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Memory's Last Breath: Field Notes on My Dementia
In the tradition of Brain on Fire and When Breath Becomes Air , Gerda Saunders' Memory's Last Breath is an unsparing, beautifully written memoir -- a true-life Still Alice that captures Saunders' experience as a fiercely intellectual person living with the knowledge that her brain is betraying her. Saunders' book is uncharted territory in the writing on dementia, a diagnosis one in nine Americans will receive.
Based on the ''field notes'' she keeps in her journal, Memory's Last Breath is Saunders' astonishing window into a life distorted by dementia. She writes about shopping trips cut short by unintentional shoplifting, car journeys derailed when she loses her bearings, and the embarrassment of forgetting what she has just said to a room of colleagues. Coping with the complications of losing short-term memory, Saunders nonetheless embarks on a personal investigation of the brain and its mysteries, examining science and literature, and immersing herself in vivid memories of her childhood in South Africa.
Written in a distinctive voice without a trace of self-pity, Memory's Last Breath is a remarkable, aphorism-free contribution to the literature of dementia -- and an eye-opening personal memoir that will grip all adventurous readers.
Based on the ''field notes'' she keeps in her journal, Memory's Last Breath is Saunders' astonishing window into a life distorted by dementia. She writes about shopping trips cut short by unintentional shoplifting, car journeys derailed when she loses her bearings, and the embarrassment of forgetting what she has just said to a room of colleagues. Coping with the complications of losing short-term memory, Saunders nonetheless embarks on a personal investigation of the brain and its mysteries, examining science and literature, and immersing herself in vivid memories of her childhood in South Africa.
Written in a distinctive voice without a trace of self-pity, Memory's Last Breath is a remarkable, aphorism-free contribution to the literature of dementia -- and an eye-opening personal memoir that will grip all adventurous readers.
1 pages, Audio CD
First published June 13, 2017
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About the author
Gerda Saunders
1 book13 followersGERDA SAUNDERS grew up in South Africa, where she obtained a B.S. in Math and Chemistry from the University of Pretoria. After working as a research scientist at the South African Atomic Energy Board for three years, she taught Science and Math at Kempton Park (Afrikaans) High school and Math and Physics at the Kempton Park Technical Institute. In 1984, she settled in Utah with her husband Peter and two children. While enrolled in an English PhD at the University of Utah in 1996, she taught Business- and Creative Writing. After graduation, she worked for seven years in the business world as a technical writer and program manager. In 2001, she became the Associate Director of Gender Studies at the University of Utah. In addition to her administrative role, she taught classes in gender studies and English Literature. In 2002, SMU Press published her stories Blessings on the Sheep Dog, about which Nobel laureate J.M. Coetzee said, “With cool intelligence, laconic wit, and deep feeling, Saunders explores the moral chaos of South Africa and the pain of a new generation of…exiles.” At the time of her sixty-first birthday, she received a diagnosis of microvascular disease, a precursor of dementia. Having retired shortly after her diagnosis, she now enjoys time with her family, including three grandchildren. Other interests are community work and writing. In Winter 2013, The Georgia Review published her essay about the effect of her brain’s unraveling on her identity, “Telling Who I Am Before I Forget: My Dementia.” The essay was reprinted in other publications, including in the online magazine Slate. From Saunders’s essay grew a memoir, Memory’s Last Breath: Field Notes on My Dementia, forthcoming from Hachette Books in spring/summer 2017.
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June 17, 2017
3.5 Stars
” And the longer life goes on, the fewer are those around to challenge our account, to remind us that our life is not our life, merely the story we have told about our life.”
--Julian Barnes, The Sense of an Ending
A now retired scientist, Gerda Saunders was 61 when she was diagnosed with early onset dementia, more specifically - micro-vascular disease. This memoir is her thoughts, fears, frustrations over the following years, the affect it had on her, her husband, her children, and daily life. From forgetting to include “necessary” garments to struggling with minor to more major concerns. When to give up driving. When to say “no more.”
As the author is a scientist, it shouldn’t come as too big of a surprise that this has a more clinical approach than other books I’ve read on this subject, the majority being fiction, but not all. I was hoping for a bit more of a personally involved perspective, but this has a bit more of a detached, clinical approach than what I was hoping for. She does talk about how everything affects her in a clinical sense, she just doesn’t talk about how that makes her feel, even her stepping into areas of frustration seem removed and aloof. I understand that as a person, but as a reader it kept me from feeling connected. This is the one thing that didn’t work as well for me. For me – that doesn’t mean it won’t work for you. This is really a very well balanced book in terms of showing you both the scientific aspect and the more human side of life, when that life is fraught with unpredictable lapses of memory, of understanding, of those moments of panic that set in when we feel trapped by something and can’t figure out way out.
Saunders memoir covers quite a bit of territory and includes a blend of research studies further clarified in terms of how it affects someone on a daily basis, along with the memories of her youth, growing up in South Africa, amazing stories including their move from South Africa to Utah. I loved reading about her quest to determine which telling of a story was the most accurate one, which sibling, or parent, neighbor, etc. remembered the accurate numbers and who did what. These areas are where this book really was lovely, a blend of real-life to focus on a real person instead of the academic nature of research. There is some discussion of her literature, Iris Murdoch, Shakespeare.
”Murdoch’s own relation to words, speech, writing, stands testament to her conviction that there is no self without language, no route to ‘ultimate divinity’ without the mediating power of words.”
There are heartbreaking moments in this, as clinical as these thoughts are at times, sometimes she lowers the protective field and lets the reader see those moments when she clings to these moments when life is still good. When a hug from a grandchild is enough to remember reasons why life still has its “good enough” moments.
Also included are her “Field Notes.” Among these are notes on the frustrations of the day.
”Dementia Field Notes, 7-26-2014: The other day I put my bra on over my pajama T-shirt.”
Through these you can sense a bit of the day-to-day struggle she lives with and how they range from a simple frustration to frightening ones.
The fears of becoming one of those physically alive but mentally no longer involved are examined, with inclusions of thoughts of others, authors, scientists, quotes from Song of Solomon to Jonathan Franzen. Research into the field of Physician Assisted Dying, much like I read about in Deborah Ziegler’s “Wild and Precious Life.”
David Shenk, author of “The Forgetting: Alzheimer’s: Portrait of an Epidemic” shares a thought “the unique curse of Alzheimer’s Disease (AD) is that it ravages several victims for every brain it infects.” This is a truth too often overlooked. It is usually avoided as a thought until it is unavoidable. No one wants to think of this happening to someone they love. No one wants to think of this happening to someone in their own family. It’s a life changing disease for everyone involved.
” And the longer life goes on, the fewer are those around to challenge our account, to remind us that our life is not our life, merely the story we have told about our life.”
--Julian Barnes, The Sense of an Ending
A now retired scientist, Gerda Saunders was 61 when she was diagnosed with early onset dementia, more specifically - micro-vascular disease. This memoir is her thoughts, fears, frustrations over the following years, the affect it had on her, her husband, her children, and daily life. From forgetting to include “necessary” garments to struggling with minor to more major concerns. When to give up driving. When to say “no more.”
