The Last of His Mind, Second Edition: A Year in the Shadow of Alzheimer’s

By John Thorndike

The second, expanded edition of this acclaimed memoir by an Alzheimer’s caregiver living with his father during his final year includes a new introduction that illustrates the immense toll of the disease, important lessons from the author’s experience, and a readers' guide.

Joe Thorndike was managing editor of Life at the height of its popularity immediately following World War II. He was the founder of American Heritage and Horizon magazines, the author of three books, and the editor of a dozen more. But at age ninety-two, in the space of six months he stopped reading or writing or carrying on detailed conversations. He could no longer tell time or make a phone call. He was convinced that the governor of Massachusetts had come to visit and was in the refrigerator.

Over six million Americans suffer from Alzheimer’s, and like many of them, Joe Thorndike’s one great desire was to remain in his own house. To honor his wish, his son John left his own home and moved into his father’s upstairs bedroom on Cape Cod. For a year, in a house filled with file cabinets, photos, and letters, John explored his father’s mind, his parents’ divorce, and his mother’s secrets. The Last of His Mind is the bittersweet account of a son’s final year with his father and a candid portrait of an implacable disease.

It’s the ordeal of Alzheimer’s that draws father and son close, closer than they have been since John was a boy. At the end, when Joe’s heart stops beating, John’s hand is on his chest, and a story of painful decline has become a portrait of deep family ties, caregiving, and love.

• Language: English
• Publisher: Swallow Press
• Release date: Sep 7, 2021
• ISBN: 9780804041201

John Thorndike

John Thorndike is the author of three novels: Anna Delaney’s Child, The Potato Baron, and A Hundred Fires in Cuba, as well as a previous memoir, Another Way Home. He lives in Athens, Ohio.

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The Last of His Mind

THE LAST OF HIS MIND

A Year in the Shadow of ALZHEIMER’S

SECOND EDITION

JOHN THORNDIKE

Swallow Press

Athens, Ohio

Swallow Press / Ohio University Press, Athens, Ohio 45701

www.ohioswallow.com

Second edition published 2021

paperback isbn 978-0-8040-1236-2

electronic isbn 978-0-8040-4120-1

Second edition introduction © 2021 by John Thorndike

Cover design by Adonis Durado • www.adonisdurado.com

© 2009 by John Thorndike

All rights reserved

To obtain permission to quote, reprint, or otherwise reproduce or distribute material from Swallow Press / Ohio University Press publications, please contact our rights and permissions department at [phone] or [phone] (fax).

Printed in the United States of America

Swallow Press / Ohio University Press books are printed on acid-free paper ™

Library of Congress Cataloging-in-Publication Data

Thorndike, John.

The last of his mind : a year in the shadow of Alzheimer’s / John Thorndike. p. cm.

ISBN 978-0-8040-1122-8 (hc : alk. paper)

1. Thorndike, Joseph Jacobs, 1913–—Mental health. 2. Alzheimer’s disease—Patients—United States—Biography. 3. Editors—United States—Biography. 4. Authors, American—United States—Biography. I. Title.

RC523.T575 2009

362.196'8310092—dc22

[B]

2009026118

For the radiant Maximo Holst Thorndike

It was all leaving her in slow, imperceptible movements, like the tide when one’s back is turned: everyone, everything she had known. So all of grief and happiness, far from being buried with one, vanished beforehand except for scattered pieces. She lived among forgotten episodes, unknown faces bereft of names, closed off from the very world she had created; that was how it came to be. But I must show nothing of that, she thought. Her children—she must not reveal it to them.

—James Salter

Contents

Acknowledgments

Introduction to the Second Edition

The Last of His Mind

Reader’s Guide: The Last of His Mind

Acknowledgments

Thanks to my readers: Lois Gilbert, Sandy Weymouth, Janir Thorndike, Alan Thorndike, Ellen Thorndike, Bob Ginna, Natalie Goldberg, Eddie Lewis, Henry Shukman, Biddle and Idoline Duke, Paul Kafka-Gibbons, Ted Conover, Kathy Galt and Beth Kaufman.

Thanks to Harriet Guyon, Jack Lane and Marion Prendergast for the spirited and tender care they gave my father.

Thanks to the clear-sighted staff at Swallow Press. As a writer, I’ve never been treated better.

