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Based on the “field notes” she keeps in her journal, Memory’s Last Breath is Gerda 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, a former university professor, 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. “For anyone facing dementia, [Saunders’] words are truly enlightening . . . Inspiring lessons about living and thriving with dementia.” — Maria Shriver, NBC’s Today Show
When I was diagnosed with early-onset dementia just before my sixty-first birthday in 2010, I kept my hurt, anger, fear, and doubts under wraps. I had no choice. I had a job, a husband, children, grandchildren, friends. I had a life. However, there is nothing like a death sentence—in my case, the premature death of my mind—to provoke questions about life. What, actually, is memory, personality, identity? What is a self? Will I still be (have?) a self when my reason is gone? For me, the place to work out such questions has always been in writing. From that place of self-reckoning, then, came this book.
In July 2011—nine months after my diagnosis—when I retired from my position as the associate director of the Gender Studies Program at the University of Utah, my colleagues gave me a beautiful leather-bound journal as a goodbye present. I took to jotting down notes in it about my daily misadventures—pots on the stove boiling dry, washing my hair twice in an hour, forgetting to bake a casserole I had prepared the night before. With a wink at my background in the sciences, I called my journal Dementia Field Notes: I would be an anthropologist, assigned to observe one member of a strange tribe, the Dementers. Like a true scientist, I would be objective. No whining, wailing, or gnashing of teeth. Just the facts.
A month or two into my "objective" writing, I also started to write a personal narrative about my dementia. Objectivity be damned. I felt compelled to tell my story from the inside. Months later, the piece turned into an essay. After some tough-love editing by two of my closest friends—Shen Christenson and Kirstin Scott, both writers—I showed the essay to my husband, Peter, my children Marissa and Newton and their spouses, and a few close friends. They urged me to share the essay with others and, to my delight, demanded I write more.
I wrote a second essay, which included summaries of neurological research into various forms of dementia. The idea that my writing might add up to a book slowly started to take shape. Two and a half years after my first Field Notes entry, I had completed three essays. I was mentally exhausted. I had little energy left to enjoy my life. My working memory—the ability to hold a small amount of info in my head while using it, such as remembering the street name and street number as I wrote down an address while someone said it on the phone—barely functioned. Neuropsychological tests showed a decline in my IQ. I began to question if writing a book was worth these losses. Was this how I wanted to spend my remaining "good years"?
I decided to end my excursion into writing with a bang. Starting in September 2012, I mined my completed essays for passages that would add up to a stand-alone piece for publication. The result was published as "Telling Who I Am before I Forget: My Dementia" in the Winter 2013 issue of the Georgia Review (GR) and subsequently reprinted in the large-circulation online magazine Slate. That a Slate editor would even notice my essay in an academic journal—though it consistently ranks first or near the top of its peers on Pushcart's list of nonfiction journals—had been a matter of great serendipity. But Dan Kois is not just any editor—having started out at Slate as culture editor, he made a habit of reading academic journals for reprint possibilities. While Kois cruised the publishers' displays at the 2014 conference of the Association of Writers and Writing Programs, the editor managing GR's booth handed him a copy of the Winter 2013 issue and mentioned my essay, in Dan's words, "as one they were particularly enthusiastic about." (Blessings on the Georgia Review's extraordinary staff!)
To my surprise, the Slate essay was reviewed or recommended in publications ranging from an NYU School of Medicine newsletter to Business Insider to the New Yorker. While this recognition stroked my ego, the comments, questions, and contacts I received from readers expanded my heart, particularly those from people who had dementia in their families. My family had been right in thinking that my writing on dementia could be useful in the world—that perhaps, in exploring my own experience on the page, I could in some way help shed light on the confusion, embarrassments, hurt feelings, and shrinking self-image that many people with dementia experience. Inevitably, my Calvinist upbringing kicked in: It was my duty to continue the book. And then, out of the blue, an email arrived one day from the sine qua non Kate Garrick, a literary agent in New York. Under her watchful eye, I wrote more essays. In time, Kate helped me see that they almost added up to an autobiography. But not quite. Large chunks of my life were missing. During the next two years, Kate nursed me through additions and revisions, a process during which I sometimes got so lost in the manuscript that I almost gave up. My reward for going on was that, in the end, my manuscript provided a glimpse into the full arc of my life. In February 2016, Kate sold my manuscript to Hachette Books, where my editor, the thoughtful perfectionist Paul Whitlatch, helped me shape the somewhat flabby manuscript into the book you now hold in your hands.
