of those we don't regularly see. And we don't regularly see the people for whom our communities are not designed." (pp. 215-216)
I can certainly relate to that: I'm in my eighth decade of life and fairly proficient with technology. But so often, I find myself baffled and frustrated by tasks of modern life that used to be simple: self-checkout kiosks to buy groceries, electronic parking meters to park my car, using QR codes to read menus, etc. Imagine how difficult navigating such tasks are for people with even mild cognitive impairment? No wonder old people are isolated and depressed.
The pragmatist in me wonders just how that dementia-friendly world might be accomplished. Maybe that's another book.
December 31, 2025
I highly recommend this thought-provoking book by nursing-home chaplain Lynn Casteel Harper, a beautiful series of meditative essays on our society’s treatment of people with dementia. Noting that one in nine people over age 65 has Alzheimer’s, and that one in three have it past age 85, she asks us to consider why we treat sufferers as if they are already gone or “vanishing,” putting them out of sight in facilities and talking about and over them as if they aren’t there. Harper quotes a gerontologist who reminds caregivers that their loved ones are still people, and she wonders why this is necessary. Infants, though they cannot talk or toilet themselves, are obviously human and are treated as such; why is the same not true for patients with dementia?
I don’t like to think I treat my mother as if she has been disappeared by her illness, but this may be easier for me because my mother is still self-aware and verbally fluent. She has a lot of short-term memory issues, but she knows who I am and remembers when I visit (and complains if more than a day or two passes between my visits). If anything, her ability to still seem like my mother, to still seem like someone I can reason with, makes her disease more frustrating to me, as when she becomes paranoid, illogical, or unable to follow instructions, I have trouble remembering that her confusion or failure to take care of herself is outside her control.
The book made me think about how unforgiving I have felt toward my mother for putting my little sister in an institution, Willowbrook, because, she claimed, she just couldn’t care for a child with severe disabilities. If I believe my mother should have been able to care for such a child, to treat her with love and accept her just as she was, then why shouldn’t I be able to continue to treat my mother with love and accept her just as she is, however impaired she becomes? This question gives me more compassion for my mother, both as she was then and as she is now.
Harper notes that assisted suicide is often considered acceptable for people facing dementia, and she wonders why this illness is considered less tolerable than other progressive illnesses—why people might be encouraged to disappear themselves before the disease disappears them. Observing that killing oneself before one can become infirm is part of a fascist impulse to crush the weak, she notes a blurriness between “exterminating weakness and alleviating suffering.”
Citing a book by social psychologist Tom Kitwood, Dementia Reconsidered: The Person Comes First, she notes that dementia likely progresses more quickly due to our cultural bigotry, our unwillingness to want to engage with people with dementia as people. “Malignant responses to dementia, in Kitwood’s analysis, revealed tragic inadequacies in our culture, economy, and medical system, which often define a person’s worth in terms of financial, physical, and intellectual power.” Later Harper observes that “mystics might say what is left is a truer, purer self. The dissolving of all doing, the stripping away of the via activa, makes straight the path for the naked, beloved self to emerge.”
About 70% of assisted living facility residents, Harper tells us, have some form of cognitive impairment, yet because assisted living is underregulated, with residents expected to manage their own daily care, those with dementia are especially vulnerable to not getting the care they need. (This is certainly true for my mother, but as the alternative is a nursing home, where I fear she would be even more neglected and where I know she would be more unhappy, I am practicing gratitude for the situation she’s in.)
“I suspect those bodies in need of hands-on care by others are objects of cultural contempt because they lay bare our collective fear of the body’s fragility and dependence,” Harper says, noting their caregivers “bear the taint,” and are among “the most economically vulnerable and politically invisible people in American society.” We place a low cultural value on caregiving of the elderly, done mostly by women of color, in part because we place a low cultural value on the people receiving their care.
I could go on quoting the wisdom in this book, but instead I’ll encourage you to read it. Not every essay spoke to me, but the ones that did were profound enough to make the whole book worthwhile.