Thanks to the Ohio Arts Council for a 2007 Individual Excellence Award.

And thanks to three havens where writing came easier: The MacDowell Colony, The Virginia Center for the Creative Arts, and the Brooks Free Library of Harwich, Mass.

Introduction to the Second Edition

My father died at ninety-two. If I live as long as he did, I have fourteen years ahead of me. Along the way, of course, I might get hit by a bus—which is how my parents referred to an untimely death. Cancer or stroke could take me, or Alzheimer’s might creep in sooner than it did with my father.

His dementia didn’t overwhelm him until a year before he died. Alzheimer’s is ultimately harder on younger people, those in their sixties, seventies, or eighties, because they’re apt to live with it longer. The mind goes, but the body bears up, sometimes for a decade or more.

I bow to those many women and men who balance daily care for a dementia patient with the demands of their own busy lives. Since my dad died I’ve talked to scores of caregivers, both intermittent and full-time, and their stories often remind me of how easy I had it. Yes, I gave up most of my life for a year. But when I moved into my dad’s house, he was ninety-one and frail. Millions of caregivers are looking after dementia patients who might live for five more years, for ten, for fifteen.

As a friend’s wife says, Human beings can handle anything as long as they know there is an expiration date. But with Alzheimer’s there rarely is. We pitch in, knowing that the person we’re caring for may one day forget everything, including us. What we can’t know is how long they’ll continue in that state. As the months pile up, as the years go by, this can wear down even the most devoted caregiver.

I WAS GOOD with my father, but terrible with my mother’s mother. She died after several years of what we then called senility. She almost certainly had Alzheimer’s, but at the time that wasn’t a disease people talked about. My first clear glimpse of it came on a visit to her nursing home, after my mother and aunt helped get her dressed, and we all walked down the corridor to the elevator. When the door opened, Gran entered, then turned around to look out at the hallway. Well, she announced, I don’t know where I am, but everything’s all right.

Recently, I was trying to figure out when she died. My guess was about 1969, and I went online to see if that was right. To my dismay, I discovered that she lived on in that Connecticut nursing home until 1975, three years after my mother died—and not once, in all that time, did I ever go to see her. I don’t know if anyone did. Not my brother, he admits. Not my cousin. Perhaps we all thought it was useless because she wouldn’t know who we were. But to imagine her in that home, old and confused and alone, now horrifies me. It’s true that I was out of the country for half those years, wrapped up with my marriage and divorce and young son. But Gran had been a warm and lovely presence when I was a child. Didn’t I even wonder how she was doing? How could I, and the rest of us, have abandoned Anna Taylor Lemont so completely? It torments me.

And across the U.S. today, how many Alzheimer’s patients live as my grandmother did, with rarely or never a visit from family and friends? It seems a travesty, and I’ve been part of it. It’s an indication, I think, of how difficult and painful this disease can be for all who are touched by it.

THESE DAYS MY grandmother’s dementia unnerves me in yet another way. Because the disease has affected both sides of my family, I’m more likely to have inherited one of the risk genes for Alzheimer’s. About a quarter of the U.S. population has a copy of the APOE e4 gene, and around 2 percent carry two copies of the gene. One copy doubles the lifetime risk of developing Alzheimer’s, and those with two copies are three to five times more likely to get it.

The dominant predictor for Alzheimer’s, however, has always been one’s age. We’re increasingly vulnerable as we get older, and by the time we’re eighty-five, a third of us will suffer from the disease. Females fare worse than males, and two-thirds of all Alzheimer’s patients in the U.S. are women—though that’s true in part because they live longer than men.

The statistics look worse the older we get, and there’s not much we can do about it. As advised, I try to eat well, exercise steadily and get enough sleep. These are logical practices, given that brain health depends in part on bodily health. I don’t do crossword puzzles or play Scrabble very often—but what the hell, I write books. Researchers agree that frequently stimulated brains will wind up with fewer beta-amyloid deposits. However, the studies also explain that the most helpful stimulation is from early and middle life, which for some of us is long gone.

In spite of various clinical trials, the list of FDA-approved medications for Alzheimer’s has hardly changed since my father died in 2005. Three of the approved drugs are cholinesterase inhibitors, and the Alzheimer’s Association notes that people taking such drugs performed better on memory and thinking tests than those taking a placebo. They add, however, that the degree of improvement was small.¹ My father took one of those drugs for a time—Aricept—but to no clear effect.

