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Summary
Summary
These "moving and often surprising" ( The Wall Street Journal ) case histories meld science and storytelling to show that caregivers don't just witness cognitive decline in their loved ones with dementia--they are its invisible victims.
"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
A BBC BOOK OF THE WEEK * A TELEGRAPH BEST BOOK OF SUMMER
Inspired by Dasha Kiper's experience as a caregiver and counselor and informed by a breadth of cognitive and neurological research, Travelers to Unimaginable Lands dispels the myth of the perfect caregiver. In these compassionate, nonjudgmental stories of parents and children, husbands and wives, contending with dementia disorders, Kiper explores the existential dilemmas created by this disease: a man believes his wife is an impostor; a woman's imaginary friendships with famous authors drive a wedge between her and her devoted husband; another woman's childhood trauma emerges to torment her son; a man's sudden, intense Catholic piety provokes his wife.
Kiper explains why the caregivers are maddened by these behaviors, mirroring their patients' irrationality, even though they've been told it's the disease at work. By demystifying the neurological obstacles to caregiving, Kiper illuminates the terrible pressure dementia disorders exert on our closest relationships, offering caregivers the perspective they need to be gentler with themselves.
Author Notes
Dasha Kiper is the former consulting clinical director of support groups at an Alzheimer's organization and has an MA in clinical psychology from Columbia University. She has worked with both dementia patients and caregivers.
Reviews (3)
Publisher's Weekly Review
In this thoughtful debut, Kiper, a clinical supervisor at an Alzheimer's caregiving organization, digs into the tortuous effects of dementia for sufferers and caregivers alike When Kiper decided to spend a year as a live-in caregiver for a 98-year-old man with dementia, she'd expected his behavior to be mercurial. What she didn't count on were her reactions, including anger and sometimes buying in to his delusions. Drawing on neurological research and her experience counseling caregivers, Kiper zeros in on the dilemmas that arise when patient and caregiver "unknowingly collaborate in misinterpreting" dementia. Caregivers, for instance, often feel patients are capable of self-awareness even though they know otherwise. Elsewhere, Kiper explains that caregivers often don't detect dementia in loved ones even when it's "staring them in the face," as it conflicts with their "internal model of reality." This becomes especially tricky when the condition's emotional symptoms (anger, confusion) are mistaken for a normal part of a difficult relationship. The author's clear reasoning skillfully illuminates psychological concepts, and her poignant experiences bring them to life, sensitively broaching issues of free will, identity, and loss. Those dealing with dementia will find solace in this compassionate investigation of the human mind. (Mar.)
Guardian Review
An elegant woman enjoys a gin and tonic and dinner with her husband in a cosy Italian restaurant near their Greenwich Village apartment; their relaxed, lighthearted conversation, long familiar to them, doesn't miss a beat. But as the time to leave this regular date draws near, he bids her farewell and she, in practised response, surreptitiously changes her dressy shoes to trainers so that she can rush home to arrive before he does. Once there, their dinner will be entirely forgotten to him and, in a painful reversal of their previous intimacy, he will ask her to leave - in the past he has evicted her to spend the night in the hallway or even called the police. He will not believe that they are married, and will react to evidence to the contrary - their shared belongings, anecdotes of their life together - as though it were planted or invented, a rotten fraud being perpetrated on him. In Travellers to Unimaginable Lands, Dasha Kiper, a clinical psychologist who works with caregivers to people suffering from dementia, is primarily focused on Elizabeth, the wife; what this form of apparent rejection means to her, and how she is able - or not - to negotiate it. There is no story in this book that is not equally heartbreaking: whether it is quotidian, as in the mother who repeatedly removes items from the freezer despite her daughter's dogged attempts to stop her with entreaties or taped-up instructions; or whether it is comparatively