As the author is a scientist, it shouldn’t come as too big of a surprise that this has a more clinical approach than other books I’ve read on this subject, the majority being fiction, but not all. I was hoping for a bit more of a personally involved perspective, but this has a bit more of a detached, clinical approach than what I was hoping for. She does talk about how everything affects her in a clinical sense, she just doesn’t talk about how that makes her feel, even her stepping into areas of frustration seem removed and aloof. I understand that as a person, but as a reader it kept me from feeling connected. This is the one thing that didn’t work as well for me. For me – that doesn’t mean it won’t work for you. This is really a very well balanced book in terms of showing you both the scientific aspect and the more human side of life, when that life is fraught with unpredictable lapses of memory, of understanding, of those moments of panic that set in when we feel trapped by something and can’t figure out way out.
Saunders memoir covers quite a bit of territory and includes a blend of research studies further clarified in terms of how it affects someone on a daily basis, along with the memories of her youth, growing up in South Africa, amazing stories including their move from South Africa to Utah. I loved reading about her quest to determine which telling of a story was the most accurate one, which sibling, or parent, neighbor, etc. remembered the accurate numbers and who did what. These areas are where this book really was lovely, a blend of real-life to focus on a real person instead of the academic nature of research. There is some discussion of her literature, Iris Murdoch, Shakespeare.
”Murdoch’s own relation to words, speech, writing, stands testament to her conviction that there is no self without language, no route to ‘ultimate divinity’ without the mediating power of words.”
There are heartbreaking moments in this, as clinical as these thoughts are at times, sometimes she lowers the protective field and lets the reader see those moments when she clings to these moments when life is still good. When a hug from a grandchild is enough to remember reasons why life still has its “good enough” moments.
Also included are her “Field Notes.” Among these are notes on the frustrations of the day.
”Dementia Field Notes, 7-26-2014: The other day I put my bra on over my pajama T-shirt.”
Through these you can sense a bit of the day-to-day struggle she lives with and how they range from a simple frustration to frightening ones.
The fears of becoming one of those physically alive but mentally no longer involved are examined, with inclusions of thoughts of others, authors, scientists, quotes from Song of Solomon to Jonathan Franzen. Research into the field of Physician Assisted Dying, much like I read about in Deborah Ziegler’s “Wild and Precious Life.”
David Shenk, author of “The Forgetting: Alzheimer’s: Portrait of an Epidemic” shares a thought “the unique curse of Alzheimer’s Disease (AD) is that it ravages several victims for every brain it infects.” This is a truth too often overlooked. It is usually avoided as a thought until it is unavoidable. No one wants to think of this happening to someone they love. No one wants to think of this happening to someone in their own family. It’s a life changing disease for everyone involved.
February 24, 2022
4★
“Our family’s experience in comparing individual memories is congruent to my finding that the brain refreshes the ‘truth’ every time you retell.”
The author remembers a spectacular event from her childhood when a very fat death adder was discovered and killed and a whole lot of babies burst out! Not something you’re likely to forget, eh? She told the story in a straightforward manner, and I wondered why.
Then she contacted her siblings and others who were either on the scene or who had been told about it – earwitnesses, she calls them. and guess what? No two stories were the same! They differed on who was there, who killed the snake and with what, and what they did with the bits and pieces of all the snakes.
The only agreement was that a snake full of live babies was destroyed.
“So, a memory is changed every time it is remembered. These findings upends the model of memory (still) held by most people, namely that memory ‘works like a video camera, accurately recording the events we see and hear so that we can review and inspect them later.’ It raises questions whose answers may have far-reaching consequences. Given our contrary new understanding of memory recall, what is the status of our legal system’s reliance on the veracity of eyewitness testimony?”
This is an unusual combination of the memoir of a busy woman and a current journal noting her mental challenges as she is slowly dementing, as she puts it.
Gerda Saunders grew up in South Africa as a privileged white person. Her father owned land and she was white. That was the privilege that she didn’t understand until many years later when she lived in the United States. Her family had little money, their mother made all their clothes and refashioned hand-me-downs, and they lived quite simply. Hardly the stuff of privilege as it’s generally defined.
But they had black workers and staff who lived in even more primitive circumstances at the mercy of the Apartheid laws. They couldn’t go anywhere without actual passes and couldn’t go out after curfews, etc. It was not unlike the Jews as they were gradually ghettoised in WW2.
But little Gerda didn’t notice – she was busy playing outside and studying. She realises now that she just grew up thinking this is how life is, and she wonders if she will gradually retreat to those memories of an idyllic childhood as her new memories fail to form.
A top student, she eventually met Peter, her husband, when both were at university, and a good deal of the book revolves around her intellectual and academic prowess. I kept being reminded of the lady who doth protest too much and the saying “the older I am, the better I used to be”. I have no doubt that she is/was that bright, but I didn’t need her to keep describing the complexities of what she and Peter were studying or how talented she was and he is. I get it already!
After settling in Utah and taking up a position as a professor (the title of which is mentioned numerous times), she was diagnosed with Alzheimers, possibly like her mother’s.
She discusses the mechanics of the various regions of the brain and how they interconnect (or not) and how they make us seem who we are in a way that’s easy to visualise. When she writes, she says, she’s got plenty of time to make notes, look things up, ask questions, correct herself.
But getting dressed in the morning, she’s not sure which piece of clothing goes with which and may forget to put on her underwear.
“I write, in other words, so I won’t die of Truth.”
Many of her concerns are the same as anyone of advanced years, but she had just turned 64. [Okay, advanced years to someone who’s 25, but not old for someone like me!] She and Peter, her husband, are very close and she has lots of support, but for someone who left her homeland for a foreign country, it’s even more challenging. I won’t start on the American medical insurance issues!
She’s researching as always, collecting information and theories about memories.
“One of Fermi’s questions has attained cult status among physics and chemistry aficionados—a cult to which I belong. The puzzle is known as ’the last breath of Caesar’: When you take a single breath, how many molecules of your gas intake would come from the dying breath of Julius Caesar?”
There is an answer, and she likes to think that every breath she takes now could contain a bit of the air from all of her beloved family members and friends. [It’s certainly a nicer thought than the details about how many people have drunk the water in London before you do.]
Memory’s Last Breath is an apt title, and I’m sure this will be widely enjoyed by anyone interested in or dealing with dementia of any sort. It's a bit disjointed, but hey - what do you expect?
Thanks to NetGalley and Hachette for the review copy from which I’ve quoted (so quotes may have changed).
P.S. There's more on her website. https://www.gerdasaunders.com/
“Our family’s experience in comparing individual memories is congruent to my finding that the brain refreshes the ‘truth’ every time you retell.”
The author remembers a spectacular event from her childhood when a very fat death adder was discovered and killed and a whole lot of babies burst out! Not something you’re likely to forget, eh? She told the story in a straightforward manner, and I wondered why.
Then she contacted her siblings and others who were either on the scene or who had been told about it – earwitnesses, she calls them. and guess what? No two stories were the same! They differed on who was there, who killed the snake and with what, and what they did with the bits and pieces of all the snakes.
The only agreement was that a snake full of live babies was destroyed.
“So, a memory is changed every time it is remembered. These findings upends the model of memory (still) held by most people, namely that memory ‘works like a video camera, accurately recording the events we see and hear so that we can review and inspect them later.’ It raises questions whose answers may have far-reaching consequences. Given our contrary new understanding of memory recall, what is the status of our legal system’s reliance on the veracity of eyewitness testimony?”
This is an unusual combination of the memoir of a busy woman and a current journal noting her mental challenges as she is slowly dementing, as she puts it.
