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Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain
These compelling case histories meld science and storytelling to illuminate the complex relationship between the mind of someone with dementia and the mind of the person caring for them.
"This book will forever change the way we see people with dementia disorders-and the people who care for them."-Lori Gottlieb, author of Maybe You Should Talk to Someone
After getting a master's degree in clinical psychology, Dasha Kiper became the live-in caregiver for a Holocaust survivor with Alzheimer's disease. For a year, she endured the emotional strain of looking after a person whose condition disrupts the rules of time, order, and continuity. Inspired by her own experience and her work counseling caregivers in the subsequent decade, Kiper offers an entirely new way to understand the symbiotic relationship between patients and those tending to them. Her book is the first to examine how the workings of the "healthy" brain prevent us from adapting to and truly understanding the cognitively impaired one.
In these poignant but unsentimental stories of parents and children, husbands and wives, Kiper explores the existential dilemmas created by this disease: A man believes his wife is an impostor. A woman's imaginary friendships drive a wedge between herself and her devoted husband. Another woman's childhood trauma emerges to torment her son. A man's sudden Catholic piety provokes his wife.
Why is taking care of a family member with dementia so difficult? Why do caregivers succumb to behaviors-arguing, blaming, insisting, taking symptoms personally-they know are counterproductive? Exploring the healthybrain's intuitions and proclivities, Travelers to Unimaginable Lands reveals the neurological obstacles to caregiving, enumerating not only the terrible pressures the disease exerts on our closest relationships but offering solace and perspective as well.
"This book will forever change the way we see people with dementia disorders-and the people who care for them."-Lori Gottlieb, author of Maybe You Should Talk to Someone
After getting a master's degree in clinical psychology, Dasha Kiper became the live-in caregiver for a Holocaust survivor with Alzheimer's disease. For a year, she endured the emotional strain of looking after a person whose condition disrupts the rules of time, order, and continuity. Inspired by her own experience and her work counseling caregivers in the subsequent decade, Kiper offers an entirely new way to understand the symbiotic relationship between patients and those tending to them. Her book is the first to examine how the workings of the "healthy" brain prevent us from adapting to and truly understanding the cognitively impaired one.
In these poignant but unsentimental stories of parents and children, husbands and wives, Kiper explores the existential dilemmas created by this disease: A man believes his wife is an impostor. A woman's imaginary friendships drive a wedge between herself and her devoted husband. Another woman's childhood trauma emerges to torment her son. A man's sudden Catholic piety provokes his wife.
Why is taking care of a family member with dementia so difficult? Why do caregivers succumb to behaviors-arguing, blaming, insisting, taking symptoms personally-they know are counterproductive? Exploring the healthybrain's intuitions and proclivities, Travelers to Unimaginable Lands reveals the neurological obstacles to caregiving, enumerating not only the terrible pressures the disease exerts on our closest relationships but offering solace and perspective as well.
Editorial Reviews
"Kiper . . . evinces a capaciousness of sympathy and understanding for Alzheimer's patients and (especially) their caregivers that infuses her portrayals of their struggles with Sacksian humanity. For the frustrated caregiver, trapped in a vicious psychodynamic that is dehumanizing to both parties, this may provide some valuable solace."-The American Scholar
"An elegant, empathetic, immensely informative, and insightful primer for caregivers as they try to navigate the fragmented, skewed world of the cognitively impaired."-Psychology Today
"This book will forever change the way we see people with dementia disorders-and the people who care for them. Dasha Kiper compassionately illuminates the complex bond between us and our loved ones suffering from cognitive decline, surprising us with what we can learn about ourselves through this experience and the ways our own minds both deceive us and make us uniquely human."-Lori Gottlieb, author of Maybe You Should Talk To Someone
"How do we cope with those who have lost something as profound as the ‘normal' sense of self? Travelers to Unimaginable Lands is a compassionate and insightful book about dementia and its startling effects."-Roz Chast, author of Can't We Talk About Something More Pleasant?
"Stirring, persuasive, and memorable . . . an eloquent and gripping book about personalities and the dances between them, exposing what dementia reveals about both the patient and the caretaker."-David Eagleman, neuroscientist at Stanford, author of Livewired
"This book-richly endowed with experience and wisdom-is a treasure. It provides those who care for the neurologically impaired the comfort of empathic insight into their own problematic behavior. Like no other book, it examines how taking care of the impaired mind affects one's own mind and sets up an internal struggle that reveals something fundamental about the human brain. I predict a long life for Travelers to Unimaginable Lands for anyone interested in or intimately involved with those afflicted by dementia."-Vivian Gornick, author of Fierce Attachments
"Filled with insights and clinical jewels from start to finish, this book has much to teach us about th...