My book is for this: to add my personal story to the body of science about dementia already accumulated by the lifetime efforts of neuroscientists, neuropsychologists, other medical researchers, and healthcare providers.
My book is for you: whether you or someone you love has dementia, or you're a medical professional, or a person searching for your own self after a huge life change, or someone just plain curious, who—like me—feels that the more you know, the better you're able to love.
Telling Who I Am before I Forget
ON SEPTEMBER 21, 2010, five days before my sixty-first birthday, I was given a diagnosis of microvascular disease. Following Alzheimer's, microvascular disease is the second leading cause of dementia. I was—as my rather blunt neurologist put it—already "dementing." Insofar as I had thought about dementia before that day, I was unaware that the word had a verb form: I dement, you dement, he/she/it dements, they dement, we all dement. Now, six years later, "the cloake sitteth no lesse fit" on my chastened back.
The denial with which I initially met my diagnosis will seem disingenuous in light of the fact that I knew the symptoms of dementia even then—and recognized them in myself. Also, my mother had a form of mental disconnect that made her increasingly out of touch with reality until her death at eighty-two. Given that, why did my doctor's utterance fall so disconsonantly on my ear? It took me a long time to understand how profoundly the diagnosis threatened my sense of identity.
My pursuit of a PhD in English in my forties introduced me to the Enlightenment philosophers. I remember being intrigued by John Locke's and William Whewell's quest for, as Locke puts it, the "originals from whence all our ideas take their beginnings," which took both men back to Adam's expulsion from the Garden of Eden. Locke describes fallen Adam as lost in a "strange Country" with "all Things new, and unknown about him"; Whewell pictures Adam doing the first work of postlapsarian orientation by giving names "distinct and appropriate to the facts" to newly encountered objects and concepts.
I knew something about this project. Having emigrated in 1984 from South Africa to Salt Lake City with my husband, Peter, and our two children, I had experienced the discombobulation of having to decipher situations that must appear mundane to residents equipped with the requisite cultural vocabulary. What, for example, are you supposed to do when an acquaintance drops by your house with her own beverage in tow? How do two people proceed from acquaintance to friendship without that most crucial foundation of South African hospitality: a fresh pot of tea? Why is letting your kids run naked through the sprinklers in your own backyard or displaying baby pictures of your kids naked regarded by visitors as tantamount to sexual exploitation? What about the forlorn feeling when hosts with whom you have had a marvelous evening say goodbye to you at the door rather than walking you to your car?
By my mid-fifties, I had cracked these and other social codes to a great extent. I knew that having coffee meant heading to the nearest Starbucks. I had built up a scaffolding of friends so dear they had become family. Most of the time I no longer felt like a foreigner. I had developed an American self and was settling into it. But before I had even reached my sixties, I had begun again to feel like an alien of sorts, a stranger even to myself.
I first noted an irksome absentmindedness in my work as the associate director of gender studies at the University of Utah, a position I took at age fifty-two after a foray into the corporate world. Like the troublesome serpent in Genesis, an impairment in my working memory—the ability to maintain and manipulate information "live" in a multistep process, such as remembering to carry the tens when you add numbers—slunk into my intellectual Eden.
My love of teaching was the reason I left my corporate job in 2002 for academics, gladly taking a 25 percent salary cut. After fewer than five years in my dream job, forebodings that not all was well started to cloud my class time: I would lose the thread of a discussion or forget the point toward which I had intended to steer the students' thinking. Often, the name of a novel or author I used to know as well as my children's names would not come to mind. Not infrequently, a student would remind me during the last moments of class that I had failed to distribute notes or an assignment.
I began to prepare scripts for my lessons, but even these did not prevent me from losing my place in my own mnemonic system. Though I had not yet sought a diagnosis, I took our program director into my confidence about my memory difficulties and she graciously supported me in negotiating smaller teaching loads. Soon there was only one class per year. During my last two years of working at the university I was not teaching at all and was instead bogged down in management and meetings, just like in my corporate days.
