'Healing Touch' Stories Portray Loss and Laughter Pulitzer Prize-winning author Richard Russo edited and contributed to a new volume called A Healing Touch: True Stories of Life, Death, and Hospice. He says the book that he and his five fellow writers thought would be about loss and grief turned into something very different.

'Healing Touch' Stories Portray Loss and Laughter

'Healing Touch' Stories Portray Loss and Laughter

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The writers who contributed to A Healing Touch: True Stories of Life, Death, and Hospice. From left: Richard Russo, Bill Roorbach, Monica Wood, Susan Sterling, Wesley McNair and Gerry Boyle. Rosemary Herbert hide caption

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Rosemary Herbert

One day in 1994, Lee Duff, a school administrator in Maine, came home and couldn't find his wife, Ann. When she finally walked through the door, she had a puzzled, anxious look on her face and told him, "Funny thing just happened. I couldn't remember how to get home."

The account of Ann Duff's slow decline into Alzheimer's and her husband's devotion is among the stories in A Healing Touch: True Stories of Life, Death, and Hospice, a new book from Down East Books edited by Richard Russo, the Pulitzer Prize-winning novelist of Empire Falls.

Russo, who played racquetball with Lee Duff, says that when Alzheimer's strikes someone who is relatively young, the decline is steep and fairly rapid. He tells NPR's Scott Simon that the Duffs' ordeal was "horrific."

Racquetball for Lee became "kind of an oasis ... to hit a ball and hit it as hard as you can," Russo says, speaking from Colby College in Maine. The author likens it to "draining the poison."

The Duffs' story is about the loss of identity, of watching a loved one turn into a veritable stranger. "When you begin to lose yourself," Russo says, "the caregiver begins to run the risk of losing some of himself, too."

Russo says Lee Duff knew he needed help caring for his wife or he would be in grave danger himself. He sought out in-home caregivers before eventually placing her in a facility that could provide around-the-clock care.

Ann Duff lost her battle with Alzheimer's after about nine years.

In A Healing Touch, Russo and five fellow authors — Gerry Boyle, Wesley McNair, Bill Roorbach, Susan Sterling and Monica Wood — crafted portraits of people who have passed through hospice care in and around Waterville, Maine.

One of the biggest surprises for Russo and the other contributors was that the book they thought would be about loss and grief turned out to be about life, with lots of laughter and joy.

"I think for the people who told us their stories and for people who read this book, they're going to come to the conclusion that whatever it is that they may be going through right now, they're not alone," Russo says.

Lee Duff, he says, now counsels Alzheimer's patients and caregivers.

Sales of the book will benefit the Hospice Volunteers of the Waterville Area.

Excerpt: 'A Healing Touch: True Stories of Life, Death, and Hospice'

"A Healing Touch: True Stories of Life, Death, and Hospice"

'You Know Who You Are'

I met Lee Duff over a decade ago at a place called Champions when I was teaching at Colby College in Waterville. There were no champions at Champions, at least none I recall, but there were some pretty fair racquetball players. Lee was one, I another. Lee's game was a lot like Lee: pragmatic, resourceful, buoyantly optimistic. Beat him fifteen to two in the first game of the match and he'll take the ball, stride to the service line, point his racket at you and say, "Your ass is mine." Then, having served notice, he serves the ball, and if you're not ready, too damn bad. The last thing he wants is for you to savor your victory. There's work to be done and he's just the man to do it. When he gets the lead, he announces the score as if through a bullhorn, an unsubtle reminder of whose property your ass is (not yours). To his way of thinking, the fact that I'm fifteen years his junior is a minor inconvenience. He's beaten me before, so why not again? His joy in what transpires on that court, win or lose, is bounded only by its walls. "Trombones!" he bellows, when he goes ahead seven to six. I'd been playing with him a good month before I caught on to that particular allusion (76 Trombones, get it? get it?).

It was clear from the start that we both derived the same benefit from sport in general, and racquetball in particular. "It drains the poison," was the way Lee liked to put it, and I knew just what he meant. As a writer and teacher, I spent most of my time living in my head and trying to get my students to live in theirs, or to at least visit those heads now and then. Lee spent much of his time suffering fools, something he didn't do gladly but was part of his unofficial job description as superintendent of schools in nearby China/Vassalboro/Winslow. In the winter (half the school year in central Maine) when snow was a possibility (often), his day began at four in the morning, by which time he had to be up listening to the weather service reports in order to decide whether circumstances warranted canceling school. Canceling and not canceling it got him pretty much the same reward, a torrent of abuse from parents, teachers, and bus drivers. When school got out, there'd be a different set of challenges: budget meetings, policy meetings, parent group meetings, individual parent meetings, school board meetings, disciplinary meetings (of both the student and teacher variety). As an academic, I knew all about meetings, and knew that Lee had it far worse than I did.

In the middle of the day, though, three days a week, there was the oasis of racquetball, a quick, furious, very physical sport that demands concentration and anticipation. If you don't anticipate your opponent's forehand, for instance, and step in front of his shot, the ball will raise a welt the size of a small orange on your tender backside. It hurts like hell, but it's pleasurable indeed compared to an irate parent explaining why you're a moron for canceling school on a day when it didn't snow as much as predicted. Sympathy—Lee likes to remind me, is located in the dictionary between shit and syphilis.