The latest drug to win FDA approval is aducanumab, which will be sold by Biogen under the trade name Aduhelm. It’s likely to be prescribed for early- and midstage Alzheimer’s patients, and will be administered monthly by infusion. Clinical trials have shown that it lowers the amount of amyloid plaque in the brain, but its ability to slow cognitive decline is still in question. One Biogen trial showed aducanumab to be mildly effective, but a second trial yielded no benefits over the placebo.

The Alzheimer’s Association has welcomed the drug, which is understandable, given the long wait for a medication that will alleviate one of the country’s major health care problems. Critics of aducanumab point out that the FDA ignored the findings of its own panel of independent advisers, which recommended, in the fall of 2020, that the drug not be approved. Also worrisome are the potential side effects. Some 40 percent of the patients in the original trials suffered from painful brain swelling, and about 17 percent from small cerebral hemorrhages. To monitor these problems, patients will take MRI brain scans twice a year.

Trials are underway for several other Alzheimer’s drugs, but there’s nothing in sight that will cure the disease. We hope at best to slow it down—and even this can be wildly expensive. Biogen has set Aduhelm’s price at $56,000 a year. Medicare may cover 80 percent of this charge, but if it does, and many patients sign up, the cost could swamp Medicare’s budget. Nevertheless, as the first drug approved for Alzheimer’s in eighteen years, it’s a ray of hope for some.

GIVEN THAT OLD age is bearing down on me, and I’m likely to be carrying some risk genes, I have to wonder where I’m headed. Not into a nursing home, if I have any say about it. My father, who rarely asked for help of any kind, made one request of me early on. It was a demand, really. After a visit to one of his friends in a nursing home he told me, Don’t ever put me in a place like that. In recent years I’ve visited perhaps a dozen such homes, and I concur. I see how they can be necessary for some patients, but like most Americans I’d rather die at home.

Most Alzheimer’s patients also want to live at home, and more than two-thirds of them do—though that statistic changes when the dementia becomes more severe. And while the majority of Alzheimer’s deaths still take place in nursing homes, in the last fifteen years the number of those dying at home has doubled to over 25 percent.

Perhaps I’ll wind up living with my son. I don’t want to saddle him with the job—but then, I had a deeply rewarding year with my father, and I’m forever glad that I got to spend so much time with him. We hadn’t been that close since I was a child. Typical of many Americans, I left home for school, then went off to work, and never again saw my dad for more than two or three weeks a year. After I moved in with him, our lives were joined.

AS ALZHEIMER’S STOLE my father’s memory and speech, everything became more difficult. But again I was lucky, for he’d always been a collector, a conservator of letters, notes, photographs, and newspaper clippings. In the evenings, as he sat in his reclining chair, reluctant to start a sentence he’d have a hard time completing, I picked out letters from friends and family, or carbon copies of letters he had sent to others, and read him passages I thought might interest him. I glanced at his face as I read, but could not be sure how much he understood. Possibly quite little, though he seemed attentive.

Over several months I read, or at least glanced at, every letter, note, and clipping in his house. There might have been ten thousand of them. Not all were personal, but some—a note my mother wrote him after they separated, a letter from the father of a boy who’d killed himself—went straight to my heart. Night after night there were only the two of us in that quiet house, with the television put away long ago, and never an evening visitor. Empty hours, you might say, that I was trying to fill. But without them, would I ever have gone through those thousands of letters, and discovered so much about my father’s life?

IT WAS NOT a given at the start that I would leave Ohio and move in with my father on Cape Cod. I didn’t want to abandon my friends, the upkeep of the houses I’d built, the volleyball and tennis I played every week. But it was growing clear that my father was going to need me. Those were early days, when Dad was first forgetting the way home in his car, and buying Christmas cards for a nonexistent great-granddaughter and great-great-granddaughter. As I imagined living with him around the clock, day after day, I wondered if the job would crush me. At one point I laid out my dilemma to a friend, Kathy Galt, who over many years had been steadfast with her own family. I told her I might be called on, but didn’t know if I could handle it. We talked it back and forth. She understood what I’d be giving up, and what I’d be taking on. She listened to me, but in her own life she’d already made plenty of decisions like this.

When it comes to a choice, she said, do what you can’t do later.