I don’t like to think I treat my mother as if she has been disappeared by her illness, but this may be easier for me because my mother is still self-aware and verbally fluent. She has a lot of short-term memory issues, but she knows who I am and remembers when I visit (and complains if more than a day or two passes between my visits). If anything, her ability to still seem like my mother, to still seem like someone I can reason with, makes her disease more frustrating to me, as when she becomes paranoid, illogical, or unable to follow instructions, I have trouble remembering that her confusion or failure to take care of herself is outside her control.
The book made me think about how unforgiving I have felt toward my mother for putting my little sister in an institution, Willowbrook, because, she claimed, she just couldn’t care for a child with severe disabilities. If I believe my mother should have been able to care for such a child, to treat her with love and accept her just as she was, then why shouldn’t I be able to continue to treat my mother with love and accept her just as she is, however impaired she becomes? This question gives me more compassion for my mother, both as she was then and as she is now.
Harper notes that assisted suicide is often considered acceptable for people facing dementia, and she wonders why this illness is considered less tolerable than other progressive illnesses—why people might be encouraged to disappear themselves before the disease disappears them. Observing that killing oneself before one can become infirm is part of a fascist impulse to crush the weak, she notes a blurriness between “exterminating weakness and alleviating suffering.”
Citing a book by social psychologist Tom Kitwood, Dementia Reconsidered: The Person Comes First, she notes that dementia likely progresses more quickly due to our cultural bigotry, our unwillingness to want to engage with people with dementia as people. “Malignant responses to dementia, in Kitwood’s analysis, revealed tragic inadequacies in our culture, economy, and medical system, which often define a person’s worth in terms of financial, physical, and intellectual power.” Later Harper observes that “mystics might say what is left is a truer, purer self. The dissolving of all doing, the stripping away of the via activa, makes straight the path for the naked, beloved self to emerge.”
About 70% of assisted living facility residents, Harper tells us, have some form of cognitive impairment, yet because assisted living is underregulated, with residents expected to manage their own daily care, those with dementia are especially vulnerable to not getting the care they need. (This is certainly true for my mother, but as the alternative is a nursing home, where I fear she would be even more neglected and where I know she would be more unhappy, I am practicing gratitude for the situation she’s in.)
“I suspect those bodies in need of hands-on care by others are objects of cultural contempt because they lay bare our collective fear of the body’s fragility and dependence,” Harper says, noting their caregivers “bear the taint,” and are among “the most economically vulnerable and politically invisible people in American society.” We place a low cultural value on caregiving of the elderly, done mostly by women of color, in part because we place a low cultural value on the people receiving their care.
I could go on quoting the wisdom in this book, but instead I’ll encourage you to read it. Not every essay spoke to me, but the ones that did were profound enough to make the whole book worthwhile.
January 7, 2024
Quoting gerontologist Anne Davis Basting who once said “We can learn to feel more than fear,” the author of this book believes we need to change the way we think and speak about dementia and Alzheimer’s.
Lynn Casteel Harper has spent years as a chaplain working in dementia and memory units of care facilities, and her book is a plea for a more nuanced look at this heartbreaking disease that effects the lives of so many people. She feels the language of vacancy that surrounds it and the damaging metaphors we use (she’s fading away, his mind is gone, the lights have gone out and nobody’s home, etc) only serve to reinforce its notorious reputation.
But those of us who have had the anguishing experience of watching someone we love retreat further and further into the fog of dementia know how difficult it is to find other words for what we are seeing, as well as how easy it is to wonder about our own chances of developing what is the second most feared disease (cancer is #1).
Casteel Harper shares these concerns. She writes about her anguish during her grandfather’s final years with Alzheimer's, along with the knowledge that she herself is at a heightened risk for succumbing to the same disease. She explains how she has decided to think in terms of when I have dementia rather than if I ever have dementia because she wants to close the gap between people who have dementia now and those of us who do not yet have it. She feels using the word “when” might open the way to more empathy and understanding towards those who are currently afflicted with dementia, as well as become a means for dealing with the stigma attached to it and the fear that we too might well develop the disease.
She points out that we do people with dementia a huge disservice by language and attitudes that deny them their identities - as though the real person is the pre-dementia person and they have become someone other than who they have always been. “They are seen as disease sufferers, confused patients, passive victims, while cherished, long-standing roles, such as loyal friend, involved parent, dutiful worker are no longer readily recognized or supported.”