Lee grew up on a dairy and potato farm near Houlton, Maine, the ninth of ten siblings, facts that go a long way toward explaining his pragmatism, if not his optimism. I don't know where the latter comes from, and I doubt Lee does either. New England is not known for begetting optimists, and northern Maine's shallow, hardscrabble soil and long, bitter winters are more likely to make you a Calvinist or a Red Sox fan or, tragically, both. When Lee was seven, he already had adult responsibilities on the farm. Three of his older brothers and one sister were serving overseas in the Second World War, which meant that much of their work fell to him. Even at that young age, he worked six days a week. Up at the crack of dawn or before, he had to milk the cows before school started, and after school there were endless homework-preventing chores. He attended a one-room school that housed kindergarten through eighth grade, and like most farm kids, he lost two or three weeks every autumn to the harvest and another two or three in the spring to planting. All of which explains why Lee, despite having a genuinely curious mind and lively intellect, was a mediocre student. He tells a story that goes a long way toward explaining the kind of man he would later become.

When he was ten, one of his many jobs was driving the tractor, and one particular autumn found him harrowing a field long after dark. It was bitter cold, frightening work for a kid, all alone on a tractor, traveling over unlevel terrain. The tractor's headlamp shone off into black woods that surrounded the sloping field on three sides, occasionally locating bright eyes among the trees. A cat's eyes? A dog's? A deer's? A bear's? No, probably not a bear's, but maybe. If it was a bear, could he outrun it? No. Even trying would risk death or dismemberment. You don't jump down from a tractor in the dark, not when it's trailing a harrow. Lee doesn't remember how much of the field he'd worked when the pin that attached the harrow to the tractor either broke or popped free, but he heard it go and felt the harrow detach. He also knew that it was pointless to search in pitch darkness for a pin that was probably broken anyway. He knew his father would not be pleased, but what choice did he have? There was nothing to do but drive the tractor home. He remembers thinking, "I can't reverse what's happened. I can't control it. It's gone."

When he got home, his father was more than displeased. You don't come home with the job undone, he explained. Life demanded that you be resourceful. Problems had solutions. He should have found a way. He'd not only failed, he'd done the one unforgivable thing: he hadn't tried. Another kid would have resented the unfairness of such criticism. First, was it even true that every problem had a solution? More to the point, wasn't the solution to the present problem more likely to reveal itself in the morning, in the light of day? Lee might have raised these points but did not. He understood his father knew perfectly well he was being unfair, but was also trying to teach him something about life, which could be far more unjust than an angry but caring parent. Problems might seem insurmountable, but in the end they were just problems. When you don't know what to do, you try something. If that doesn't work, you try something else. You keep trying. You don't come home until the job is done.

When Lee told me this story, I couldn't help thinking how different my own life experiences had been as a kid. I'd not been overburdened with adult responsibilities, or any responsibilities, really, except for doing well in school, but somehow I'd arrived at many of the same conclusions about the best way of dealing with life's problems and inequities. "Do some goddamn thing, even if it's wrong," my own father always used to say, usually right before doing the wrong thing, but in this respect I was very much his son. I hated both inaction and the caution that led to it. And I had a formative story of my own.

When I was a freshman in high school, my friends and I often stopped at this one particular market on the way home from school. There was a clerk there who liked to give us a hard time, a pseudo-intellectual fellow who was forever insinuating we were none too bright. One day, to demonstrate this thesis, he gave us a puzzle to solve. It was a kind of pyramid, wide at the bottom and narrow at the top, made up of rectangular boxes. He drew it for us on a piece of paper. You could start anywhere you wanted, inside or outside the pyramid. Your task was to draw a continuous line through each side of every box, but having crossed a line you weren't allowed to cross it a second time. My friends and I worked on the puzzle for the rest of the afternoon without success. "It can't be done," one of my friends assured me, by which I understood him to mean that it was difficult. A month later I was still trying to solve the pyramid, and probably wouldn't have given up even then if the smirking store clerk hadn't finally taken pity and let me in on the secret: there was no solution to the puzzle. He'd set us an impossible task for the pure pleasure of watching us fail.

But here's something to consider: The truth doesn't always set you free. I wasn't sure I believed him. Did he know there was no solution, as he claimed? Or had he just not found it? I was pretty sure I was smarter than he was and kept imagining the look on his face when I showed him how I'd succeeded in doing what he claimed was impossible. Hubris, sure, but it went beyond that. The puzzle had become part of the ritual of my days. Giving it up meant not just defeat but loss. If I no longer had the puzzle, what was there to replace it? Even now, as an adult, I still remember that pyramid with something like affection. It may even have been part of my early training to write novels, an activity that places a premium on both patience and dogged resourcefulness in the face of seeming impossibility. You don't know what to do far more often than you do, which is why the novelist's mantra is, or should be: Try something. If it doesn't work, try something else. Keep trying. There is a solution. What if there isn't? That's a question every good novelist knows better than to ask.

