Spine7.061 mm

The Room at the End of the H

allBette Ann M

oskowitz

The Room at the End of the HallAn Ombudsman’s Notebook

Bette Ann Moskowitz

T R A N S G R E S S I O N S - C U L T U R A L S T U D I E S A N D E D U C A T I O N

S e n s e P u b l i s h e r s T C S E 9 2

T R A N S G R E S S I O N S - C U L T U R A L S T U D I E S A N D E D U C A T I O N

The Room at the End of the HallAn Ombudsman’s Notebook

Bette Ann Moskowitz

In this first person narrative, Bette Ann Moskowitz tells what it is like to be a volunteer long-term care ombudsman, and how, with thirty-six hours of training, she entered the unfamiliar world of a nursing home to advocate for its almost-three hundred residents. She brings the reader along as she learns the ropes, makes mistakes and meets tragic and beautiful people struggling for their lives. When she becomes assistant coordinator of the program, she gets an even broader view of institutional life, advocacy, and old age. Problems are big and small: a man discharged for having a sexual relationship with a fellow resident; residents not getting evening snacks; an intelligent resident with mental health problems fighting to be a partner in her own care.

Author of DO I KNOW YOU? A Family’s Journey Through Aging and Alzheimer’s, Moskowitz says advocating for the old and disabled in long-term care can be a transgressive act. “We often oppose the authorities by standing up for the one with two different shoes against the Suits. Sometimes we don’t know enough. We have access, but little power. Yet, an ombudsman may be the only thing standing between the resident and disaster.”

In addition to shedding light on this unheralded and important volunteer health care worker, THE ROOM AT THE END OF THE HALL raises questions about how America and Americans go about the business of old age, and how old age itself is changing as the baby boomer generation enters it.

Bette Ann Moskowitz is a writer, editor and teacher, whose subject is often, but not always, aging.

ISBN 978-94-6209-114-6

The Room at the End of the Hall

TRANSGRESSIONS: CULTURAL STUDIES AND EDUCATION Volume No: 92 Series Editor:Series Editor:Series Editor:Series Editor: Shirley Shirley Shirley Shirley R. R. R. R. SteinbergSteinbergSteinbergSteinberg, University of Calgary, Canada Founding Editor:Founding Editor:Founding Editor:Founding Editor: Joe L. Kincheloe (1950Joe L. Kincheloe (1950Joe L. Kincheloe (1950Joe L. Kincheloe (1950----2008) 2008) 2008) 2008) The Paulo and Nita Freire InternationalThe Paulo and Nita Freire InternationalThe Paulo and Nita Freire InternationalThe Paulo and Nita Freire International Project for Critical PedagogyProject for Critical PedagogyProject for Critical PedagogyProject for Critical Pedagogy Editorial BoardEditorial BoardEditorial BoardEditorial Board Jon Austin, Jon Austin, Jon Austin, Jon Austin, University of Southern Queensland, Australia Norman Denzin,Norman Denzin,Norman Denzin,Norman Denzin, University of Illinois, Champaign-Urbana, USA Rhonda HammerRhonda HammerRhonda HammerRhonda Hammer, University of California Los Angeles, USA Nikos Metallinos,Nikos Metallinos,Nikos Metallinos,Nikos Metallinos, Concordia University, Canada Christine QuailChristine QuailChristine QuailChristine Quail, McMaster University, Canada Ki Wan SungKi Wan SungKi Wan SungKi Wan Sung, Kyung Hee University, Seoul, Korea This book series is dedicated to the radical love and actions of Paulo Freire, Jesus “Pato” Gomez, and Joe L. Kincheloe.

TRANSGRESSIONS: CULTURAL STUDIES AND EDUCATION Cultural studies provides an analytical toolbox for both making sense of educational practice and extending the insights of educational professionals into their labors. In this context Transgressions: Cultural Studies and Education provides a collection of books in the domain that specify this assertion. Crafted for an audience of teachers, teacher educators, scholars and students of cultural studies and others interested in cultural studies and pedagogy, the series documents both the possibilities of and the controversies surrounding the intersection of cultural studies and education. The editors and the authors of this series do not assume that the interaction of cultural studies and education devalues other types of knowledge and analytical forms. Rather the intersection of these knowledge disciplines offers a rejuvenating, optimistic, and positive perspective on education and educational institutions. Some might describe its contribution as democratic, emancipatory, and transformative. The editors and authors maintain that cultural studies helps free educators from sterile, monolithic analyses that have for too long undermined efforts to think of educational practices by providing other words, new languages, and fresh metaphors. Operating in an interdisciplinary cosmos, Transgressions: Cultural Studies and Education is dedicated to exploring the ways cultural studies enhances the study and practice of education. With this in mind the series focuses in a non-exclusive way on popular culture as well as other dimensions of cultural studies including social theory, social justice and positionality, cultural dimensions of technological innovation, new media and media literacy, new forms of oppression emerging in an electronic hyperreality, and postcolonial global concerns. With these concerns in mind cultural studies scholars often argue that the realm of popular culture is the most powerful educational force in contemporary culture. Indeed, in the twenty-first century this pedagogical dynamic is sweeping through the entire world. Educators, they believe, must understand these emerging realities in order to gain an important voice in the pedagogical conversation. Without an understanding of cultural pedagogy's (education that takes place outside of formal schooling) role in the shaping of individual identity--youth identity in particular--the role educators play in the lives of their students will continue to fade. Why do so many of our students feel that life is incomprehensible and devoid of meaning? What does it mean, teachers wonder, when young people are unable to describe their moods, their affective affiliation to the society around them. Meanings provided young people by mainstream institutions often do little to help them deal with their affective complexity, their difficulty negotiating the rift between meaning and affect. School knowledge and educational expectations seem as anachronistic as a ditto machine, not that learning ways of rational thought and making sense of the world are unimportant. But school knowledge and educational expectations often have little to offer students about making sense of the way they feel, the way their affective lives are shaped. In no way do we argue that analysis of the production of youth in an electronic mediated world demands some "touchy-feely" educational superficiality. What is needed in this context is a rigorous analysis of the interrelationship between pedagogy, popular culture, meaning making, and youth subjectivity. In an era marked by youth depression, violence, and suicide such insights become extremely important, even life saving. Pessimism about the future is the common sense of many contemporary youth with its concomitant feeling that no one can make a difference. If affective production can be shaped to reflect these perspectives, then it can be reshaped to lay the groundwork for optimism, passionate commitment, and transformative educational and political activity. In these ways cultural studies adds a dimension to the work of education unfilled by any other sub-discipline. This is what Transgressions: Cultural Studies and Education seeks to produce—literature on these issues that makes a difference. It seeks to publish studies that help those who work with young people, those individuals involved in the disciplines that study children and youth, and young people themselves improve their lives in these bizarre times.