Note

1 Alzheimer’s Association, FDA-Approved Treatments for Alzheimer’s, TS-0087, updated August 2019, p. 2, https://www.alz.org/media/documents/fda-approved-treatments-alzheimers-ts.pdf.

The Last of His Mind

December

My father sleeps through the December afternoon. He has always resisted a nap, doesn’t believe in them, yet now lies on top of his bed wearing a winter coat and his red fleece hat, snoring lightly. He’s ninety-one. For an hour he doesn’t move, his head tilted back against the pillow and his hands interlaced on his chest. Another hour and the light begins to fade outside. Finally I walk down the hall and tap on the doorjamb. I stand beside the bed, listening to his shallow breaths and watching his old face: his half-open mouth, the crust in the corners of his eyes, his patchy skin and tumultuous eyebrows.

Dad? Do you want to wake up?

He opens his good eye but doesn’t say anything, just stares without moving. Outside, the long Vermont dusk is settling. Every Christmas Dad stays in this downstairs bedroom in my brother’s house—but now his eye shifts from chair to window to door and back, making me wonder if he knows where he is. After a couple of minutes he hunches himself up against the headboard. I try not to hurry him, because I’m always groggy myself after a long nap.

Resting in bed, he wears the old pair of slippers Al has given him, wide and brown and flattened at the heels. His feet are too swollen to fit into his shoes, and there’s no chance this year that he will tramp across the meadow with the rest of us through six inches of new powder, as he did last Christmas.

When I turn on the table lamp with its cheerful yellow glow, he sits up and lowers his feet to the floor.

What time is it?

Four-thirty, I say, reading off the digital clock on the table beside him.

Is it night?

Almost.

His face is still lopsided from sleep, but both eyes are open. He takes off his hat and flexes his bony hands on the edge of the bed. I stand beside him until my brother walks in with some papers. Al has drawn up a couple of documents that will allow him to take over more of Dad’s finances. Someone has to do this, because he can no longer keep up with them on his own. He wants to balance his own checkbook, but I’ve watched him try and he can’t do it. He keeps records but they’re scattered, and he’ll sit at his dining room table for thirty or forty minutes trying to figure out what’s wrong. Dates, names, money, math—it’s all slipping away from him.

Al takes his time. He asks Dad if he’s warm enough, if he’d like a glass of water, and gives him some time to finish waking up. But when he holds out one of the documents and explains how this will make things easier for all of us, Dad balks.

I’ve given up too much already. I don’t want to sign anything.

All this one does, Al says, is add my name to your bank account so I can make sure the bills get paid. It’s still your money. There won’t be any change for you at all.

There’ll be a big change. I won’t be the one in charge anymore.

He doesn’t look at us, but he knows what’s going on. His mouth turns down as if we have already deceived him.

Dad, I tell him, you’ll always be in charge. All you have to do is talk to Al and he’ll do whatever you like.

We’ve never backed our father into a corner like this. We’ve asked him to stop driving and to accept help with his medications, but he’s never had to sign anything. Al stands in front of him with pen and paper, but Dad shakes his head. He stares down at the floor, at the carpet, at his feet in their slippers. I don’t want to.

In the boxy silence that follows his refusal, I become aware of my patience, as if it’s a commodity I’m spending. I don’t know how much I have.

Al tries to explain. If checks bounce, he tells Dad, or if bills don’t get paid, it’s a problem for everyone. I noticed this fall that some of your bills were overdue. It would really make things easier for us if you’d let me pay them.

Dad looks away. For a long time he doesn’t say anything, and when he finally glances at us I think he’s going to give in. Instead he says, I want to go home.

He stares again at his feet. The windows are now black with night.

I want to go home and take care of my own money and be in my own house.

We’ll be going back, I assure him. I’m going to drive you back after Christmas.

I want to go now.

How desolate this sounds. I am tied to him. I have brought him here and must take him back, and now have a bleak vision of the two of us sitting in his house on Christmas Eve on snowless Cape Cod, far from my brother and the rest of the family. We would eat some small dinner, sit in his living room and exchange a present. We would read. It makes me lonely just to think about it. Dad’s two favorite times of year are the family reunion in August and Christmas at Al’s in Vermont—yet now he wants to go home.

I want to keep my house, he says.