By the time Lee and I met, life had taught us that there were problems without solutions. But it had also taught us that complex problems with difficult solutions often look for all the world like impossible problems with no solutions. The trick is to know the difference, and often the only way to be sure is to try. Compared to giving up, it's a healthy and productive philosophy that's likely to build character. It works. Until one day it doesn't. Then you're in for a bad time, because your greatest strength becomes a weakness, your primary character asset a liability. Your reluctance to give up, to admit defeat, to recognize futility for what it is now guarantees that you will suffer more than you need to.

One day in 1994 Lee came home from school and was surprised to discover that Ann, his wife, was not there. Had he forgotten a meeting? They both had very busy schedules. She was a tireless volunteer at their church, and her fair-mindedness and industry made her much sought-after when it came to committees. Lee himself had just gotten out of one meeting and he'd come home for a quick bite to eat before driving back in to town for another. It was odd, though. Usually, Ann left a note if they weren't going to eat dinner together, and there wasn't one. Nor was there a message from her on the answering machine, and the house didn't feel like she'd been there recently. He was talking himself out of becoming anxious when he heard her pull in. A couple of minutes later, when Ann came into the kitchen, she looked more puzzled than worried. "Funny thing just happened," she told him. "I couldn't remember how to get home."

Ann Barnes grew up in Houlton, Maine, the middle of three children, about five miles from the Duff potato/dairy farm, either that or a world away, depending on how you measure these things. Hers was a distinguished Maine family. Her grandfather, who studied privately with Oliver Wendell Holmes, had been chief justice of the Maine Supreme Court, despite never having attended law school. Her father was a county attorney who became a Maine Senator and Speaker of the House. That's aristocracy in northern Maine, or anywhere in Maine, probably anywhere in New England. The Barneses were liberal Baptists who placed a premium on education, providing in both respects a contrast to the Duffs, who belonged to what Lee remembers with a wry smile as a "strict country church," as unyielding and unforgiving in its orthodoxy as the shallow, rocky soil they tilled. Of course one of the beauties of living in a place as sparsely populated as northern Maine, at least if you like the idea of democracy and all that it implies, is that rich or poor, educated or uneducated, aristocratic or plebian, there's a good chance you'll end up in the same school. Once there, you might meet somebody different from yourself. She might be beautiful. You might fall in love with her. You might stay in love with her for the rest of your life. Because as good as class and religion and education and money are at establishing boundaries, human nature is even better at defying them.

The Ricker Classical Institute in Houlton was such a place. One hundred kids. Four grades. Lee and Ann met there and dated throughout high school. Ann's father was impressed with young Lee Duff's sobriety and industry, his seriousness, and, yes, his resourcefulness. "Is there anything you can't do?" Ann's father once asked him, amazed by Lee's versatility. But then the man hadn't grown up on a farm, where plumbing, electrical, woodworking, and engine repair are all part of everyday life. So, sure, he was impressed.

He also liked the fact that Lee not only loved his daughter, but also respected her. He knew his daughter could do worse. Still, in his heart of hearts, did he also believe she could do better? There was, after all, the whole wide world, and what father wouldn't want his daughter to see some of it before settling on a local boy? If Ann confided to her father that she loved young Lee Duff, that she thought maybe he might be the one, that she was never truly happy except when they were together, could he be blamed for letting her in on a little secret—that this was the way love always felt, that it could feel that way more than once?

Who could blame him if he looked forward to high school being over? Then his daughter would be heading off to Colby College, his alma mater, a prestigious and expensive liberal arts college in Waterville, Maine, and Lee to evangelical Bob Jones University in South Carolina where his siblings had gone. Then both time and distance, which also had been known to construct durable barriers against human nature, would be on his side.

But of course I'm guessing. Maybe to Ann's father, Lee's decency, industry and generosity were full and sufficient recommendation. Maybe he wanted only his daughter's happiness and was untroubled by things like class and money and religious upbringing, things that have bedeviled other fathers down through the ages. Every father wants his daughter to be happy; not very many have the ability to separate their own notions of happiness from hers. At any rate Lee sometimes suspected that Ann's parents thought she was "dating down," but he liked her family and was grateful that they seemed to like him, too. That he and Ann should go their separate ways for a while after high school seemed reasonable.

One more thing to know about the Barnes family: They had a history of Alzheimer's.

He knew. Right from the start, some part of Lee knew. Ann's forgetting how to get home was not "a funny thing," and now he began to recall other incidents. Of late, Ann had seemed uncharacteristically absent-minded. She'd walk off and leave a stove burner on in the kitchen. Opening a kitchen cabinet, Lee would discover something that belonged in the pantry, and when he went to put it there he'd find something else that belonged in the kitchen cabinet. Such mishaps were minor, insignificant in and of themselves, but now he had to consider another terrible possibility. Had Ann simply forgotten to turn off the burner, or did she not remember its ever having been on? Was she hurriedly putting things in the wrong place, or could she not remember where they went?

There was a difference, and Lee knew, deep down, what the difference was, that it had a name. But it wasn't a name that could be spoken out loud, at least not yet. And there was another thing he was sure of. Ann knew too. Only fifteen years earlier she'd gotten a call from her older brother, asking her and Lee to drive to Houlton to help assess her father's condition, which at the time was often called "hardening of the arteries." But it was Alzheimer's, an aggressive case, and by the time the family convened, her mother was black and blue from trying to deal with him. Ann and Lee had been instrumental in convincing her mother there was no way she could handle her husband any longer.