"An elegant, empathetic, immensely informative, and insightful primer for caregivers as they try to navigate the fragmented, skewed world of the cognitively impaired."-Psychology Today
"This book will forever change the way we see people with dementia disorders-and the people who care for them. Dasha Kiper compassionately illuminates the complex bond between us and our loved ones suffering from cognitive decline, surprising us with what we can learn about ourselves through this experience and the ways our own minds both deceive us and make us uniquely human."-Lori Gottlieb, author of Maybe You Should Talk To Someone
"How do we cope with those who have lost something as profound as the ‘normal' sense of self? Travelers to Unimaginable Lands is a compassionate and insightful book about dementia and its startling effects."-Roz Chast, author of Can't We Talk About Something More Pleasant?
"Stirring, persuasive, and memorable . . . an eloquent and gripping book about personalities and the dances between them, exposing what dementia reveals about both the patient and the caretaker."-David Eagleman, neuroscientist at Stanford, author of Livewired
"This book-richly endowed with experience and wisdom-is a treasure. It provides those who care for the neurologically impaired the comfort of empathic insight into their own problematic behavior. Like no other book, it examines how taking care of the impaired mind affects one's own mind and sets up an internal struggle that reveals something fundamental about the human brain. I predict a long life for Travelers to Unimaginable Lands for anyone interested in or intimately involved with those afflicted by dementia."-Vivian Gornick, author of Fierce Attachments
"Filled with insights and clinical jewels from start to finish, this book has much to teach us about th...
Short Excerpt Teaser
1
Borges in the Bronx
Why We Can't Remember That Alzheimer's Patients Forget
One day in 1887, a young man saddles his horse and goes out riding. Perhaps the horse is spooked or stumbles, and the young man is thrown hard to the ground. He loses consciousness, and when he recovers he learns that he is hopelessly crippled. He retires to his modest ranch in southwestern Uruguay, where he is visited one night by a writer of his acquaintance. The writer finds him lying on a cot, immersed in darkness, smoking a cigarette and reciting in a high-pitched voice the words of a Latin treatise. After an exchange of pleasantries, the young man, whose name is Ireneo Funes, brings up another outcome of his accident. It seems he now possesses an imperishable memory. Everything from an object's form to its shadow, every experience and how he feels about it, is filed away precisely as it occurs. He can recall not only "every leaf on every tree of every wood, but even every one of the times he had perceived or imagined it." He can learn any language in a matter of hours, reconstruct all of his dreams, and has in fact reconstructed an entire day, minute by tumultuous minute. "I have more memories in myself alone than all men have had since the world was a world," he tells the writer.
The two men talk through the night, and when the sun rises, the writer, for the first time, makes out Funes's face. He seems "more ancient than Egypt, older than the prophecies and the pyramids." And suddenly the writer realizes the cost of owning an implacable memory, a memory that never allows us to forget, a memory that calls into question the very purpose of remembering.
To get to Mr. Kessler's neighborhood in the Bronx from Columbia University, you take the 1 train to 231st Street and transfer to a bus. The trip takes about forty minutes, enough time for me to wonder, on my first ride uptown, whether I'd made a mistake. Had I really left graduate school to look after a ninety-eight-year-old man? I told myself I was a temporary fix, someone to help Mr. Kessler around the house until his son, Sam, found a more permanent solution. But as the weeks wore on and Mr. Kessler's equilibrium was jarred time and again by confusion and emotional outbursts, I became increasingly invested in his struggle. His swings from clear-headedness to bewilderment, sometimes within minutes, made me wonder why caregivers like Sam find profound memory loss so hard to acknowledge, much less accept.
Sam's relationship with his father had been fractious from the time he had announced, at twenty-one, that he was going to be a professional musician. He had picked up a saxophone at twelve and discovered he loved the sound it made. He prevailed upon his father to buy him one and taught himself to play by listening to records and hanging out with other young musicians. Mr. Kessler didn't mind Sam "making noise" in the house, but playing music was no way of making a living. Sam needed to get a job first and play music second. But Sam had no interest in working. His job, he told his father, was playing the tenor sax. "What kind of job is that?" Mr. Kessler had retorted. "You need to work in an office. Be an adult. Adults don't sleep in the day and stay up all night."
But Sam did stay up most nights. He joined various bands, playing in one nightspot after another, making just enough money to get by. When Sam tried to explain what jazz meant to him, Mr. Kessler would shake his head and mutter, "Words, words." What worried him was that Sam's life was unstructured, his career uncertain, and that he had never married.