The book is filled with examples, including a touching account of how one of our country’s most renowned authors, thinkers and philosophers, Ralph Waldo Emerson, succumbed to the disease at a time when little was known about it. “My memory hides itself” he once said as he struggled to recall words for familiar objects, relying instead on what he remembered about them. Unable to remember the word for “railroad,” he called it “the thing that goes to and fro”. Similarly he referred to a “plow” as “that thing that cultivates the soil,” and when taken to the funeral of his friend Henry Wadsworth Longfellow, Emerson remarked “that gentleman was a sweet, beautiful soul, but I have entirely forgotten his name.”
Casteel Harper reminds us that while dementia is indeed a terrible disease, the negative language that surrounds it only serves to deepen our own anxieties and fears while denying its sufferers the “ palpable life force that abides. . . sometimes a discomforting life, but a life to encounter, engage and know nonetheless.”
Her book is full of references to other books about dementia, including some that were written by persons in its early stages. While it would have been helpful had they all been listed in an appendix, that’s a minor criticism of a thoughtfully written book that is well worth reading for anyone who is concerned about this terrible disease – and that includes just about all of us.
Lynn Casteel Harper has spent years as a chaplain working in dementia and memory units of care facilities, and her book is a plea for a more nuanced look at this heartbreaking disease that effects the lives of so many people. She feels the language of vacancy that surrounds it and the damaging metaphors we use (she’s fading away, his mind is gone, the lights have gone out and nobody’s home, etc) only serve to reinforce its notorious reputation.
But those of us who have had the anguishing experience of watching someone we love retreat further and further into the fog of dementia know how difficult it is to find other words for what we are seeing, as well as how easy it is to wonder about our own chances of developing what is the second most feared disease (cancer is #1).
Casteel Harper shares these concerns. She writes about her anguish during her grandfather’s final years with Alzheimer's, along with the knowledge that she herself is at a heightened risk for succumbing to the same disease. She explains how she has decided to think in terms of when I have dementia rather than if I ever have dementia because she wants to close the gap between people who have dementia now and those of us who do not yet have it. She feels using the word “when” might open the way to more empathy and understanding towards those who are currently afflicted with dementia, as well as become a means for dealing with the stigma attached to it and the fear that we too might well develop the disease.
She points out that we do people with dementia a huge disservice by language and attitudes that deny them their identities - as though the real person is the pre-dementia person and they have become someone other than who they have always been. “They are seen as disease sufferers, confused patients, passive victims, while cherished, long-standing roles, such as loyal friend, involved parent, dutiful worker are no longer readily recognized or supported.”
The book is filled with examples, including a touching account of how one of our country’s most renowned authors, thinkers and philosophers, Ralph Waldo Emerson, succumbed to the disease at a time when little was known about it. “My memory hides itself” he once said as he struggled to recall words for familiar objects, relying instead on what he remembered about them. Unable to remember the word for “railroad,” he called it “the thing that goes to and fro”. Similarly he referred to a “plow” as “that thing that cultivates the soil,” and when taken to the funeral of his friend Henry Wadsworth Longfellow, Emerson remarked “that gentleman was a sweet, beautiful soul, but I have entirely forgotten his name.”
Casteel Harper reminds us that while dementia is indeed a terrible disease, the negative language that surrounds it only serves to deepen our own anxieties and fears while denying its sufferers the “ palpable life force that abides. . . sometimes a discomforting life, but a life to encounter, engage and know nonetheless.”
Her book is full of references to other books about dementia, including some that were written by persons in its early stages. While it would have been helpful had they all been listed in an appendix, that’s a minor criticism of a thoughtfully written book that is well worth reading for anyone who is concerned about this terrible disease – and that includes just about all of us.
January 1, 2022
"I don’t think Janet Adkins wanted to kill herself—rather, she wanted to kill her future self, the deteriorated self she imagined, the self she worried would put her family “through the agony of this terrible disease.”
Cerita Janet Adkins yang bunuh diri dengan eutanasia karena Alzheimer yang dideritanya adalah satu dari banyak refleksi yang bisa ditemukan dalam buku ini. Tentang bagaimana stigma terhadap penderita demensia sangat harmful. Demensia, seperti yang kita tahu, merupakan ‘payung’ bagi beberapa penyakit otak dan syaraf yang salah satu jenisnya adalah Alzheimer. Demensia atau sederhananya penyakit pikun.