A month after the first, there was a second driving incident. This time he and Ann were returning home from Houlton in separate cars, Lee leading, Ann following. Lee noticed she kept falling behind. Even in his rearview mirror, Ann's driving didn't seem right. Worried, he pulled over onto the shoulder and she, blessedly, did too. Getting out, he found her, pale and rigid with terror, gripping the steering wheel as if her life depended on it, even with the car at rest. She'd forgotten not just how to drive, but how the car worked, what made it go faster, what slowed it, what turned it off. The harder she thought, the more foreign everything in the car seemed. It was all too complicated, as if, in the blink of an eye, a child's game of Chutes and Ladders had become a Rubik's Cube.

Frightened out of his own wits, Lee nevertheless knew that the first thing to do was diminish, if possible, Ann's panic, no easy task when his own was rising. But he took her hand and went into a catcher's crouch there on the shoulder of the road, telling her to relax, that they weren't in any hurry to get home. If she was too frightened to drive, he could come back for the car later. "I'm worried," she confessed. "I don't know what's happening."

"I'm worried, too," he admitted, but he assured her that everything would be all right. Probably she'd just suffered a panic attack. How long did they remain there along the side of the road, holding hands? Lee doesn't remember. But after a while the knowledge of how to drive a car was there again, so simple, the gas pedal to make the car go, the brake to slow and stop it, the key in the ignition to start it up. So simple.

Lee and Ann were married in Houlton, Maine, in 1957. Ann had gone off to Colby as planned but after a couple years transferred to the University of Connecticut, where she could study nursing, a program that Colby didn't offer. She was a good, industrious student, just as she'd been in high school, and she joined singing groups and acted in plays. Also as planned, Lee went to Bob Jones, where he was also a good and popular student. Neither dated. They wrote each other long letters in which they looked forward to the Christmas holiday or summer vacation, when they would be together again. Not just together. Inseparable. And so no one was surprised when, during their senior year, despite the obstacles of time and distance, despite those differences in religion, education, and class, they became engaged. People who love each other can be damned stubborn.

Well, there was one problem, at least for Ann, and it came to a head when she went to South Carolina for Lee's graduation. Ann was, had always been, an introvert. She was no shrinking violet, but was by nature both quiet and shy, and while she possessed excellent social skills, she never put herself forward, never sought the limelight, never was the first to laugh. Of course she knew that the man she was engaged to was the farthest thing from an introvert. He was not just the first person to laugh but also the second. Put Lee in a roomful of strangers and he'd find a conversation before he'd hung up his coat. He'd leave knowing everyone. In Houlton, Lee's outgoing ways hadn't been a problem because they knew the same people and were comfortable with most of them. Over time Ann had made small circles of close friends at UConn, but at Bob Jones she discovered that Lee knew everyone and everyone knew him. People sought him out, consulted him, seemed to need him in order to accomplish much of anything. Worse, he wanted to introduce her to every single one of them. And, naturally, they were curious about what sort of girl had captivated him so completely. They imagined she must be a female version of himself, another force of nature, who'd match him joke for joke, idea for idea, plan for plan. For the entire graduation weekend the spotlight she'd always shunned fell blindingly on her, a deer in the headlights.

On the drive back to Maine, she gave Lee his ring back, explaining that she didn't think they really knew each other very well, by which he understood her to mean that she didn't know him very well, and maybe there was even more to it than that. It seemed to him that Ann was more troubled by what she did know about her fiancé than what she didn't. What she'd just been offered at Jones was a glimpse of what life might be like if she married an extrovert like Lee Duff. Hell was what it might be like. A life of endless introductions and frightening social expectations for which she was ill-equipped. But she was no sooner back in New Haven and more familiar surroundings than Ann realized she'd made a mistake, because there Lee was just Lee again: kind, full of fun, utterly devoted. She'd allowed herself to be spooked by the novelty and heightened drama of the experience. No doubt the future would hold many more new experiences, but the question was, in whose company did she wish to face that future? She knew the answer. She'd known it for a long time. By mid-summer the engagement was back on.

That fall Ann would enter the final year of her five-year nursing program, much of it at Yale/New Haven Hospital, but Lee was now armed with a brand-new teaching degree. If he could land a job, they could get married. As it happened there were three area positions advertised for junior high school social studies/ English teachers in the New Haven area, and Lee applied for all three. The best was in New Haven itself and in short order the life skill that had so frightened Ann in South Carolina—Lee's ability to make friends of strangers—paid its first dividend. At the end of the interview he was offered the job. He called her at her dormitory with the news and drove over to pick her up. They went directly to a beach in East Haven, where, as they walked back and forth in the sand, they set a date and planned the wedding and the rest of their lives. The sun was still high when they'd started, long set by the time they finished their talking and planning and Lee reluctantly took Ann back to the dorm. She was late and would catch hell, but she didn't care.