Gerda Saunders grew up in South Africa as a privileged white person. Her father owned land and she was white. That was the privilege that she didn’t understand until many years later when she lived in the United States. Her family had little money, their mother made all their clothes and refashioned hand-me-downs, and they lived quite simply. Hardly the stuff of privilege as it’s generally defined.
But they had black workers and staff who lived in even more primitive circumstances at the mercy of the Apartheid laws. They couldn’t go anywhere without actual passes and couldn’t go out after curfews, etc. It was not unlike the Jews as they were gradually ghettoised in WW2.
But little Gerda didn’t notice – she was busy playing outside and studying. She realises now that she just grew up thinking this is how life is, and she wonders if she will gradually retreat to those memories of an idyllic childhood as her new memories fail to form.
A top student, she eventually met Peter, her husband, when both were at university, and a good deal of the book revolves around her intellectual and academic prowess. I kept being reminded of the lady who doth protest too much and the saying “the older I am, the better I used to be”. I have no doubt that she is/was that bright, but I didn’t need her to keep describing the complexities of what she and Peter were studying or how talented she was and he is. I get it already!
After settling in Utah and taking up a position as a professor (the title of which is mentioned numerous times), she was diagnosed with Alzheimers, possibly like her mother’s.
She discusses the mechanics of the various regions of the brain and how they interconnect (or not) and how they make us seem who we are in a way that’s easy to visualise. When she writes, she says, she’s got plenty of time to make notes, look things up, ask questions, correct herself.
But getting dressed in the morning, she’s not sure which piece of clothing goes with which and may forget to put on her underwear.
“I write, in other words, so I won’t die of Truth.”
Many of her concerns are the same as anyone of advanced years, but she had just turned 64. [Okay, advanced years to someone who’s 25, but not old for someone like me!] She and Peter, her husband, are very close and she has lots of support, but for someone who left her homeland for a foreign country, it’s even more challenging. I won’t start on the American medical insurance issues!
She’s researching as always, collecting information and theories about memories.
“One of Fermi’s questions has attained cult status among physics and chemistry aficionados—a cult to which I belong. The puzzle is known as ’the last breath of Caesar’: When you take a single breath, how many molecules of your gas intake would come from the dying breath of Julius Caesar?”
There is an answer, and she likes to think that every breath she takes now could contain a bit of the air from all of her beloved family members and friends. [It’s certainly a nicer thought than the details about how many people have drunk the water in London before you do.]
Memory’s Last Breath is an apt title, and I’m sure this will be widely enjoyed by anyone interested in or dealing with dementia of any sort. It's a bit disjointed, but hey - what do you expect?
Thanks to NetGalley and Hachette for the review copy from which I’ve quoted (so quotes may have changed).
P.S. There's more on her website. https://www.gerdasaunders.com/
February 26, 2018
I read this book because it was recommended to me by a friend as a book to do with Alzheimer's and I hope she will forgive me that I can't write a good review. I really disliked the author. I thought she was a dyed-in-the-wool pro=Apartheid racist who liked to think of herself as a liberal. It is, especially for a South African Boer who has emigrated to the US, politically correct to identify as non-racist. However, her writing gives her away. It is not enough to quote Maya Angelou or talk about a "beautiful woman of colour", you have to live it too. You don't have to be an activist, well you do actually, but in very small ways in your own life is fine, but it is a case of show don't tell.
Review to come.
Review to come.
July 27, 2017
3.5 stars
So, after reading this, I've got very mixed feelings about this book. Overall, it's an amazing journal of what it means when a 61 year old woman is diagnosed with a form of dementia. Of course, it hit home especially hard for me as we are basically the same age. And whom among us doesn't have those moments of forgetfulness that strike fear into our hearts? But to have them over and over and realize it's not just the odd occurrence. It's my major fear.
Saunders hits some nails on the head, especially when she raises philosophical concerns. How much is one’s identity tied up in our idea of ourselves as a rational human? Or how can we trust any memories when some have been found to be false? Or how is the self revealed through life?
Saunders includes enough science to help understand how memories are formed and maintained and how dementia works on the brain. I'm a bit of a science geek, so I really enjoyed this part of the book. Those of you not keen on reading biology notes, might not find this as enjoyable.
Her background as a professor helps her find that perfect blend of analysis and antidote. She uses Iris Murdoch’s dementia to augment her own story. She gives us all the details of her life leading up to her diagnosis. It's like she wants to show us how much she does remember. I will admit that I did not find these sections as interesting. I think because I was so keen to hear her thoughts on her life after Alzheimer’s, I resented the pages devoted to her prior life. She doesn't let herself get bogged down by emotions. But that's not to say this book is dry or detached. It's not. Some of the most interesting parts of the book to me were all the “work arounds” she devised to stay independent as long as possible. Taking pictures of her different outfit combinations or how she took notes for this book are examples.
I was amazed to see the quality of writing in this book. As she points out, the parts of the brain most used retain their abilities the longest. And obviously, as a professor, her writing skills were highly developed.
Those who enjoyed, if that's the right word, Still Alice will find this book a worthwhile read as well.
I would have rated this higher if it had been more about the after diagnosis, not the before.
My thanks to netgalley and Hachette Books for an advance copy of this book.
So, after reading this, I've got very mixed feelings about this book. Overall, it's an amazing journal of what it means when a 61 year old woman is diagnosed with a form of dementia. Of course, it hit home especially hard for me as we are basically the same age. And whom among us doesn't have those moments of forgetfulness that strike fear into our hearts? But to have them over and over and realize it's not just the odd occurrence. It's my major fear.
Saunders hits some nails on the head, especially when she raises philosophical concerns. How much is one’s identity tied up in our idea of ourselves as a rational human? Or how can we trust any memories when some have been found to be false? Or how is the self revealed through life?
Saunders includes enough science to help understand how memories are formed and maintained and how dementia works on the brain. I'm a bit of a science geek, so I really enjoyed this part of the book. Those of you not keen on reading biology notes, might not find this as enjoyable.
Her background as a professor helps her find that perfect blend of analysis and antidote. She uses Iris Murdoch’s dementia to augment her own story. She gives us all the details of her life leading up to her diagnosis. It's like she wants to show us how much she does remember. I will admit that I did not find these sections as interesting. I think because I was so keen to hear her thoughts on her life after Alzheimer’s, I resented the pages devoted to her prior life. She doesn't let herself get bogged down by emotions. But that's not to say this book is dry or detached. It's not. Some of the most interesting parts of the book to me were all the “work arounds” she devised to stay independent as long as possible. Taking pictures of her different outfit combinations or how she took notes for this book are examples.
I was amazed to see the quality of writing in this book. As she points out, the parts of the brain most used retain their abilities the longest. And obviously, as a professor, her writing skills were highly developed.
Those who enjoyed, if that's the right word, Still Alice will find this book a worthwhile read as well.
I would have rated this higher if it had been more about the after diagnosis, not the before.
My thanks to netgalley and Hachette Books for an advance copy of this book.
September 16, 2017
I received this book in a GoodReads giveaway and will be passing on to family members before donating to our public library. Beautiful, informative and touching memoir about a most heartbreaking and difficult subject - dementia. This one hits particularly close to home for me as my vibrant, action-oriented, driven 89 year old dad has suffered from dementia since 2007. I would categorize this book as a must-read for anyone who has been recently diagnosed with or has a loved one who suffers from any form of dementia.
