Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain
288
Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain
288Paperback
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Overview
“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
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.
Product Details
| ISBN-13: | 9780399590559 |
|---|---|
| Publisher: | Random House Publishing Group |
| Publication date: | 07/16/2024 |
| Pages: | 288 |
| Sales rank: | 592,924 |
| Product dimensions: | 5.19(w) x 8.00(h) x 0.56(d) |
About the Author
Read an Excerpt
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?