With most life-threatening illnesses early diagnosis is key and being young is advantageous. Not so Alzheimer's. The younger a person is when diagnosed, the more precipitous the physical and mental decline is likely to be, and catching the disease early gets you nothing. Ann's reluctance to talk about what was happening to her prevented any official diagnosis until spring of that first year when her symptoms became undeniable. It was their grown daughter Kathy, who lived in the area, that finally convinced Lee to take her in to be evaluated, and it was then that the word they'd been unwilling to speak was finally said out loud. Ann was diagnosed with early advent Alzheimer's, and the diagnosis had an immediate and profound effect. She began a gradual withdrawal from everyday life, as if the word she'd dreaded for months now gave her permission to be ill, to acknowledge what until now she'd felt obliged to deny. Her decline now began in earnest.

For Lee the hardest part of that decline was the almost immediate loss of verbal intimacy. Within two short years Ann would go from confusing similar-sounding words to not communicating at all. Their marriage, like so many strong marriages, had been centered in language. They'd always made a ritual of the evening meal, during which their talk was as nourishing as the food they ate; talk was how they made sense of their time apart. Nothing that happened to them during the day was ever completely real until it was recounted, shared, evaluated. The day's delights, its outrages, its hilarity, its challenges, its significance—all of it was fodder for evening conversation, for the necessary planning of tomorrow. Strategy. Reassurance. Laughter. The language of devotion, of commitment.

Though it was difficult, Lee could bear the fact that Ann could no longer drive or cook or play bridge or contribute much to running the house, but it was beyond dispiriting to realize that he could no longer tell her about his day—the school board meeting that had, despite his best efforts, devolved into an angry shouting match, or the teacher and friend he was going to have to fire, or the secretary at the middle school who had once again arrived at work with a black eye and busted lip, courtesy of her husband. Such revelations now produced in Ann a disproportionate response, often abject terror. So did smaller annoyances: misplaced objects, a window that wouldn't shut right. Lee had to be careful never to raise his voice, never to allow his concerns, his fears, no matter how real, to register on his face, lest they occasion great distress. Once his confidant in all things, Ann now needed to be told, repeatedly, in word and gesture, that everything was fine, that there was nothing to fear. And so it was that a relationship based on shared truth and trust suddenly became one that relied on well-intentioned, benign lies. Lee's own growing distress, his plummeting spirits, had to remain hidden at all costs.

Even worse than Ann's failures of memory were her brief periods of terrible lucidity. As her condition worsened, she became more confused, frightened, and angry than she'd ever been. Her sudden inability to do things she'd been doing since she was a child was not lost on her, at least not all of the time. One morning when she was trying to dress herself, Lee saw that she was becoming more and more frustrated, but when he tried to help her, she turned on him in a fury, "Why don't you just shoot me?" An hour later, of course, she didn't remember having said those words, had no memory of the frustration that had occasioned them. But they were words Lee would never forget. That's one of the disease's many cruel ironies—that one person's inability to remember will cause things to happen that are forever etched in the brain of that person's caregiver. No blessed forgetting for him. Not ever.

In the beginning money was tight. Thanks to its proximity to New York City and that vast economic weather pattern known as Yale University, New Haven wasn't a cheap place to live. They rented a third-floor flat in a racially mixed neighborhood where burglaries were common but which otherwise was relatively safe. They never went out to eat and Lee vividly remembers that one month the balance in their checking account was $3.21. He bought a used 1951 Ford sedan and discovered that by shoveling just enough to get out when it snowed he could, in effect, save the parking space in front of their apartment.

It was a time of discovery. Among other things, he and Ann were discovering and inventing their marriage, the way every newlywed couple must, figuring out who would be responsible for what. Ann, who had far less experience pinching pennies than her husband, nevertheless took over the books and in no time proved she was the right person for the job. She always knew where every cent was, where the next was coming from, whether there would be enough of them to cover both foreseeable and unpredictable expenses. She also proved expert at finding good, inexpensive, nutritious food. She would have need of such rigorous managerial skills, because their first son, Bruce, was born a year after they wed, making things really interesting. In short order another child followed, and Ann quit her part-time nursing job.

Lee taught junior high for three years in New Haven, then another three in nearby North Haven, during which time he enjoyed the classroom, though he was beginning to suspect that his real calling was administration. That would pay more, for one thing, but money wasn't really the issue. Ever the pragmatist, nothing appalled Lee more than a poorly run program. Thanks to those early years on the family farm, the urge to fix anything that was broken came as naturally to Lee Duff as breathing. Unfortunately, you don't get promoted into administration by virtue of being a good teacher or even by demonstrating an aptitude for making things run smoothly. For that, as in The Wizard of Oz, you need a diploma, or, in Lee's case, certification. To qualify for an assistant principal post, he'd have to go back to graduate school; at the time the three-credit certification course at UConn cost ninety dollars, money he knew they didn't have.

But to his surprise, when he broached the subject of continuing his education with Ann, she didn't hesitate. By then she knew her husband, knew what he was good at, just as she knew how people gravitated to him, trusted him, were willing to work with and for him. None of that frightened her anymore. They would find the money. And then Lee caught a break, one that not everybody in his position would have recognized as good fortune. His first job as an assistant principal was under the supervision of a principal who was on his way out the door, just a few short years from the official retirement he'd already unofficially embarked upon. Which meant that Lee was free to do what he'd been wanting to do for years. Take a few risks. Break a few rules. Try something. If that didn't work, try something else. There was no shortage of problems in junior high schools. He had to believe that most of them had solutions. He was on the case.