September 4, 2017
Memory’s Last Breath is not exactly the book of field notes its subtitle suggests. Yes, it contains some qualitative written observations about Saunders’s decline in cognitive function as she goes about her daily life, and yes, these do assist the reader in understanding the lived phenomenon of the disease process. However, the author also includes a number of miniature essays on neuroscience topics, including brief bits about the discipline’s history, an overview of the lobes of the brain, some notes on how memory works (a more slippery, less reliable thing than many people know), trepanation (the ancients’ practice of drilling holes in the skull—some of them sizeable—apparently to relieve pressure and pain), and a number of other related brain-science matters. Saunders refers liberally to the work of Michael Gazziniga, a prominent neuroscientist and head of the SAGE Center for the Study of the Mind at UC Santa Barbara, so if you are familiar with his work or that of other popularizer of neuroscience findings, you won't find much new here. The author also makes frequent reference to John Bayley’s memoir(s) about his wife, philosopher and prolific novelist Iris Murdoch. Apparently, Murdoch’s last book, Jackson’s Dilemma, signalled her intellectual decline well before she was diagnosed with Alzheimer's Disease. Meticulous analysis revealed that the vocabulary in the last novel was less rich and varied.
The largest part of Saunders’s book consists of autobiographical material, which is presented in roughly chronological order. Beginning with her early life on her paternal Afrikaner grandparents’ farm in rural South Africa, Saunders also provides some details about her first year at boarding school, her time in Iowa as a high-school exchange student, a few tidbits about young men she briefly dated at university, and some information about how she met her husband, Peter, there. Early married life and parenthood are glossed over fairly quickly, but there are a few interesting anecdotes about the difficulties of life under Apartheid in South Africa. Saunders also includes a brief biographical sketch of her mother, an artistic social worker, Susanna Steenekamp, who, after a traumatic brain injury, developed dementia late in life.
Saunders says she writes memoir to flesh out her shrinking self with former selves and so that she “won't die of Truth”—by which I imagine she means the knowledge of the eventual erasure of her personal memory and identity. Strangely, the reader is provided with few details about relationships with siblings and school friends. As a result, I’m reluctant to call this writing “memoir” as there is minimal emotional resonance or “affect” to the material.
As a young woman, Saunders studied science at university. Though largely banal, some of the autobiographical details she provides underscore that her parents placed a high premium on intellectual endeavours and were proud of their eldest daughter’s academic accomplishments. A few years after Saunders, her husband, and young children left their troubled homeland for Utah in 1984, she embarked on a Ph.D. in English, ultimately landing a job as an administrator in the gender studies department at the local university. Memory’s Last Breath is laced with quotations from the likes of John Locke and snippets of poetry from Shakespeare, e.e. Cummings, and (perhaps not too surprisingly given her academic discipline) Adrienne Rich and Anne Sexton ( feminist cult figures), among others. I sometimes found these references and allusions rather forced--distracting and distancing--but it is understandable that an academic forced into early retirement by neurodegenerative disease would cling to some scholarly trappings to show that not everything has yet fallen away.
Saunders mentions in a footnote early in the book that several members of her family are on the high-functioning end of the autism spectrum. This explains the character of a rather tedious e-mail discussion between Saunders and her siblings that she includes in her book. It concerns what each of the grown children recalls about a memorable childhood encounter with a lethal puff adder and its 39 wriggling offspring. Each family member recalls different details: a slightly different “truth” about the experience. Maps are drawn, electronically forwarded, and dissected—all of this ultimately intended to prove how slippery memory can be. Memories, Saunders notes, are not formed and pristinely maintained; rather, they are formed and then rebuilt, often delicately transformed, every time they’re accessed. “Our family’s experience in comparing individual memories, “ she writes, “ is congruent to my finding that the brain refreshes the ‘truth’ every time you retell it.”
While the story of the puff adder illustrates an important point, some of the details Saunders includes in her field notes and biographical sections do not. A field note about laying out clothing and jewelry morphs into annoyingly long set of associations about a now-extinct subspecies of zebra. Sancho Panza, Eeyore, Einstein, Darwin, and a dice-throwing god also figure in the mix of associations. And don't get me started on Saunders’s wedding gown, which gets more play than the ceremony or the guests. Again, the “feel” of an important day in Saunders’s life is somehow lacking. It’s hard to know if the preoccupation with minutiae (that are of no great interest to the average reader) has always been part of Saunders’s (rather Asperger-y) personal cognitive style, if it is some odd manifestation of her incipient dementia, or if she includes the details because she is simply happy to still remember them. Whatever the case, I wish some of them had been edited out.
For me, one of the most interesting, new pieces of information about dementia gained from the book concerned some sufferers’ retention of higher-order abilities. In her research, the author discovers that “persons having spent a lifetime mastering particular knowledge structures and intellectual skills may retain access to this expertise even after becoming utterly dependent in daily activities.” Saunders marvels at her continued ability to write, for example, even as her abilities to negotiate aspects of day to day life (such as dressing, driving, and finding her way around a department store) decline.
I cannot say I was entirely engaged by Memory’s Last Breath. I was surprised at how tedious the autobiographical components often read, and more than once I considered abandoning the book. The field notes themselves, the observation and recording of the evidence of decline, and Saunders’s love for her husband, who will likely be burdened with her care, are the most affecting aspects of the book. The last section of Memory’s Last Breath is particularly notable for its description of Saunders’s and her husband’s clear-eyed and courageous preparation for her end-of-life care, which acknowledges the potential for euthanasia or doctor-assisted suicide.
The writing of any book is an accomplishment. That a vital woman afflicted with vascular dementia has been able to produce a readable, reasonably organized one that conveys something of the lived experience and heartbreak of identity-erasing condition is an achievement indeed.
The largest part of Saunders’s book consists of autobiographical material, which is presented in roughly chronological order. Beginning with her early life on her paternal Afrikaner grandparents’ farm in rural South Africa, Saunders also provides some details about her first year at boarding school, her time in Iowa as a high-school exchange student, a few tidbits about young men she briefly dated at university, and some information about how she met her husband, Peter, there. Early married life and parenthood are glossed over fairly quickly, but there are a few interesting anecdotes about the difficulties of life under Apartheid in South Africa. Saunders also includes a brief biographical sketch of her mother, an artistic social worker, Susanna Steenekamp, who, after a traumatic brain injury, developed dementia late in life.
Saunders says she writes memoir to flesh out her shrinking self with former selves and so that she “won't die of Truth”—by which I imagine she means the knowledge of the eventual erasure of her personal memory and identity. Strangely, the reader is provided with few details about relationships with siblings and school friends. As a result, I’m reluctant to call this writing “memoir” as there is minimal emotional resonance or “affect” to the material.
As a young woman, Saunders studied science at university. Though largely banal, some of the autobiographical details she provides underscore that her parents placed a high premium on intellectual endeavours and were proud of their eldest daughter’s academic accomplishments. A few years after Saunders, her husband, and young children left their troubled homeland for Utah in 1984, she embarked on a Ph.D. in English, ultimately landing a job as an administrator in the gender studies department at the local university. Memory’s Last Breath is laced with quotations from the likes of John Locke and snippets of poetry from Shakespeare, e.e. Cummings, and (perhaps not too surprisingly given her academic discipline) Adrienne Rich and Anne Sexton ( feminist cult figures), among others. I sometimes found these references and allusions rather forced--distracting and distancing--but it is understandable that an academic forced into early retirement by neurodegenerative disease would cling to some scholarly trappings to show that not everything has yet fallen away.