On the administrative front, too, my fraying memory caused me stress. During the first gathering of a Women's Week committee that I chaired, I had created a detailed agenda to keep me on track: welcome, make introductions, review themes covered in past years, brainstorm ideas for this year, and so forth. At some point between the welcome and the review of previous themes, my mind flipped into confusion. Someone was talking. His voice was distant, and syllables flowed from his mouth without coalescing into meaning. I panicked. I had no idea where we were in the agenda. Desperately scanning my notes, my eye fell on "Introductions." When the speaker paused, I suggested we introduce ourselves. As the words left my mouth, I remembered with horror that we had already gone around the table. My insides cramped at the realization that I had committed the cardinal sin of academia: not thinking accurately on my feet. A colleague from the Women's Resource Center tried to take the edge off my embarrassment by saying that we all had so many things on our plates it was no wonder we sometimes got confused. The nodding heads around the table conveyed empathy, but also confirmed that everyone had noted my loss of face.
And so my downward slide continued. I knew I had to retire.
Dementia Field Notes
During my going-away meeting with Gender Studies, the faculty gave me this journal. In it I'll report my descent into the post-cerebral realm for which I am headed. No whimpering, no whining, no despair. Just the facts.
Saturday at the mall I performed the physical motions of shoplifting—walked out of Macy's with a pair of pants over my arm. I only noticed when I was inside Dillard's on the opposite side of the mall. I hurried back, ready to explain. There were no salespeople around, and no one noticed when I put them back.
Took Bob and Diane to do their grocery shopping. (Been taking them since their son Bobbie took away Bob's keys after his stroke last year.) When we were done, I could not find my keys. The car doors were unlocked, the keys in the ignition. Returning home, I forgot to stop at Bob and Diane's and pulled into my driveway instead. Last time I took the old people shopping I did not notice the traffic light changing until Bea reminded me to go. She is eighty-six.
At home, too, my various slips proliferated. I spoke to my family and closest friends. "Senior moments," my peers knowingly declared. Even my then-twentysomething children, Marissa and Newton, assured me they, too, experienced similar lapses. As the incidents accumulated, though, my immediate family acknowledged that they noticed a change. As I approached my sixtieth birthday, they agreed that my deficits might be adding up to a diagnosable disease. I started considering making a doctor's appointment, my mother's mental unraveling never far from my mind.
On a February day in 1996, my mother, Susanna Catharina Steenekamp, was found wandering in her retirement center in Pretoria, South Africa, severely disoriented. A nurse led her from her stand-alone home to the sick bay, from where my sister booked her into the Little Company of Mary Hospital. When I arrived in her hospital room days later, she did not seem aware that I had come halfway across the globe. She did recognize me, however—my utterly proper mother introduced me to her nurse as "my daughter who writes fuck," an apparent reference to the language in my short story collection. Susanna also announced her every bodily function, saw angels, and poured water over herself "to bring down [her] temperature." With family, her loving disposition still came through, but with the black nurses her post-apartheid liberalism evaporated. She acted superior, entitled, rude.
Despite my mother's altered behavior, only my brother Boshoff, himself a doctor, mentioned dementia. In keeping with South African medical practice at the time of my mother's illness—proceedings that remain essentially unchanged as I write fifteen years later—my siblings and I concurred with our mother's doctors that there was no need to push for an official diagnosis despite the existence of tests. From this deliberately low-tech perspective, Susanna was undergoing some form of mental diminishment characteristic of old age, in which her behavior would determine the extent of assistance she would need. And that is how her second childhood played out without a name.
As my mother attained a somewhat stable state after her breakdown, it was apparent that she would indeed need a high level of care. My sister Lana put our mother's house up for sale, disposed of her furniture, and found her a private room in an "old-age home" that provided the twenty-four-hour care she needed. Surprising us all, my mother came out of her deranged state within a year after her dramatic collapse. When she "came to," my mother resolutely refused to stay in a place that afforded her no freedom or privacy. Lana reinstalled her in her house in the previous retirement center, which fortunately had not yet been sold.