* * *

Memory. Most adults suffer some loss as they get older. My grandmother was sharp as a tack well into her eighties, but when she got excited she'd forget the names of her loved ones, especially misbehaving grandchildren. Anxious to reprimand us, she first had to get the attention of whoever had transgressed. Rick, Greg, Cathie, Johnny, Carole, Jimmy. Down she'd scroll through our names, sometimes mixing in the names of her daughters, her husband, other relatives and friends. All the while the guilty kid would be standing there grinning at her, confident that there could be no punishment until the perp's identity was fixed, though sometimes, if the right name could not be located, my grandmother would point her arthritic index finger at you and say, "You know who you are!" Such small tricks of the mind are often like that, comic to all but the person whose mind is playing the trick.

When the tricks the mind plays are larger, the results can be terrifying. Some years ago my mother, then in her late seventies suffered an episode of temporary dementia brought on by some warring medications, the problem exacerbated by the fact that we were just then moving from Waterville to the Maine coast and she was in unfamiliar surroundings. We made an appointment with a doctor, but when I arrived at her apartment, she was still in her robe, and I could see immediately that she was in a state of panic. "What time is it?" she wanted to know, which led me to believe the exhaustion resulting from the move had caused her to oversleep and now she'd be late for her first visit with a new doctor. But when I told her the time, she bolted across the room at unsafe speed for a woman of her years and wrote what I told her onto a piece of paper, under which she printed in bold letters and underlined: REAL TIME. Then she sat down, visibly relieved. When I asked why she'd written down the time, her chilling reply was that later in the day she'd want to know what time it was, and now she'd have that information at her fingertips. When I looked around her new living room, I saw that every clock in it registered a different time.

For the Alzheimer's patient the world is full of such impenetrable confusions, and they don't get resolved the way my mother's confusion about the nature of time did when her new doctor got her medications straightened out. For the Alzheimer's sufferer the world becomes foreign, incomprehensible, as the familiar morphs by degrees into the unfamiliar, the strange, the incomprehensible. For that person's caregiver, the world may not be foreign, but it's equally nightmarish. Caregivers, in addition to keeping the world safe for the sufferer, also serve as interpreters of a world gone haywire. I had just a glimpse of that (all I wanted, believe me) as I sat in the doctor's office with my mother that morning, trying, without success, to help her understand why the minute hand on her watch traveled in one direction (clockwise, a term that's of little use as explanation) and never the reverse. She didn't understand why, if this was her watch, she couldn't make time operate according to her wishes. Finally, she succeeded in breaking the stem, which satisfied her as completely as writing down the time on a slip of paper had done earlier.

But here's the even more surprising thing: what I remember thinking was that although the woman sitting next to me was undeniably my mother, she was also somehow not my mother for the simple reason that my mother knew how time worked and this woman did not. In other words, what she'd forgotten during the night had stolen some measure of her identity, and it wasn't until two days later, when her memory of how time worked returned, that she was wholly my mother again.

And so it was for Lee during much of that first year after Ann was diagnosed. There she was, right before his eyes, his wife, his lover, his friend, the mother of his children, and yet she was also departing, day after day, one memory at a time, like a photograph left out in the sun, fading into whiteness. As Ann's withdrawal from the details of everyday life deepened, he began to understand the link between memory and identity, that we are all, in a sense, not so much the sum of our experiences as the sum of our memories of them. Some things we can forget without great consequence because they are not us. Ann had always loved to play bridge, but when she lost that ability she didn't cease to be Ann. But all too soon she was forgetting other things.

Where elderly people with dementia suffer a gradual decline, Ann was not elderly and her decline, as predicted, was both steep and terrifying. Within months she was beginning to forget the kinds of things you wouldn't think a human being could forget: what knives and forks are for, how to brush your teeth, the difference between food, which can be eaten, and the plate it rests upon, which cannot, how to swallow the food you've chewed, who the man is who's feeding you, who you, the person doing the chewing, are. (You know who you are! my grandmother had insisted.) And Ann's was not the only identity under attack. "Who am I," Lee often wondered, "if I'm not this woman's husband?"

It was during the second year of Ann's precipitous decline that I witnessed a snapshot of his private, ongoing hell. I knew he was struggling. Who wouldn't be? He'd lost twenty pounds, and he'd become visibly stooped under the weight he was carrying. But we'd continued our two or three times a week racquetball matches, during which he tried as best he could to drain at least some of the poison. I generally didn't ask about Ann unless he volunteered. I knew that our racquetball matches were an escape, that it would be no kindness to return him to the reality he was fleeing, however temporarily. But this particular day he was clearly not himself, his usual buoyancy flown. In the first game the score had been seven to six, but there'd been no trombones. So, halfway through the match, while we rested outside the court, I inquired.

That morning, he confided, before he left for work, he'd noticed that Ann's face didn't look right, something about her cheeks. The woman who looked after her while Lee was at work, who would make breakfast as soon as she arrived, was running a few minutes late. In fact, he heard the woman's car pulling up in the drive as he went over to where Ann stood and asked her to open her mouth, which she did. "She stood there with her mouth full of buttons," he told me, his face a mask of rage and pain. "She'd gotten hungry. My bride."