Saunders mentions in a footnote early in the book that several members of her family are on the high-functioning end of the autism spectrum. This explains the character of a rather tedious e-mail discussion between Saunders and her siblings that she includes in her book. It concerns what each of the grown children recalls about a memorable childhood encounter with a lethal puff adder and its 39 wriggling offspring. Each family member recalls different details: a slightly different “truth” about the experience. Maps are drawn, electronically forwarded, and dissected—all of this ultimately intended to prove how slippery memory can be. Memories, Saunders notes, are not formed and pristinely maintained; rather, they are formed and then rebuilt, often delicately transformed, every time they’re accessed. “Our family’s experience in comparing individual memories, “ she writes, “ is congruent to my finding that the brain refreshes the ‘truth’ every time you retell it.”
While the story of the puff adder illustrates an important point, some of the details Saunders includes in her field notes and biographical sections do not. A field note about laying out clothing and jewelry morphs into annoyingly long set of associations about a now-extinct subspecies of zebra. Sancho Panza, Eeyore, Einstein, Darwin, and a dice-throwing god also figure in the mix of associations. And don't get me started on Saunders’s wedding gown, which gets more play than the ceremony or the guests. Again, the “feel” of an important day in Saunders’s life is somehow lacking. It’s hard to know if the preoccupation with minutiae (that are of no great interest to the average reader) has always been part of Saunders’s (rather Asperger-y) personal cognitive style, if it is some odd manifestation of her incipient dementia, or if she includes the details because she is simply happy to still remember them. Whatever the case, I wish some of them had been edited out.
For me, one of the most interesting, new pieces of information about dementia gained from the book concerned some sufferers’ retention of higher-order abilities. In her research, the author discovers that “persons having spent a lifetime mastering particular knowledge structures and intellectual skills may retain access to this expertise even after becoming utterly dependent in daily activities.” Saunders marvels at her continued ability to write, for example, even as her abilities to negotiate aspects of day to day life (such as dressing, driving, and finding her way around a department store) decline.
I cannot say I was entirely engaged by Memory’s Last Breath. I was surprised at how tedious the autobiographical components often read, and more than once I considered abandoning the book. The field notes themselves, the observation and recording of the evidence of decline, and Saunders’s love for her husband, who will likely be burdened with her care, are the most affecting aspects of the book. The last section of Memory’s Last Breath is particularly notable for its description of Saunders’s and her husband’s clear-eyed and courageous preparation for her end-of-life care, which acknowledges the potential for euthanasia or doctor-assisted suicide.
The writing of any book is an accomplishment. That a vital woman afflicted with vascular dementia has been able to produce a readable, reasonably organized one that conveys something of the lived experience and heartbreak of identity-erasing condition is an achievement indeed.
June 21, 2017
Disappointing. I picked this up after hearing the author on NPR, so I expected to like it but threw in the towel about halfway through.
It is actually 13 essays about various aspects of her dementia, which is a wise choice of structure for someone with her problem. She talked of the difficulty of writing and how long it took her, so she might not have been able to craft a book-length work.
I was not getting nearly as much insight into her experiences with dementia or her progression as I expected, although there was some. And she discusses brain structure in a lucid well-organized way, better than most writers without dementia!
The worst failing, in my opinion, was the EXTENSIVE biographical material about her family and early life. I am guessing that these memories and the information about her family are precious to her, but they were not interesting enough for me to spend time on, and very little of it got tied into the subject of the book.
I very much admire that she was able to accomplish this work but not enough to read the whole thing.
It is actually 13 essays about various aspects of her dementia, which is a wise choice of structure for someone with her problem. She talked of the difficulty of writing and how long it took her, so she might not have been able to craft a book-length work.
I was not getting nearly as much insight into her experiences with dementia or her progression as I expected, although there was some. And she discusses brain structure in a lucid well-organized way, better than most writers without dementia!
The worst failing, in my opinion, was the EXTENSIVE biographical material about her family and early life. I am guessing that these memories and the information about her family are precious to her, but they were not interesting enough for me to spend time on, and very little of it got tied into the subject of the book.
I very much admire that she was able to accomplish this work but not enough to read the whole thing.
Read
May 9, 2017Gerda Saunders was a scientist, an intellectual, a wife, mother and writer when at age 61 she was diagnosed with early onset Alzheimers. For the next several years, she was able to document what was happening to her brain and how it affected her every day life. This erudite memoir is a combination of research explained and daily struggles noted. Saunders does not complain about the unfairness of it all. She goes about her business doing the best she can under the circumstances. Her husband and family do the same. No matter the diagnosis, we should all wring as much enjoyment from life as Gerda Saunders does. (to be published in June)
February 29, 2024
This is an interesting memoir of a woman who has a diagnosis of dementia, and her self awareness of losing herself. PBS in Utah did a 6 year long film of her struggle, which I am now watching. This is such a difficult struggle, for patients and their families!
January 31, 2018
The human tendency to find order in chaos causes us to fill in conspicuous gaps or loose ends so that everything fits into a story and...put into context. p 145
The self divides the minute we start looking for it. p224
In this amazing and moving study, GS attempts to fill in the ever widening gaps in her understanding by documenting her own creeping dementia. Presenting the latest theories on the subject, she intersperses scientific opinions with philosophical musings, social experiments, and her intimate field notes. She examines the role of memory as an unreliable indicator of the truth and an indispensable part of identity.
Every time we think about the past we are delicately transforming the cellular representation in the brain, changing its neural circuity. p31
We are not born with a self that merely has to unfold through the years to reveal our true nature, but our self is rather brought into being by the people we encounter on our life path. Our self is relational.....p224
Luckily, GL has a sense of humor and this and her extreme intelligence (along with her splendid and supportive family) has kept her so far still engaged and celebrating life. I can imagine her with a pen in her hand until the moment that the concept of writing disappears. At that point, she has decided, she would not be herself and so has planned a death with dignity. Until then, I am sure that her field notes will have much to teach the world.
The self divides the minute we start looking for it. p224
In this amazing and moving study, GS attempts to fill in the ever widening gaps in her understanding by documenting her own creeping dementia. Presenting the latest theories on the subject, she intersperses scientific opinions with philosophical musings, social experiments, and her intimate field notes. She examines the role of memory as an unreliable indicator of the truth and an indispensable part of identity.
Every time we think about the past we are delicately transforming the cellular representation in the brain, changing its neural circuity. p31
We are not born with a self that merely has to unfold through the years to reveal our true nature, but our self is rather brought into being by the people we encounter on our life path. Our self is relational.....p224
Luckily, GL has a sense of humor and this and her extreme intelligence (along with her splendid and supportive family) has kept her so far still engaged and celebrating life. I can imagine her with a pen in her hand until the moment that the concept of writing disappears. At that point, she has decided, she would not be herself and so has planned a death with dignity. Until then, I am sure that her field notes will have much to teach the world.
September 24, 2017
The author was diagnosed with microvascular dementia a few days before her 61st birthday.
I expected the book to be about her life after her diagnosis. Although there are many passages that document her life and thoughts after the diagnosis, the book also includes a lot of information about her past. There is also information about the brain, memory, and stories about others who suffered from dementia.
At first I did not understand the rationale for including long passages about her childhood. The connections between some stories were not clear.