A Holocaust survivor, Mr. Kessler was a curious mixture of certainty and vulnerability, of innocence and obstinacy. He behaved as if he knew everything, perhaps because everything he had once known had been so brutally snatched away. Perhaps, too, this is why many survivors became overinvested in their children. For them, having children was a kind of vindication, a form of resistance against the Nazis. Although this was never alluded to by Mr. Kessler, it might partly explain why he wanted more than anything else that Sam should lead what Mr. Kessler considered a normal life, a life that could not be upended as his had been.
It was this oppressive concern, as Sam one day confided, that made him attend college out of state and immerse himself so completely in his music. But he could not escape. Not fully. Mr. Kessler's conviction that Sam was wasting his life was relentless. But even as Sam felt burdened by his father's expectations, he also wanted his approval. And though he hated causing him more pain, he also resented being made to feel like a disappointment. But how could he make his father understand...
Borges in the Bronx
Why We Can't Remember That Alzheimer's Patients Forget
One day in 1887, a young man saddles his horse and goes out riding. Perhaps the horse is spooked or stumbles, and the young man is thrown hard to the ground. He loses consciousness, and when he recovers he learns that he is hopelessly crippled. He retires to his modest ranch in southwestern Uruguay, where he is visited one night by a writer of his acquaintance. The writer finds him lying on a cot, immersed in darkness, smoking a cigarette and reciting in a high-pitched voice the words of a Latin treatise. After an exchange of pleasantries, the young man, whose name is Ireneo Funes, brings up another outcome of his accident. It seems he now possesses an imperishable memory. Everything from an object's form to its shadow, every experience and how he feels about it, is filed away precisely as it occurs. He can recall not only "every leaf on every tree of every wood, but even every one of the times he had perceived or imagined it." He can learn any language in a matter of hours, reconstruct all of his dreams, and has in fact reconstructed an entire day, minute by tumultuous minute. "I have more memories in myself alone than all men have had since the world was a world," he tells the writer.
The two men talk through the night, and when the sun rises, the writer, for the first time, makes out Funes's face. He seems "more ancient than Egypt, older than the prophecies and the pyramids." And suddenly the writer realizes the cost of owning an implacable memory, a memory that never allows us to forget, a memory that calls into question the very purpose of remembering.
To get to Mr. Kessler's neighborhood in the Bronx from Columbia University, you take the 1 train to 231st Street and transfer to a bus. The trip takes about forty minutes, enough time for me to wonder, on my first ride uptown, whether I'd made a mistake. Had I really left graduate school to look after a ninety-eight-year-old man? I told myself I was a temporary fix, someone to help Mr. Kessler around the house until his son, Sam, found a more permanent solution. But as the weeks wore on and Mr. Kessler's equilibrium was jarred time and again by confusion and emotional outbursts, I became increasingly invested in his struggle. His swings from clear-headedness to bewilderment, sometimes within minutes, made me wonder why caregivers like Sam find profound memory loss so hard to acknowledge, much less accept.
Sam's relationship with his father had been fractious from the time he had announced, at twenty-one, that he was going to be a professional musician. He had picked up a saxophone at twelve and discovered he loved the sound it made. He prevailed upon his father to buy him one and taught himself to play by listening to records and hanging out with other young musicians. Mr. Kessler didn't mind Sam "making noise" in the house, but playing music was no way of making a living. Sam needed to get a job first and play music second. But Sam had no interest in working. His job, he told his father, was playing the tenor sax. "What kind of job is that?" Mr. Kessler had retorted. "You need to work in an office. Be an adult. Adults don't sleep in the day and stay up all night."
But Sam did stay up most nights. He joined various bands, playing in one nightspot after another, making just enough money to get by. When Sam tried to explain what jazz meant to him, Mr. Kessler would shake his head and mutter, "Words, words." What worried him was that Sam's life was unstructured, his career uncertain, and that he had never married.
A Holocaust survivor, Mr. Kessler was a curious mixture of certainty and vulnerability, of innocence and obstinacy. He behaved as if he knew everything, perhaps because everything he had once known had been so brutally snatched away. Perhaps, too, this is why many survivors became overinvested in their children. For them, having children was a kind of vindication, a form of resistance against the Nazis. Although this was never alluded to by Mr. Kessler, it might partly explain why he wanted more than anything else that Sam should lead what Mr. Kessler considered a normal life, a life that could not be upended as his had been.
It was this oppressive concern, as Sam one day confided, that made him attend college out of state and immerse himself so completely in his music. But he could not escape. Not fully. Mr. Kessler's conviction that Sam was wasting his life was relentless. But even as Sam felt burdened by his father's expectations, he also wanted his approval. And though he hated causing him more pain, he also resented being made to feel like a disappointment. But how could he make his father understand...