Ann lived for nine years after she was diagnosed, but after three she was gone, her identity stolen. Only in retrospect would Lee understand how close he came to becoming gone himself.

After that first job as an assistant principal, Lee rose through the ranks of Connecticut administrators. He went back to school part-time and completed his masters in education and served seventeen years in administration before landing his first appointment as a superintendent of schools. By then things had gotten a little easier financially. They'd borrowed money from Ann's parents, other money from the bank, and cashed in a paid-up life insurance policy in order to make a down payment on their first home, a modest cape, and later, as the family grew, moved to a larger house in North Haven.

Once the children were old enough to attend school, Ann returned to part-time work. She organized the distribution of flu vaccines for North Haven, and later worked in a college admissions office. Caring, scrupulously honest, and wonderfully straightforward, she excelled in meeting people and helping them to solve their problems, large and small. But she was always home in time to meet the kids when they returned from school.

Their lives in Connecticut were rich and full, though Lee was beginning to experience the myriad headaches of being a superintendent of schools in Connecticut, whose average professional life expectancy was three years. Each administrator had to answer to and satisfy a school board of eight members who, as Lee put it, usually couldn't agree on a color. His last board in Connecticut was a particularly contentious group. They split right down the middle on every issue put before them, including, finally, whether to renew Lee's contract.

Lee wasn't one to walk away from a fight, but it occurred to him that here was a wonderful opportunity to act unilaterally, something administrators almost never get to do. He resigned and the following year accepted a superintendency in Winslow, Maine, where he would serve for seventeen years until he retired. He and Ann bought a house with several lovely acres of land in rural Vassalboro. They had four children by then. Only Maury, the youngest, was still in high school. Bruce, Kathy, and Suzanne were grown and beginning adult lives and families of their own as far away as California. Lee and Ann had good reason to be proud not just of what they'd done but how they'd done it. And they had every reason to be optimistic about the future, until the afternoon the funny thing happened and Ann couldn't remember how to get home.

Eventually, no matter how much you might wish it otherwise, it all comes down to when. The first when is, When do I need help? and the answer is: Sooner than you think. If you're a man like Lee Duff, optimistic and resourceful by nature and training, and if you've spent most of your adult life problem-solving and believing that problems can be solved, your character strengths now turn on you the way rogue cells turn on the body whose immune system has been compromised.

You think that you can do this job. You think that it's your job to do, not someone else's. You try and you keep trying. Caregivers for people with terminal diseases know that in the end they will lose their loved one. What's not so apparent is that, without proper support, there's a good chance that the caregiver will be lost as well. Each eventually "goes into a hole," is the way Lee puts it. But you don't always recognize where you are.

In a couple of ways Lee was fortunate. He had invested wisely and was earning enough to hire secondary caregivers. Even with all this, the financial strain of a long-term disease can be breathtaking. Without it, you can lose everything. Lee estimates that Anne's care, from beginning to end, cost about a quarter of a million dollars, and that it'd be closer to twice that today. He was also fortunate to have a demanding job that required his full focus. Lee was someone whose competence and vision other people depended upon.

Also, many of the people he worked with understood what he was going through, and that helped enormously. But leaving Ann each morning to go to work made him feel both guilty and ashamed. She didn't understand where he was going or why he had to leave or why she couldn't go with him.

And not all of the people he hired to help out were well-suited to the task. Seeing that their patient was becoming child-like, they tried to engage Ann with games and activities. Eventually, though, Lee found the perfect secondary caregiver, a lovely woman named Desirae who worked for an agency called Helping Hands. She was young and recently married and Ann liked her. When Desirae got pregnant Lee assumed he'd have to start looking again, but when Desirae had her baby, Ann immediately bonded with the child, cuddling her at first, and then, when she started to toddle, following her around the house. Desirae went from part-time to full, and sometimes when Lee arrived home later than expected, the two of them would drop with exhaustion. "I'm thinking of adopting you," he told her.

Difficult though that first when is to gauge, the second is even harder, more soul-destroying. Lee knew that eventually he would have to put Ann in a nursing home. Though she was no longer really Ann, the body that had once housed Ann's mind, her memory, her spirit, soldiered on and would so continue for years. But knowing that something must be done is not the same as knowing when to do it. You discover it's possible to look into nursing homes and to decide, quite rationally, which will be the best "when the time comes," even as you tell yourself that you would never, ever do that. And even as you tell yourself that a nursing home is not an option, you worry there won't be a space when the time comes to do what you've sworn you'd never do. And then, unexpectedly, you do know. When arrives and it trails even more guilt. The only thing that keeps the guilt at bay, at least a little, is your exhaustion. The truest thing you know is that after all these hours and weeks and months and years, you're simply too tired to continue.