Half-way through the book I planned to rate it 2 or 3 stars. Some of the historical passages bored me. The scientific information about the brain and memory was too detailed.
As I neared to end of the book I realized the book was the author's documentation of important memories, as her memory failed her. The seemingly random strings of memories, interspersed with more recent events and the scientific information, makes sense.
Overall, the book is a moving journey through the author's memories, including philosophical interpretations of what memory represents.
I expected the book to be about her life after her diagnosis. Although there are many passages that document her life and thoughts after the diagnosis, the book also includes a lot of information about her past. There is also information about the brain, memory, and stories about others who suffered from dementia.
At first I did not understand the rationale for including long passages about her childhood. The connections between some stories were not clear.
Half-way through the book I planned to rate it 2 or 3 stars. Some of the historical passages bored me. The scientific information about the brain and memory was too detailed.
As I neared to end of the book I realized the book was the author's documentation of important memories, as her memory failed her. The seemingly random strings of memories, interspersed with more recent events and the scientific information, makes sense.
Overall, the book is a moving journey through the author's memories, including philosophical interpretations of what memory represents.
August 14, 2018
Probably a fine memoir, but I felt too "outside-looking-in" with all her South Africa references and inside jokes and shocking lack of writing relating to her own dementia. I was hoping to glean more about an individual's experience with dementia and this book provides a simplistic overview of a lot of well-established neuroscience and little personal perspective beyond one's on pre-dementia life. Like I said, probably a fine book in it's own right, but not one that is necessarily about dementia.
February 3, 2018
An amazing and revealing look at both a life and the loss of mental faculties. Saunders combines tales from her past with notes from the journal she began taking after being diagnosed with dementia. She is exceptionally open, at times shockingly so.
Memory's Last Breath is a mixture of autobiography and a chronicle of her mental deterioration. The book is touching, heart-warming, sad, and informative.
Memory's Last Breath is a mixture of autobiography and a chronicle of her mental deterioration. The book is touching, heart-warming, sad, and informative.
November 4, 2017
I am so impressed that Gerda Saunders wrote this book about her dementia - it's an amazing achievement. I also think it's a really valuable book in understanding dementia and understanding how people with dementia feel and cope. If you know or work with people with dementia this is a really helpful read.
Aside from all that, as a reading experience, it didn't quite come together for me - the writing is fine, but isn't beautiful, the structure is also ok, but sometimes disjointed. There were parts where I was really enjoying it and then other parts where I completely lost interest.
So I think it depends on where you're coming from with this one - if you're just after an interesting memoir there may not be enough here, but if you are wanting to understand how dementia feels, then it could be for you.
Aside from all that, as a reading experience, it didn't quite come together for me - the writing is fine, but isn't beautiful, the structure is also ok, but sometimes disjointed. There were parts where I was really enjoying it and then other parts where I completely lost interest.
So I think it depends on where you're coming from with this one - if you're just after an interesting memoir there may not be enough here, but if you are wanting to understand how dementia feels, then it could be for you.
October 25, 2025
Memories Last Breath is a beautifully written and deeply personal book. The author’s honesty and vulnerability are moving, and her descriptions of memory loss and identity are both poetic and heartbreaking. Her writing style is elegant and engaging, and it’s clear she put her whole heart into this story.
That said, I found myself wishing the book had taken a different turn near the end. It felt as though the author tried to “play God,” seeking control over what can’t ultimately be controlled, instead of finding peace through faith. I would have loved to see her develop a relationship with Jesus and find meaning in the suffering — recognizing that even our pain and limitations can teach us and reveal the value of life itself.
Overall, it’s a powerful and thought-provoking memoir, but it left me longing for a sense of spiritual surrender and hope that never fully came.
That said, I found myself wishing the book had taken a different turn near the end. It felt as though the author tried to “play God,” seeking control over what can’t ultimately be controlled, instead of finding peace through faith. I would have loved to see her develop a relationship with Jesus and find meaning in the suffering — recognizing that even our pain and limitations can teach us and reveal the value of life itself.
Overall, it’s a powerful and thought-provoking memoir, but it left me longing for a sense of spiritual surrender and hope that never fully came.
dnf
May 8, 2021I feel like this would be a fascinating book if it's your cup of tea. I didn't realize going in how academically it was written, but it makes sense that the professor is an academic. I struggled following her a bit and found it a bit too dull, since I listen to audiobooks on mostly night shifts and was falling asleep while listening. I probably would have been able to follow along easier had I picked up the physical book. But I have nothing negative to say about this one apart from that it wasn't for me. If you're a bit more academically inclined, I'd highly recommend checking this out.
August 29, 2017
sort of feel a bit middle of the road bout this one. love ((and will be taking with me in my dealings at the library and more importantly w my mother..)) being let in to how someone feels in the pre slippings of dementia and how big a loss it is for them. it's important to hold that in dealings which can be equally sad frustrating and draining for the people around them. appreciated even more so the discussions on the brain, its anatomy, how it reflects the experience of dementia. an eating away of even while the person is within the disease witnessing now & then what it's doing to them. these are the moments of lucidity I see in my mom....
even w/ all this loveliness I still felt a bit overextended in these pages. most interested in the initial chapters, the field notes, and little bits here & there. was not overly enthralled by recountings of her childhood and the like ((perhaps me being a selfish reader)). uncomfortable with her narration & not dealing // politely sidestepping race & racism in the book. that she grows up white in South Africa and makes such casual references to black servants or separated living seems very avoidant. but of course, this is the reason she leaves the country. for fear of ((repulsion)) of the self inextricably wrapped up in nation state of apartheid South Africa. it almost makes me wonder.... how forgettings & erasings kept into "political discourse" factor in to discussions isolated to "medical discourse" when it comes to dementia... there is genetic, then there is temperament, then there is environment, and then the overlaid political??? thinking of Frantz Fanon here. just a theory.... a cross cultural analysis of dementia?>????? any leads?
even w/ all this loveliness I still felt a bit overextended in these pages. most interested in the initial chapters, the field notes, and little bits here & there. was not overly enthralled by recountings of her childhood and the like ((perhaps me being a selfish reader)). uncomfortable with her narration & not dealing // politely sidestepping race & racism in the book. that she grows up white in South Africa and makes such casual references to black servants or separated living seems very avoidant. but of course, this is the reason she leaves the country. for fear of ((repulsion)) of the self inextricably wrapped up in nation state of apartheid South Africa. it almost makes me wonder.... how forgettings & erasings kept into "political discourse" factor in to discussions isolated to "medical discourse" when it comes to dementia... there is genetic, then there is temperament, then there is environment, and then the overlaid political??? thinking of Frantz Fanon here. just a theory.... a cross cultural analysis of dementia?>????? any leads?
July 4, 2017
This has been my favorite read so far this summer. A poignant look, through the first person eye of the writer, at dementia. As a geriatric nurse for 30 years, I have seen it come to many, many people. Slowly it attacks the mind. Until eventually, the person that houses the mind, is just a shell. The mind is gone.
Where does the mind wonder to in these individuals? How much of the world around them are they aware of?
These are all things the author contemplates. And she expounds on the way to becoming the lost mind.
At times (perhaps too many) I found myself in tears. At others, rooting the writer on as she decides to fight the disease process and not simply give in.
Well written. Well informed;. And truly a must read.
I give this book five stars,
and a big thumbs up!