Back in her own home, however, Susanna frequently fell, often injuring herself. She had trouble cooking—my sister Tertia once discovered her eating meat that was still raw. Her nurses suspected she was having a series of small strokes. After some months, it became clear that her functionality had declined to a point where she was incapable of living by herself, even with the help of a house cleaner/companion twice a week, the watchful eye of the center's staff, and the option to have three meals a day at the communal dining room. Despite my mother's insistence that she was fine, our family, led by Lana, moved her to an old-age home with levels of care ranging from semi-independence to lockup. Susanna became reconciled to the move when she found out that she would still be able to visit neighbors and the library on her own.
Eight years after her initial collapse and facing rising costs, we moved my then eighty-year-old mother to a more rural and cheaper, yet excellent, care center in Cape Town under Tertia's care. She would spend her last two years in the landscape where she went to university and fell in love with my father, a fact she remembered even while forgetting her children's names.
My mother's deterioration had gone without a name. What, then, to do about my own unhinging? Even though much had been learned about dementia in the decade after my mother's death, all but the most occult sources concurred that there is ultimately no cure for dementia, or any other brain disorder with symptoms adding up to the gradual loss of intellectual function thereby "depriv[ing] sufferers from be[ing] able to think well enough to do normal activities, such as getting dressed or eating," "the ability to solve problems or control their emotions," as well as the adroitness to distinguish between things that are real and "things that are not there."
Despite the lack of anything approaching a "cure," there are medications thought to slow the progression of Alzheimer's and other dementias. However, my preliminary research confirmed what Peter and I had learned anecdotally: no existing medications could stave off the inevitable decline that catches up with even the most diligently monitored patient. We were afraid that the quest for diagnosis could trap us in what writer and physician Atul Gawande once described as "the unstoppable momentum of medical treatment." Still, we are both the kind of people who want to know, always drawn like moths toward enlightenment. Also, confirmation of our suspicions might help us prepare. If the unnamable loomed ahead, we could plan for expensive care, diminished quality of life, and a way to end my life at the right time.
I asked Peter to come along for that initial doctor's appointment in 2010. Our primary care doctor politely entertained our doubts about the value of diagnosis. She heard out our pontifications about what we regarded as a worthwhile quality of life, and let us stew our own way into following her suggestion that I have an MRI. The scan results showed "white matter lesions"—an indication of clogged microvessels that prevent blood from reaching nearby brain areas. Dr. Eborn confirmed the internet wisdom that microvascular dementia might benefit from cholesterol-and blood pressure–lowering medications to retard the clogging. However, a neurologist would first have to confirm a connection between my memory problems and the lesions.
One neurologist, one neuropsychologist, dozens of tests, and many hundreds of out-of-pocket dollars later, my neurologist uttered the d-word. She projected that two more neurological evaluations at two-year intervals would be needed before I would officially meet the criteria of dementia.
But in my heart I already knew: I am dementing. I am dementing. I am dementing.
Reflection on Dementia Field Notes of 8-11-2011 and 8-15-2011
Twice in August 2011, I jotted down notes in my journal about moments—possibly minutes—when I felt stark, staring mad. In the first entry, I tell about trying to rest in the afternoon and I keep on seeing columns of black and red Arial type scrolling on my eyelids.
A few days later, my entry was about sitting on my half of our two-seater La-Z-Boy reading The Botany of Desire. Soon after getting started, while paging over, I punched a hole in the page I had grabbed with the thumb and forefinger of my left hand. A few pages later, I apparently took up the page too roughly again, this time tearing out a corner piece.
Remembering the scrolling, I immediately thought that it was related to the book-ripping.
At the end of the week, however, while preparing our medications for the next week, Peter discovered that we had both forgotten to take our tablets the day before the scrolling. I knew that a sudden withdrawal of the drugs I take to counter my short-term-memory-loss-induced anxiety causes hallucinogenic effects. Thank goodness that turned out to be the cause—I thought I was getting even crazier.