Membaca buku ini karena keresahan pribadi yang menormalisasi cara pandang bahwa, ‘manusia yang tua dan pikun sudah biasa untuk diperlakukan agak lain’ atau didiskreditkan sebagai pribadi yang kompleks. Pikiran yang menakutkan, ya aku tahu. Dikutip dari buku, “The person with dementia does not simply disappear on her own. It is not just a matter of the private malfunctioning of her private brain. It has to do with our malfunctioning, our diseased public mind.” Jleb banget saat disebutkan tentang ‘our diseased public mind’ karena dalam satu atau dua titik aku pernah berada dikategori itu. Makanya, merasa butuh untuk meluruskan perspektif, akhirnya aku memilih buku ini. Dan terima kasih berkat 240 hlm. yang ada aku banyak tercerahkan.
Buku ini ditulis oleh chaplin (The chaplain's role is supportive, serving as a counsellor and guide to the psycho-spiritual needs of the staff and patients, penjelasan disadur dari cuh.nhs.uk). Beberapa konten dalam buku nyoba ngasih alternatif untuk sistem panti weda dan fasilitas kesehatan yang merawat penderita demensia, cara memahami perilaku penderita, dan dampak atas respon yang kita berikan pada lansia penderita demensia. Pengidap demensia mendapat cap mereka tak lagi berguna karena tidak bisa menjalankan fungsi sosialnya, sehingga memicu adanya malignancy. Atau keadaan yang disebut sebagai maligant response yang diakibatkan karena secara struktural kita dibentuk untuk berpikir apakah orang ini masih bermanfaat atau tidak, "which often define a person’s worth in terms of financial, physical, and intellectual power." Yang akhirnya, kembali ke topik sebelumnya, menjadi alasan kita menormalisasi perilaku buruk pada penderita.
Salah satu penjelasan yang ditawarkan oleh buku mengenai fenomena di atas adalah budaya hiperkognitif yang ia kutip dari Stephen Post “hypercognitive culture, to “exclude human beings from moral concern while they are still among the living.”
Selesai membaca buku On Vanishing aku memiliki pertanyaan seperti, “Saat seseorang mulai powerless dan kelihatan tidak bisa memberikan apa-apa untuk kita, bisakah kita tetap menganggapnya setara?”
Buku ini mengantarkanku pada alasan untuk kembali memanusiakan manusia. Dan itu alasan yang cukup untuk membuat kalian juga mulai membacanya.
Cerita Janet Adkins yang bunuh diri dengan eutanasia karena Alzheimer yang dideritanya adalah satu dari banyak refleksi yang bisa ditemukan dalam buku ini. Tentang bagaimana stigma terhadap penderita demensia sangat harmful. Demensia, seperti yang kita tahu, merupakan ‘payung’ bagi beberapa penyakit otak dan syaraf yang salah satu jenisnya adalah Alzheimer. Demensia atau sederhananya penyakit pikun.
Membaca buku ini karena keresahan pribadi yang menormalisasi cara pandang bahwa, ‘manusia yang tua dan pikun sudah biasa untuk diperlakukan agak lain’ atau didiskreditkan sebagai pribadi yang kompleks. Pikiran yang menakutkan, ya aku tahu. Dikutip dari buku, “The person with dementia does not simply disappear on her own. It is not just a matter of the private malfunctioning of her private brain. It has to do with our malfunctioning, our diseased public mind.” Jleb banget saat disebutkan tentang ‘our diseased public mind’ karena dalam satu atau dua titik aku pernah berada dikategori itu. Makanya, merasa butuh untuk meluruskan perspektif, akhirnya aku memilih buku ini. Dan terima kasih berkat 240 hlm. yang ada aku banyak tercerahkan.