I highly recommend this book. You can find it on Amazon $18.36 for hardcover, $29.77 for Audio CD, and $13.99 for the ebook.
Where does the mind wonder to in these individuals? How much of the world around them are they aware of?
These are all things the author contemplates. And she expounds on the way to becoming the lost mind.
At times (perhaps too many) I found myself in tears. At others, rooting the writer on as she decides to fight the disease process and not simply give in.
Well written. Well informed;. And truly a must read.
I give this book five stars,
and a big thumbs up!
I highly recommend this book. You can find it on Amazon $18.36 for hardcover, $29.77 for Audio CD, and $13.99 for the ebook.
July 15, 2017
Gerda is a professor diagnosed with Alzheimer's disease and this is basically a collection of essays about her life. Some are beautiful and her thoughts on what is to come are heartbreaking and profound. Some are boring.
July 9, 2017
Heartbreaking on so many levels, personal and otherwise. But still, her strength and vivacity comes through on every page.
October 18, 2019
Gerda Saunders reflects on her life before and in the early years after her dementia diagnosis in her early sixties. She is surprisingly stoic as she talks about her shrinking sense of self, the idea of slowly becoming one of the “living dead,” her plans for an assisted suicide, and her feelings on why this option should be more accessible to people in her situation.
I was impressed by her willingness to confront the reality of her condition as she and her family made some critical decisions about when and how she would like help ending her life. I’m sure it will still be difficult for all of them when the time comes but at least her family will have the comfort of knowing her wishes while her mind is/was relatively intact.
I was impressed by her willingness to confront the reality of her condition as she and her family made some critical decisions about when and how she would like help ending her life. I’m sure it will still be difficult for all of them when the time comes but at least her family will have the comfort of knowing her wishes while her mind is/was relatively intact.
October 28, 2022
Read for Popsugar: A book you know nothing about
My friend delivered this book to me slipcover removed, wrapped in newspaper, so I'd have no inkling of what was inside. The title surprisingly didn't have me thinking of memory loss (I couldn't see the subtitle), but that is what the book is about. Gerda Saunders, upon receiving diagnosis of impending dementia, decided to document the process. This book includes excerpts from her field notes and a lot of autobiographical material detailing her youth in South Africa and her family history. These personal details are interspersed with scientific explanations and information from studies, etc. It's a fascinating topic, through hard to think about the eventual demise of my brain and with it, my "self." The last chapter on death with dignity is especially poignant, and got me thinking about my own plans for the future, should I find myself in a similar situation.
My friend delivered this book to me slipcover removed, wrapped in newspaper, so I'd have no inkling of what was inside. The title surprisingly didn't have me thinking of memory loss (I couldn't see the subtitle), but that is what the book is about. Gerda Saunders, upon receiving diagnosis of impending dementia, decided to document the process. This book includes excerpts from her field notes and a lot of autobiographical material detailing her youth in South Africa and her family history. These personal details are interspersed with scientific explanations and information from studies, etc. It's a fascinating topic, through hard to think about the eventual demise of my brain and with it, my "self." The last chapter on death with dignity is especially poignant, and got me thinking about my own plans for the future, should I find myself in a similar situation.
May 21, 2025
An educated , academic woman is diagnosed with early onset dementia and sets about journaling about it. This book weaves together reminiscence of childhood and family members in South Africa during apartheid, meeting her husband ,having children, moving to the States, and finding enjoyable engrossing work.
Not the most compelling book on dementia I've read ( Still Alice ranks as the best yet) , I do appreciate Gerda's unflinching look at worsening symptoms, the meaning of personhood, the nature of marriage when one is a caretaker , and how to manage the end of both mental and bodily life.
Not the most compelling book on dementia I've read ( Still Alice ranks as the best yet) , I do appreciate Gerda's unflinching look at worsening symptoms, the meaning of personhood, the nature of marriage when one is a caretaker , and how to manage the end of both mental and bodily life.
January 19, 2019
After the author gets a diagnosis of early on-set dementia, she decides to keep a journal about the changes she experiences in her life because of this. In this book she writes about these changes, discusses the brain & its mysteries and various end-of-life issues.
I was interested in reading this book because, first, I am 78 and secondly, though most of my family members have had long-lived lives without any but normal older age mental issues, what if I do? I wanted first-hand information on how one copes with deteriating mental issues.
I was interested in reading this book because, first, I am 78 and secondly, though most of my family members have had long-lived lives without any but normal older age mental issues, what if I do? I wanted first-hand information on how one copes with deteriating mental issues.
June 12, 2019
I recently finished this memoir of somebody who is losing her self to dementia. It is an amazing “insider“ account. If you know people going through dementia, this book may provide understanding and solace.
January 25, 2024
Had a really hard time following along through her childhood memories and sprinkled in random topics, such as facts about sharks, zombies, and bizarre inside jokes between family members. Unfortunately this took away from the dementia entries that were informative and insightful.
September 28, 2018
In this memoir, Saunders delves deep into her experiences with dementia and the effect its progression has on her loved ones, on her memory, on her daily activities, and on her sense of self. Combining personal recollections from her life (and examples of how she's attempted to resolve her own uncertainty about the veracity of these memories),"field notes" about her daily experiences with the symptoms of dementia, and detailed information about the brain anatomy and physiology as they relate to learning and memory, Saunders brings us along on her journey.
For the most part, it's a journey I enjoyed traveling with her, and not just because I enjoy reading about Salt Lake City, a place I love and once, for a short time, called home. There were a couple of sections that I found tedious, like the email back-and-forth with her siblings, but that might have been the result of the format of that particular section not translating well into audio. Similarly, I learned during the acknowledgements that there are photos and illustrations throughout the book that I missed listening to the audiobook. I'll have to pick up the hardcopy and see what I'm missing.
For the most part, it's a journey I enjoyed traveling with her, and not just because I enjoy reading about Salt Lake City, a place I love and once, for a short time, called home. There were a couple of sections that I found tedious, like the email back-and-forth with her siblings, but that might have been the result of the format of that particular section not translating well into audio. Similarly, I learned during the acknowledgements that there are photos and illustrations throughout the book that I missed listening to the audiobook. I'll have to pick up the hardcopy and see what I'm missing.
September 27, 2017
Memory's Last Breath
(Gerda Saunders) 2017
Could one call a book which deals with a ten-year-long demise of brain function into 90% dementia, a roller coaster ride? For me, it was!
Gerda Saunders' ability to showcase her own intellect and her understanding of the medical problem she has, is mind-boggling. Her report of losing not only her memory, but also her ability to live her daily life, is heart-rendering.
Yet her writing style is nearly clinical: Mere facts are presented. Mere examples of daily dilemmas. Mere comments from the people around her.
Mere adaptations required from her and her family. Mere decisions about the value of life when it becomes a burden and not a pleasure. Not a whine or a whimper from Gerda!
The reader becomes intimately acquainted with the young Gerda when growing up in the South African Steenekamp clan. Then comes Gerda's absorption into the Saunders clan and the adaptation required to be a USA immigrant. Seperately from the dementia issue which Saunders unravels in her book, each one of the above mentioned facets of her book, makes fascinating reading.
From the beginning of her book, Saunders juxtaposes the heaviness of exploring and dealing with dementia, with humane mostly happy stories from her life.
Her research into the brain and dementia leaves the reader in awe. Especially when one takes into account the fact that this is not merely an academic exercise, but a lived inside-out experience: Gerda herself is 'dementing' (p.9, 13).