It feels good to blame the lack of medication for the visual weirdness. However, I certainly have not forgotten my medication often enough to account for the fifteen months of weirdness I have so far recorded in my journal. While I do feel a bit crazy when I discover myself doing something unusual or illogical, I do not feel "mad" most of the time. Am I crazy like a fox? Or, maybe, Lewis Carroll's Cat?
Alice [asked the Cat]: "And how do you know that you're mad?"
"To begin with," said the Cat, "a dog's not mad. You grant that?"
"I suppose so," said Alice.
"Well, then," the Cat went on, "you see, a dog growls when it's angry, and wags its tail when it's pleased. Now I growl when I'm pleased, and wag my tail when I'm angry. Therefore I'm mad."
"I call it purring, not growling," said Alice.
"Call it what you like."
Or, maybe, like Frida Kahlo, I have resolved to turn "madness" into a desirable state? A curtain behind which "I could do whatever I liked"? Kahlo: I'd arrange flowers, all day long, I'd paint; pain, love and tenderness, I would laugh as much as I feel like at the stupidity of others, and they would all say: "Poor thing, she's crazy!"
Or, maybe, in this Don Quixote is my sage: When life itself seems lunatic, who knows where madness lies? Perhaps to be too practical is madness. To surrender dreams—this may be madness. Too much sanity may be madness—and maddest of all: to see life as it is, and not as it should be!
Whoever I decide to take as a role model for the lunacy that awaits me, I have already, like Charles Baudelaire, "felt the wind on the wing of madness."
Years before my mental disorientations had become a daily bother, in the days before Gender Studies when I was still employed in corporate America, I took a business trip to Raleigh, North Carolina, where Jacques,* a former computer designer colleague of Peter's from South Africa, then lived.
In South Africa, Peter and the man had sometimes gone to lunch or for a drink after work, but I had only met him and his wife—let's call them the Du Preez family—at company-sponsored social occasions. After both families emigrated to the United States, Peter and Jacques kept in touch, occasionally swapping stories of their experiences trying to settle into their respective states, and we learned more about his wife and family than we had known in our South African past.
After I landed in Raleigh, the Du Preezes duly picked me up at the hotel and took me to their home, where other South Africans would join us for dinner. After a nostalgia-triggering braaivleis, or barbecue, a friend of the Du Preezes', who had come to the braaivleis with a male partner, told us how he discovered he was gay. Let's call him Fanus.
Fanus grew up in the 1950s in a large, tough-love Afrikaner family that adhered to South Africa's most conservative social and political thinking. As far as he could remember, Fanus had always wanted to be a good person and adhered to the conservative norms of his family, church, and school. After high school he joined the army, where he first encountered the terms homo and queer and the many colorfully pejorative variations that proliferate in Afrikaans as well as in English, which served as the lingua franca of a country with eleven official languages. Since these terms came into Fanus's vocabulary sealed in a centuries-thick layer of negative associations, he had no doubt that moffies, skeefs, gayins, poofters, pinks, fruits, dahlias, homos, queers, and those labeled with words he could not even bring himself to say were godless, unnatural people and the total opposite of the goodness he had pursued all his life. Accordingly, he joined his army buddies in taunting and terrorizing those unlucky few whose behavior or actions had marked them for torment in their heterosexual fellow soldiers' eyes.
After honorably completing his military service, Fanus started working in a business environment that was not quite as socially conservative as his hometown or the army. He made many friends, including a woman—say her name was Elsa—with whom he became very close. They spent a lot of time together. He started thinking about a future with her, a thought that made him extremely happy. She was the kind of woman his parents would love. She would be a good mother. He was young, however, and poor, and did not mention his dreams to her.
One day after work Fanus and Elsa were having a drink together, as they frequently did. Caught up in the warmth and comfort of their friendship, Fanus let slip the words "our future."
Elsa drew back, startled. After a few moments of trying to regain her composure, she leaned closer, took his hand in hers, and, in the gentlest, most caring voice, said, "Fanus, you and I have no future together. You are a homo."
When Fanus was telling this part of the story at the Du Preezes' party, his cup rattled in its saucer and he put it down on a side table. "When Elsa said that," he continued, "the lights of the world went out. An unspeakably foul, gray mist stretched all around me. My life had no shape, it was barren."