Buku ini ditulis oleh chaplin (The chaplain's role is supportive, serving as a counsellor and guide to the psycho-spiritual needs of the staff and patients, penjelasan disadur dari cuh.nhs.uk). Beberapa konten dalam buku nyoba ngasih alternatif untuk sistem panti weda dan fasilitas kesehatan yang merawat penderita demensia, cara memahami perilaku penderita, dan dampak atas respon yang kita berikan pada lansia penderita demensia. Pengidap demensia mendapat cap mereka tak lagi berguna karena tidak bisa menjalankan fungsi sosialnya, sehingga memicu adanya malignancy. Atau keadaan yang disebut sebagai maligant response yang diakibatkan karena secara struktural kita dibentuk untuk berpikir apakah orang ini masih bermanfaat atau tidak, "which often define a person’s worth in terms of financial, physical, and intellectual power." Yang akhirnya, kembali ke topik sebelumnya, menjadi alasan kita menormalisasi perilaku buruk pada penderita.
Salah satu penjelasan yang ditawarkan oleh buku mengenai fenomena di atas adalah budaya hiperkognitif yang ia kutip dari Stephen Post “hypercognitive culture, to “exclude human beings from moral concern while they are still among the living.”
Selesai membaca buku On Vanishing aku memiliki pertanyaan seperti, “Saat seseorang mulai powerless dan kelihatan tidak bisa memberikan apa-apa untuk kita, bisakah kita tetap menganggapnya setara?”
Buku ini mengantarkanku pada alasan untuk kembali memanusiakan manusia. Dan itu alasan yang cukup untuk membuat kalian juga mulai membacanya.
September 15, 2022
This is an amazing book! Go. Read. It. Now.
My dad is starting to have some more pronounced memory issues. This book was on the Chautauqua historic book list. It was available at the library. Go time.
It's a great book that's a perfect mix to me of personal story, professional story, history, and philosophy/religion. The author is a chaplan in the Christian tradition, so at points in the book she comes from that perspective, but it's not heavy handed at all. And she quotes Thomas Merton at length, so I love her.
What I took from this book is how we see dementia and any cognitive "disability" as something to be put away, out of public site. That since they don't operate on our level, we don't include them. And operating on "their" level often reduces them to the role of a child, which is not humane either.
Our capitalistic society teaches us that we need to be useful and the usefulness is equated to our output and that is determined by our intellect. I lived this. I still live in this. And yet, I see how it is crap.
"If we envision the person as either moving toward emptiness or anguish, vacancy will win out every time as the more human vision. But too often we confine individuals with dementia to these two options, reducing persons in all their intricacies in order to fit them into the schema. The geography of the inner world defies such orderly mapping; we flatten the soul's contours when we persist in imagining only polarities."
"A disproportionate emphasis on cures often comes at the price of promoting, however unintentionally, stereotypes and stigma around Alzheimer's 'victims.'"
"With the rapid industrialization of late 19th century America, what were once considered natural aspects of advanced age came to have pejorative meanings; the demands of the new marketplace stigmatized those who were not physically and mentally able to adequately participate in an increasingly complex and bureaucratized system. ... The disease's stigma arose from the sufferers' inability to 'carry off their role as respectable middle class persons' which entailed presenting a 'stable and coherent self to others.'"
"And no one every gets over being orphaned, not at any age. No one stops searching for home or for her mother."
"Too often our clinging to life, especially to fixed notions of what the body and the mind should be and do, eventuates in an all-out fight against vanishing, morphing into a perpetual state of war against the inevitability of change. This grasping seems to fuel a toxic self-importance, a childish denial of our limitations, and the vain pursuit of 'making our mark' without deep consideration to the nature of those marks."
My dad is starting to have some more pronounced memory issues. This book was on the Chautauqua historic book list. It was available at the library. Go time.
It's a great book that's a perfect mix to me of personal story, professional story, history, and philosophy/religion. The author is a chaplan in the Christian tradition, so at points in the book she comes from that perspective, but it's not heavy handed at all. And she quotes Thomas Merton at length, so I love her.
What I took from this book is how we see dementia and any cognitive "disability" as something to be put away, out of public site. That since they don't operate on our level, we don't include them. And operating on "their" level often reduces them to the role of a child, which is not humane either.
Our capitalistic society teaches us that we need to be useful and the usefulness is equated to our output and that is determined by our intellect. I lived this. I still live in this. And yet, I see how it is crap.