I am a South African. Gerda's childhood stories touch many nerves (in fact, her sister Lana was in the same standard/grade as I was, and in the same school, yet a distant acquaintance). Gerda's atheism saddens me as she has intimate knowledge of the Bible, yet no personal relationship with Christ. Gerda's ego loss is worrying (p.67), as her whole life was built on her superior mental ability, yet it's her brain that's leaving her in the lurch.
Gerda Saunders has shown immense strength to share her story for the benefit of others. Her intellectual prowess has enabled her to leave a legacy for her family. May these qualities mutate into a kindness and compassion towards herself (she mentions such a possibility on p.96) so that her frustration at her new limitations disappear 'soos mis voor die son' [like mist in the sun]! Easy for me to preach, difficult for Gerda to practise!
Seënwense, Gerda!
(Gerda Saunders) 2017
Could one call a book which deals with a ten-year-long demise of brain function into 90% dementia, a roller coaster ride? For me, it was!
Gerda Saunders' ability to showcase her own intellect and her understanding of the medical problem she has, is mind-boggling. Her report of losing not only her memory, but also her ability to live her daily life, is heart-rendering.
Yet her writing style is nearly clinical: Mere facts are presented. Mere examples of daily dilemmas. Mere comments from the people around her.
Mere adaptations required from her and her family. Mere decisions about the value of life when it becomes a burden and not a pleasure. Not a whine or a whimper from Gerda!
The reader becomes intimately acquainted with the young Gerda when growing up in the South African Steenekamp clan. Then comes Gerda's absorption into the Saunders clan and the adaptation required to be a USA immigrant. Seperately from the dementia issue which Saunders unravels in her book, each one of the above mentioned facets of her book, makes fascinating reading.
From the beginning of her book, Saunders juxtaposes the heaviness of exploring and dealing with dementia, with humane mostly happy stories from her life.
Her research into the brain and dementia leaves the reader in awe. Especially when one takes into account the fact that this is not merely an academic exercise, but a lived inside-out experience: Gerda herself is 'dementing' (p.9, 13).
I am a South African. Gerda's childhood stories touch many nerves (in fact, her sister Lana was in the same standard/grade as I was, and in the same school, yet a distant acquaintance). Gerda's atheism saddens me as she has intimate knowledge of the Bible, yet no personal relationship with Christ. Gerda's ego loss is worrying (p.67), as her whole life was built on her superior mental ability, yet it's her brain that's leaving her in the lurch.
Gerda Saunders has shown immense strength to share her story for the benefit of others. Her intellectual prowess has enabled her to leave a legacy for her family. May these qualities mutate into a kindness and compassion towards herself (she mentions such a possibility on p.96) so that her frustration at her new limitations disappear 'soos mis voor die son' [like mist in the sun]! Easy for me to preach, difficult for Gerda to practise!
Seënwense, Gerda!
October 11, 2017
This was a hard book to read because of the topic. I can't imagine writing a book about dementia, much less writing a book about me having dementia and how it has affected me and my family. I don't know how much Gerda Saunders' editors had to rewrite this book, but just the fact that she was able to research and write a book with a diagnosis of dementia amazed me.
There were several things that I made notes on from this book. The first was the part about how some African societies divide humans into three categories: those still alive on this earth; those still remembered (after they die) by those still alive on this earth; and those who are dead (not forgotten, but not known by those alive still). I thought that was a beautiful way of looking at our ancestors. The second was the section about the research that Saunders did about suicide as a way to not be a burden on her family. Physician assisted suicide is not an option in the US because dementia patients aren't in their right minds and can't make that decision. I learned about VSED, which is "voluntary stopping of eating or drinking" as a legal alternative. I'm not sure how I feel about suicide in these cases, but I've seen the patients at my MIL's care facility, and some of them do not have a quality of life that I would want and so I totally understand Saunders's decision to commit suicide before she loses that quality of life. (Her check list was assisted by Atul Gawande's work on end of life issues. His book, "Being Mortal", is a great place to start if you want to learn more about dying on your own terms.) I also got some more resources to learn more about dementia and Alzheimer's.
I hope that this book causes me to pause whenever I'm feeling frustrated with my MIL. She can't help it and would definitely not chose this way of life.
There were several things that I made notes on from this book. The first was the part about how some African societies divide humans into three categories: those still alive on this earth; those still remembered (after they die) by those still alive on this earth; and those who are dead (not forgotten, but not known by those alive still). I thought that was a beautiful way of looking at our ancestors. The second was the section about the research that Saunders did about suicide as a way to not be a burden on her family. Physician assisted suicide is not an option in the US because dementia patients aren't in their right minds and can't make that decision. I learned about VSED, which is "voluntary stopping of eating or drinking" as a legal alternative. I'm not sure how I feel about suicide in these cases, but I've seen the patients at my MIL's care facility, and some of them do not have a quality of life that I would want and so I totally understand Saunders's decision to commit suicide before she loses that quality of life. (Her check list was assisted by Atul Gawande's work on end of life issues. His book, "Being Mortal", is a great place to start if you want to learn more about dying on your own terms.) I also got some more resources to learn more about dementia and Alzheimer's.
I hope that this book causes me to pause whenever I'm feeling frustrated with my MIL. She can't help it and would definitely not chose this way of life.
August 23, 2017
I expected a lot more from this book. At times, it is very insightful about the experience of mild to moderate dementia, and living with the clear prospect of severe dementia. The author is also compelling in her stories of her childhood in South Africa, her relationship with her husband, and with her mother, who also became demented. However, the author's family stories are often uninteresting to anyone outside the family. At the very end, she gives a list of questions she would like her children to consider in deciding whether her life is of acceptable quality and if not, if it is time to start Voluntary Stopping of Eating and Drinking (VSED). Here are several examples:
1. Do I wake up most days feeling joyful and excited about my new day, no matter the level of intellectual activity I am capable of?
2. Do I appear and act happy for more hours per day than I appear and act unhappy?
3. Do I complain frequently about loneliness, depression, or boredom?
4. Does it take my combine caretakers more hours per day to care for me than the hours when I am not consuming care?
5. Are my caretakers' children or job or quality of life suffering as a result of their care for me?
6. Do I still provide (and enjoy) the comfort of a warm body?
But Saunders gives no advice on how to balance the answers. What if she complains frequently about loneliness, etc. but still provides and enjoys the comfort of a warm body? What if she wakes up most days feeling joyful, but her caretakers' children, job, and quality of life are suffering as a result of their care for her? How can they decide if it's time for her to die if they don't know how to weight each answer, and what the total should be?
1. Do I wake up most days feeling joyful and excited about my new day, no matter the level of intellectual activity I am capable of?
2. Do I appear and act happy for more hours per day than I appear and act unhappy?
3. Do I complain frequently about loneliness, depression, or boredom?
4. Does it take my combine caretakers more hours per day to care for me than the hours when I am not consuming care?
5. Are my caretakers' children or job or quality of life suffering as a result of their care for me?
6. Do I still provide (and enjoy) the comfort of a warm body?
But Saunders gives no advice on how to balance the answers. What if she complains frequently about loneliness, etc. but still provides and enjoys the comfort of a warm body? What if she wakes up most days feeling joyful, but her caretakers' children, job, and quality of life are suffering as a result of their care for her? How can they decide if it's time for her to die if they don't know how to weight each answer, and what the total should be?
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