Everyone at the barbecue became totally quiet. Fanus went on. "After a long, long time," he said, "the lights of the world came back on. Color seeped back into my life. Objects fell into their contours like figures developing on a Polaroid. I felt bloated with relief, a helium balloon." As joy spread from his mouth to his eyes, he riffed on his own metaphor. "A homo balloon. I was a homo. I am a homo."
- "The book is remarkable not only for its fiercely honest, sometimes-poetic portrayal of mental decline, but also for the way the author effectively celebrates 'the magisteria of a mind'.... A courageous, richly textured, and unsparing memoir."—Kirkus Reviews (starred review)
- "[A] deeply emotional and humbling memoir...a work of breathtaking defiance."—Booklist (starred review)
- "This courageous and singular book describes both the indignities inscribed in the erosion of memory and the surprising grace to be found in that experience. At once observer and subject, Gerda Saunders demonstrates how a powerful intellect can remain undiminished even as other mental capacities are compromised. Her book's lessons in dignity will be invaluable to anyone facing the complex meanings of dementia."—Andrew Solomon, National Book Award-winning author of The Noonday Demon and Far from the Tree
- "The abrupt loss of everyday memory due to brain injury is swiftly and seriously unsettling. Its slower, subtle decline, the hallmark of dementia, provides time for introspection on its troubling trajectory. Gerda Saunders has given us a window into that chilling, yet poignant, psychological reality. Memory's Last Breath is personal, lucid, and inspiring."—Dr. Michael Gazzaniga, Director of the SAGE Center for the Study of Mind at the University of California, Santa Barbara, and author of Tales from Both Sides of the Brain: A Life in Neuroscience
- "Navigating the onset of her own dementia with intelligence and charm, Gerda Saunders has written an engaging mélange of reflection, family history and quest. Memory's Last Breath is a surprising and subtly triumphant contribution to the literature of recollection."—Honor Moore, author of The Bishop's Daughter
"Gerda Saunders' Memory's Last Breath is not only a how-to manual for navigating the emotional and physiological terrain of dementia--an illness that effects the daily lives and hopes of millions--but a highly compelling account of the life of the mind, its developments, repetitions, omissions, and flourishes. Through eloquent, unwavering prose, Saunders guides us through the horrors and humors of an illness that is slowly erasing her mental and physical memory; her insights are lessons in longevity. Above all things, Memory's Last Breath is indelible--a testament to the capacity of language both in a writer's life and a reader's."
—Ann Neumann, author of The Good Death
- "Saunders...writes bravely about her early-onset dementia diagnosis, and nicely bridges the intensely personal experience of her failing mind with examinations of neurological science.... Her evocative writing shows her to be a researcher and craftswoman."—Publishers Weekly
- "The book (with its astonishing subtitle: 'Field Notes on My Dementia') is a literary achievement ... blend[ing] meditations on memory and identity with brain science, rooted by the writer's anthropologic jottings of daily misadventures."—Salt Lake Tribune
- "An intimate, revealing account of living with dementia.... Saunders approaches some of the most difficult questions a human being can face with clarity and wisdom."—Shelf Awareness
- "Melodious.... The last chapter is stunning in both senses of the word, gorgeous and shocking... A graceful, innovative writer.... Saunders's awareness of her own mortality has turned her into an omniscient eye."—Jennifer Senior, New York Times
- "Memory's Last Breath: Field Notes on Dementia is a testament to perseverance, a weaving together of past and present experiences and an exploration of a changing identity. Memory's Last Breath shows that there can be life, joy and accomplishments after a dementia diagnosis."—Alzheimers.net
- "Extraordinary ... an unflinching self-portrayal by a woman losing the key markers of her identity."—Winnipeg Free Press
- "[A] fascinating look at the diminishing lifestyle of a person with Dementia.... Gerda Saunders has given us a window into her inspiring and courageous journey of life."—Portland Book Review
- "[Saunders] writes with clear-eyed honesty and, yes, humor about living with early-onset microvascular disease... Brilliantly illuminates the gulf between memories richly preserved and memory lost."—Melissa Block, NPR
- On Sale
- May 29, 2018
- Page Count
- 288 pages
- Hachette Books