"If we envision the person as either moving toward emptiness or anguish, vacancy will win out every time as the more human vision. But too often we confine individuals with dementia to these two options, reducing persons in all their intricacies in order to fit them into the schema. The geography of the inner world defies such orderly mapping; we flatten the soul's contours when we persist in imagining only polarities."
"A disproportionate emphasis on cures often comes at the price of promoting, however unintentionally, stereotypes and stigma around Alzheimer's 'victims.'"
"With the rapid industrialization of late 19th century America, what were once considered natural aspects of advanced age came to have pejorative meanings; the demands of the new marketplace stigmatized those who were not physically and mentally able to adequately participate in an increasingly complex and bureaucratized system. ... The disease's stigma arose from the sufferers' inability to 'carry off their role as respectable middle class persons' which entailed presenting a 'stable and coherent self to others.'"
"And no one every gets over being orphaned, not at any age. No one stops searching for home or for her mother."
"Too often our clinging to life, especially to fixed notions of what the body and the mind should be and do, eventuates in an all-out fight against vanishing, morphing into a perpetual state of war against the inevitability of change. This grasping seems to fuel a toxic self-importance, a childish denial of our limitations, and the vain pursuit of 'making our mark' without deep consideration to the nature of those marks."
June 20, 2024
Oh my. Not exactly sure what I just read. This book wasn’t what I expected, but after shifting my mindset and expectations, it was really good for the first half. It is a book of her thoughts and opinions on life, death, and existence through the lense of Alzheimer’s and dementia (I was expecting a more clinical approach detailing the disease).
The second half, I felt like the author did a full 180. Her words became very abstract, she talked about ponderings and contemplations she had about memory, being human, etc. It was almost like she was rambling about a spiritual experience she had. It was difficult to follow, but I understand what she was trying to encourage: not only accepting death but embracing it and almost looking forward to the “vanishing” that will come. She believes that instead of saying, “if I ever have dementia”, it would be best to say “when I have dementia”.
Towards the end, she was talking about a monk “making a stand” by lighting himself on fire, a moth on fire and watching its head burn “like a match” and thinking about the beautiful symbolism of it, talking about our “flesh”, the memories of her gut, her ascending beauty, etc. She told stories of women who killed themselves after being diagnosed with dementia, saying they didn’t want to be a “burden” to their family. Since she claims to be Christian, it was hard to understand why she would paint these women’s selfish suicide in (what seemed to me) a romanticized light.
I was frustrated with her progressive ideologies that had no connection to her topic and certainly no connection to Christianity. Basically, for the first half I felt like the book was a five star, and then it just went down from there and now it’s a three. I will say, I appreciated her chapter on Ralph Waldo Emerson, I found it beautiful the way that he approached his Alzheimer’s. I enjoyed her compassion and acceptance of people who suffer what may come with old age. So there were positives, but in the end I was just weirded out…and was wondering if she was OK.
The second half, I felt like the author did a full 180. Her words became very abstract, she talked about ponderings and contemplations she had about memory, being human, etc. It was almost like she was rambling about a spiritual experience she had. It was difficult to follow, but I understand what she was trying to encourage: not only accepting death but embracing it and almost looking forward to the “vanishing” that will come. She believes that instead of saying, “if I ever have dementia”, it would be best to say “when I have dementia”.
Towards the end, she was talking about a monk “making a stand” by lighting himself on fire, a moth on fire and watching its head burn “like a match” and thinking about the beautiful symbolism of it, talking about our “flesh”, the memories of her gut, her ascending beauty, etc. She told stories of women who killed themselves after being diagnosed with dementia, saying they didn’t want to be a “burden” to their family. Since she claims to be Christian, it was hard to understand why she would paint these women’s selfish suicide in (what seemed to me) a romanticized light.
I was frustrated with her progressive ideologies that had no connection to her topic and certainly no connection to Christianity. Basically, for the first half I felt like the book was a five star, and then it just went down from there and now it’s a three. I will say, I appreciated her chapter on Ralph Waldo Emerson, I found it beautiful the way that he approached his Alzheimer’s. I enjoyed her compassion and acceptance of people who suffer what may come with old age. So there were positives, but in the end I was just weirded out…and was wondering if she was OK.
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