elaborate, as in the elderly woman who befriends the dead authors in photographs on the books she loves, going so far as to invite Stefan Zweig for dinner and ignoring her husband as she attempts, with no outward sign of success, to make conversation with him. It is striking, though unsurprising, how many of these incidents revolve around the rituals of food, or other daily activities, such as shaving or showering. In the drama of delusion, home is the theatre, the meal table a frequent stage set, and the domestic scene comes freighted with memories and associations. Kiper works only with family members caring for those with Alzheimer's or other types of dementia, rather than healthcare professionals, and is therefore highly attuned to the way that individual histories affect responses to this new, radically altered reality. Writing about "dementia blindness" - how long it takes relatives to recognise or acknowledge the new reality - she notes that "invariably, a caregiver's most susceptible blind spot is an old familial wound". Thus we learn how the freezer that has become a battleground is an echo of a mother's previous attempts to control her daughter's diet, and her daughter's subsequent eating disorder. Those taped-up notes, Kiper observes, are a frequent sight in the dementia household, an attempt at order that is rarely effective. Kiper marshalls her scientific evidence with extreme care to make the case that the "healthy" brain will inevitably founder when confronted with a mind that is fracturing. We default to making sense of what we see, to building relationships on the basis of a shared reality, to believing in an essential self that, even when threatened by disease and deterioration, persists. When, for example, a patient appears to understand perfectly well what is happening around them, or when they exhibit behaviour strongly suggestive of the personality we know, we are geared to fill in the gaps, to keep the show on the road; when that fails, we might become frightened, filled with grief and rejection, bewildered. Travellers to Unimaginable Lands is a work of exceptional compassion. Kiper attempts to show caregivers that their reactions - of anger, frustration, disbelief, isolation, immense sadness - are not merely understandable but a function of their own brain's operations. It is also a deeply imaginative response to that "unimaginable" territory which must, somehow, be navigated. Anyone on that journey will surely find this book immeasurably valuable.
Kirkus Review
A clinical psychologist offers a thoughtful, philosophical view of dementia. More than 55 million people around the world have dementia disorder, writes Kiper, a number that is expected to grow threefold by 2050 with an aging population--and that will incur costs in excess of $2.5 trillion. The numbers are meaningful, though they tell only a sliver of the story. In her clinical training, writes the author, she and her colleagues worked through "the dispassionate lens of quantitative analysis," with the clinician serving as a detached, impersonal observer and dispenser of dogma. Kiper's work as a caretaker, however, had given her a more sensitive view. One of her patients, a Holocaust survivor, "wanted it both ways: to be completely independent and yet receive constant attention." The phenomenon is common, and the symptoms that accompany declining mental function are sources of frustration, familial tension, and profound unhappiness. Yet, because at least in the early stages the patient appears to be more or less normal, whatever that is, "we're puzzled when dementia patients do not seem particularly diminished," so that the caretaker or family member is tempted simply to try to change the person's behavior so that they don't, say, misplace the car keys. Both the brains of the afflicted and the brains of the healthy are engaged in a kind of mutual incomprehension. As the husband of a woman with Alzheimer's wisely said, "People talk about my wife like she has a problem. But it's me. I'm the one with the problem." We all have problems, Kiper suggests, if only because we try to avoid the anxiety of disorientation and dislike unpredictability, the hallmarks of dementia. The author suggests that therapy should include ordinary conversation, by which "we create and acknowledge the possibility that clarity, meaning, and connection exist even when there appears to be only strangeness and futility." A humane approach to the silent epidemic of cognitive decline. Copyright (c) Kirkus Reviews, used with permission.