In Lee's case the decision of where to place Ann was made a little easier by the fact that her mother was still alive. She called Lee and begged him to put Ann in the home in Houlton. That way she could visit her daughter every day. Ann's mother was in her eighties now, and visiting Ann regularly in Vassalboro was impossible. Naturally, Lee was conflicted. Houlton was a three-hour drive, and if it meant that Ann's mother could visit her daughter more regularly, it also meant that Lee would be able to do so less often. Worse, there were conflicting symbolisms. If Ann went to Houlton, she'd be placed in the very facility where her father had been admitted during the final stages of his own Alzheimer's, a symmetry almost too cruel to contemplate. On the other hand, what geometric shape is more reassuring than a circle? What would be better than for Ann to end her days where she'd begun them? It was Lee's doctor who urged him to consider another possible benefit. Lee himself was spent, well beyond exhaustion. Placing Ann in Houlton might just save his life.

In addition to being blessed with a demanding job and some financial wherewithal, Lee was also blessed in the children he and Ann had raised. When the time came, all four kids returned home to help Lee take their mother north. They took two cars and arrived at the nursing home late in the afternoon. The staff advised them to make as little of the transition as possible, for their own sake, yes, but more importantly Ann's and the family's as well. They would be welcome to visit whenever they wanted, but today they should simply kiss Ann goodbye and leave. For Kathy and Suzanne, that proved impossible. They had to stay with their mother, at least for a while.

What was Lee feeling? An emptiness so profound he wouldn't have believed it possible. Guilt like an anvil. And always, these days, the exhaustion. But also something new, something so foreign, so alien and insidious he didn't immediately recognize it for what it was. Even surrounded by his children, Lee realized that he simply didn't want to live anymore.

Getting behind the wheel for the long drive home, he was again that ten-year-old boy driving a tractor in the dark, assigned a task that was too great for him (he can't reverse it, he can't control it, she's gone). Had he tried? Had he kept trying? At that moment he couldn't have said. All he knew was that he was returning home, the job undone, something his father had told him long ago that you simply did not do.

That was the bottom. It lasted a while but not forever. Despair, like a car thief, had paid him a visit, gained entry, then looked around, glimpsed his host's great reservoir of strength and optimism, and thought to himself, why struggle when the next vehicle was probably unlocked, unprotected, an invitation. This one would be nothing but trouble.

For the next three years Lee visited Ann in Houlton, every other week at first, then once a month. Sometimes one of the kids would go with him, but they all came to the same reluctant understanding—Ann never knew. The visits were known only to the visitors, though, as Lee put it, "She was still there, still mine."

And so it continued until Ann's body finally succumbed, long years after her spirit had fled. Lee and his younger son Maury were there when it happened, saw Ann's features, so long frozen in pain and perplexity, relax in the moment of release, saw the wife and mother they'd known in life returned to them now in death, angelic. The entire family gathered for a memorial service in Houlton, after which Ann's ashes were scattered on Nickerson Lake, a remote and beautiful spot accessible only by boat or on foot, where she'd spent summers as a child. The family has a rustic cottage there, which Lee now tends, spring and fall, one of his myriad responsibilities, at least half of which he's taken on since he retired, since Ann's death.

Perhaps the most important of these new duties is that he's now president of the board of the Hospice Volunteers of Waterville Area (HVWA). Dale Marie Clark, who directs the program and knew both Lee and Ann, recruited him several years ago. He also volunteers with Alzheimer's patients and caregivers. He knows what the latter, especially, are going through.

Part of what makes his story so remarkable, I think, is that at the time he could have used its services, he had no idea that hospice provided such a wide range of them, including Alzheimer's care and counseling. He freely acknowledges how lucky he was to have four loving children, friends, and a demanding job to help him through his and Ann's long ordeal. But he also knows how close he came to losing everything anyway.

What he needed, though he didn't know it at the time, was to talk to someone who'd gone through what he was experiencing, someone who could say, "Here's something that worked for me," or, "Here's something to watch out for." And, perhaps most importantly, "This happened to me too. I didn't think I'd live through it, but here I am."

And Lee is still here. Every now and then we play racquetball, and he still wants me to understand who my ass belongs to (not me). "Trombones!" he announces when he takes the lead at seven to six, and then serves before I'm ready. "People think Hospice is about death," he says, "but they're wrong. It's about life."

Lee is remarried now, to a lovely woman named Barbara, who has a teenage daughter. They are a family. His present happiness is in no way rooted in forgetfulness. Time has afforded him a kind of clarity. He knows now what exhaustion and despair had blinded him to earlier—that he did everything he could, fulfilled every promise, every duty demanded by love and faith. He knows that he couldn't have done anything more without losing himself in the bargain, and knows that neither Ann nor his love and devotion to her demanded that sacrifice.

Still, Ann is never far from his thoughts, nor is the good life they created for themselves and their children. Sometimes he slips up and calls Barbara "Ann," which embarrasses him (who is not embarrassed when the mind plays its small tricks?). Barbara, of course, understands (You know who you are!). They have a full, busy life. At the end of the long interview that was the basis of this story, Lee consulted his watch, saw that we'd run long, and quickly got to his feet. He'd love to give me more time, he said, but he was overdue for one meeting and had another after that. There were problems looming and he wasn't sure he had the solutions. But never mind. He'd try something. If that didn't work, he'd try something else. A man after my own heart.

"You live 'til you die," he reminds me as we shake hands.

And that's how we leave it.

Copyright © 2008 by Richard Russo. Reprinted by permission of Richard Russo and Down East Books.

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