Your house is yours, Dad. We’re not taking that away.

But he will not sign anything, not tonight. Al puts the papers back in a folder, and we reassure Dad that both house and money are his, and he can make all decisions about them. Slowly, by talking about our holiday plans, we bring him around. Al’s two boys, Porter and Ted, will be here, some friends and neighbors will stop by, and we’ll telephone our other brother, Joe Jr., and my son, Janir, who’s spending Christmas with his wife’s family. Dad stops talking about going home, but it’s another hour before the stark look leaves his face, of someone hunted and trapped.

OVER DINNER HE’S still not his old self. He sits warily at the table with his hair uncombed and his eyes restless, looking at his food, then around the room. He turns to my sister-in-law and asks, But where are the children?

Al and I look at each other. We were the children, long ago. By now even our own children are adults.

Tomorrow, Ellen assures Dad. Some children will be coming over tomorrow.

This is true, but I’m sure my father is thinking about children young enough to be swept up in the mystery of Christmas. Back on Cape Cod, before we left his house, he showed me a pair of Christmas cards he’d bought, one for my great-granddaughter and the other for my great-great-granddaughter. He has, in fact, only a granddaughter, my brother Joe’s two-year-old Eliza. She’s miracle enough, the first female born to our line since Aunt Annie, Dad’s father’s sister, in 1867.

My father is not the kind to take over a conversation, to assert himself or steer the talk his way. He has things to say about history and politics and economics, and he’ll tell an occasional story, but he has to be drawn into it. During the meal the conversation swirls over his head, until I coax out of him a little vignette he once told me about Oliver Wendell Holmes.

Well, Dad says, leaning forward, I believe he was eighty-six. As he speaks he rests his palms on the white tablecloth. He was out for a walk with an old friend in Washington when a woman passed them on the sidewalk. She was young and attractive and beautifully dressed, and she gave the two old gentlemen a smile as she passed by. ‘Ah,’ sighed Holmes to his friend, ‘to be seventy again.’

Dad’s memory is irregular, and sometimes his language breaks down, but a little story like this flows out intact. It makes me smile, in its defiance of old age. This is the self-reliant father I’ve always known, with his dry humor and bank of anecdotes—not an old man who wakes confused and says he wants to abandon Christmas.

Usually after dinner he sits in the living room, perhaps with the rest of his wine, and at least listens in on the talk. But tonight, as soon as the plates are cleared, he thanks Ellen for the meal, says good night to the rest of us, and shuffles along the downstairs hallway, leaning on his cane. It pierces me, how old he looks, how even now he’s passing out of our lives. His bedroom is carpeted and cheerful, but also the coldest in the house, and he keeps the door open in hopes of warmth. I watch him go into his room. I can see his bed through the open door and keep expecting him to climb into it, but for ten minutes he doesn’t appear. He must be changing into his pajamas, I think, and I don’t want to barge in on him. Twenty minutes and still no sign of him, so I walk down the hall and knock on the jamb.

He’s sitting on the edge of a chair with his long underwear bunched around his ankles and his bare legs shaking. He’s managed to get his pants off but not his socks, and these have stopped him from peeling off his long johns. He looks up at me, then down at his knees.

I’m having a little trouble here.

His legs are pale and thin and nearly hairless. I kneel in front of him, feeling awkward, and pull off his socks, then his long underwear. I’ve never dressed or undressed him before.

We get his shirt off and his pajamas on, then a sweater, and he climbs into bed with his legs still shaking. I pull the blanket and quilt up to his chin, and when he’s completely settled he says, Thank you.

For the past few days he’s been thanking me constantly. When I serve him a meal, when I bring him his coat, when I open a door for him, he thanks me. The formality of it has started to get on my nerves. He never says Thanks or Great or Okay, it’s always a precise Thank you. It makes me feel like an attendant.

I’d like to sit down on the bed beside him, but I’ve never done anything like that, not since I was a child. I twitch his quilt around and ask, Dad, how long do you think you’d have sat on that chair before giving me a call?

I daresay quite a while.

I laugh, but he doesn’t. He has never liked to be helped, and only puts up with it when truly stumped.

IN THE MUFFLED early light I come downstairs thinking of the Christmases of my childhood, when Al and I woke our parents with a string of Christmas bells sewn to a band of cloth. A wave of nostalgia runs through me. Where have