Excerpts
Excerpts
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 this? One believed in rules, the other questioned them; one took refuge in platitudes and convention, the other felt stifled by them. As a result, Mr. Kessler could show love and concern only by urging caution and finding fault, while Sam could protect himself only by pushing against his father's limited worldview. Given the body of literature devoted to caregiving, it's surprising how little attention is paid to the uncanny way that dementia often continues or exacerbates a long-standing dynamic. Indeed, one of the cruelest aspects of the disease--one that dementia guidebooks are loath to mention--is that its symptoms often recapitulate a laundry list of mutually aggravating behaviors. Although such books duly warn caregivers to expect stubbornness, clinginess, defensiveness, suspicion, incessant anxiety, irrationality, argumentativeness, and blatant denials of reality, they view these behaviors only as symptoms of dementia disorders rather than familiar irritants. They are symptoms, of course, but they may also represent problems that have always plagued a familial relationship. For Sam, the behaviors that had nettled him when his father was sixty irritated him no less now that his father was almost a hundred. His worst offense, in Sam's eyes, was potentially the most harmful: Mr. Kessler's newfound habit of fiddling with the electric fixtures and lamps. At least once a week, I overheard a version of the following: Sam: Stop trying to fix the lamp in your room. It's dangerous. Mr. Kessler: I don't touch the lamp. I don't know what you want from me. Sam: You mess around with the lamp and the wiring. That's how you cut your hand. Mr. Kessler: I never touch the wires. What wires have I touched? Sam: Don't argue with me! Just do as I say. It's for your own good. Mr. Kessler: When do I argue with you? Sam: You always argue with me. You're always giving me trouble! Mr. Kessler: No one ever said I give anyone trouble. Sam: You're giving me trouble right now! Mr. Kessler: How? How am I giving you trouble? Sam: You don't listen to me. And if you keep arguing and contradicting me, I'll stop coming to see you. Mr. Kessler: (worried) I promise. I promise I will listen to you one hundred percent. Sam: Okay. Now promise me you'll stop touching the lamp in the bedroom. Repeat it to yourself: "I will not touch the lamp!" Mr. Kessler: (indignant) I never touch the lamp. What lamp? Sam: Goddammit, stop arguing with me! Mr. Kessler: When do I ever argue with you? Each time I heard a different permutation of this argument, I felt a wave of protectiveness toward both father and son. Dementia was punishing them in the same way they had always punished each other. And while Mr. Kessler would quickly forget their arguments, they accumulated in Sam's mind until his frustration and anger boiled over--as did his guilt. And when Sam berated himself for losing his temper, I felt as if I were failing both of them. Although I had grown accustomed to feeling helpless when confronted by Mr. Kessler's distress, I thought that surely I could help Sam. One day, after another bad fight, I took Sam aside and showed him photographs of the healthy brain and the dementia brain, with the hippocampus pitifully shrunken to half its normal size. Staring at the tinted images, Sam looked appropriately somber, struck by the dimmed regions of the dementia brain. Here was indisputable evidence that his father was no longer the person that Sam had been fighting with for decades. Yet only an hour after Sam viewed these photographs, he and his father were shouting at each other again. It was a lesson to me. Just as I had mistakenly regarded intimate moments with Mr. Kessler as touchstones of closeness, I mistook Sam's moment of clarity for long-term understanding. In fact, each time I saw a look of somber realization flash across Sam's face, or caught him tenderly reaching for his father's hand to make up for some harsh words, I felt he had finally achieved a sense of acceptance. But invariably Mr. Kessler would do or say something that provoked another outburst, and the same disbelief welled up inside me. It was as if my conversations with Sam about his father's condition had never taken place. Every day it seemed we were starting from scratch. Who, I sometimes wondered, was suffering more from memory loss, Sam or his father? Excerpted from Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain by Dasha Kiper All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.Table of Contents
Foreword | vii |
Preface | xix |
1 Borges in the Bronx Why We Can't Remember That Alzheimer's Patients Forget | 3 |
2 "The Weak Child" Why It's So Hard to Change Our Responses | 22 |
3 Dementia Blindness Why It Takes So Long to See the Disease | 40 |
4 Chekhov and the Left-Brain Interpreter Why We Believe That the Person We Used to Know Is Still There | 56 |
5 The Insistent, Persistent CEO Why We Fee! Patients Are Still Capable of Self-Awareness | 73 |
6 When Every Day Is Sunday WHY We Dispute a Patient's Reality | 89 |
7 My Dinner with Stefan Zweig Why We Take Patients' Words and Actions Personally | 101 |
8 The Mastermind Why We Continue to Rely on Reason | 113 |
9 Ah Humanity Why We Attribute Intention to Patients' Behaviors | 132 |
10 When the Right Thing Is the Wrong Thing Why It's So Hard to Let Co of Blame | 143 |
11 Word Girl Why We Persist | 159 |
Epilogue | 181 |
Acknowledgments | 187 |
Notes | 191 |
Index | 223 |