The Room at the End of the Hall: An Ombudsman’s Notebook

Bette Ann Moskowitz

SENSE PUBLISHERS ROTTERDAM / TAIPEI

A C.I.P. record for this book is available from the Library of Congress. ISBN: 978-94-6209-114-6 (paperback) ISBN: 978-94-6209-115-3 (hardback) ISBN: 978-94-6209-116-0 (e-book) Published by: Sense Publishers, P.O. Box 21858, 3001 AW Rotterdam, The Netherlands https://www.sensepublishers.com/ Printed on acid-free paper All Rights Reserved © 2012 Sense Publishers No part of this work may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microfilming, recording or otherwise, without written permission from the publisher, with the exception of any material supplied specifically for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work.

For Long-term care ombudsmen

everywhere

ix

CONTENTS

Acknowledgements .......................................................................................... xi Preface ............................................................................................................. xiii

Part I: Going In ................................................................................................... 1

Part II: Going Under ......................................................................................... 54

Part III: What I Learned about Old Age by Being an Ombudsman ............... 108

xi

ACKNOWLEDGEMENTSACKNOWLEDGEMENTSACKNOWLEDGEMENTSACKNOWLEDGEMENTS

My thanks to Ellie Wakin for a pitch perfect early reading, and for generously sharing her inspiring and arduous caregiver’s life with me. Thanks to Judith Summerfield for her insight, encouragement and effort in behalf of this book. Thanks for sharing knowledge, thoughts, and stories, to: Bill Ackerly, Chris Baltz, Jeanne Bittner, Jerry Brooks, Nancy Cervoni, Shelley Cook, Janis Cooney, Anne DeMuro, Dick Dillon, Jeffrey Falk, Roy Freeman, Carolyn Hazelton, Cheryl Hughes, Linda Joseph, Jack Kahn, Joe Kovacs, Joanne Liguori, Jan Marotta, Joan McQueenie, Mark Milstein, Ellen Ott, Donald Policastro, Kathryn Romaguera, Maureen Space. Janet Van Buren. For steady and wholehearted general support, thanks to Mary Jo DeForest, and to my children, Lynn, Michael, son-in-law Joe, and my grandchildren, Matt, Dan, Nicholas and Jillian. Thanks to Pnina Moed-Kass, friend and colleague, for her loving, relentless determination to keep me going when I hit a wall. Words cannot express my gratitude. And love and thanks first, last and always, to Marvin Moskowitz, my old rock.

xiii

PREFACEPREFACEPREFACEPREFACE

I have been writing about old age since I was young. I wrote a novel about a woman stranded on the threshold of old age with the cards stacked against her. I wrote the true story of my mother as she developed Alzheimer’s. In middle age, I wrote funny essays about the stresses of getting old, long before I got there. Partly, it was a matter of backing into the situation by writing about it first, my version of strewing breadcrumbs (or shelled peas or sour balls) so I could follow my own trail when the time came. I thought the backward glance forward might help me keep it together in dark days, because there was never any doubt in my mind: old age is often a matter of dark days. The question I asked was always the same: when there is nothing and no one and the cards are stacked, what then? Have you ever noticed that everything you read about aging (even that which purports to tackle the hard questions) usually strays back to an easy default which includes reasonable amounts of money, health and family? In fact (and don’t we know it?) lots of people reach old age without one, two or all three of those things. And I want to know what you do then. Here it is in a fictional nutshell: You move to a new place, and in the midst of the move your husband drops dead carrying the LazEBoy into the bedroom, your only kid lives in New Zealand (and is awfully busy, anyway), the company you worked for for fifty years goes broke and your pension is wiped out, and the stress of it all gives you cancer the treatment of which leaves you needing constant care. Where do you go? What do you do? Who is going to be there for you? What then? Into this speculative situation came old age for real, my own, my husband’s, my friends'.. And a real life pickle, in which I moved to a new place, like the “you” in my little fiction, and even though my husband lived on, I felt stranded, more or less, and, not knowing what else to do, I volunteered to become an advocate for people in long-term care, in all sorts of pickles, themselves. And I started taking notes, and here we are. So, this is my story, about my experiences as a long-term care ombudsman, about growing old in America, and about long-term care in the 21st century. In it are the men and women I passed in the halls of the nursing homes and adult homes and assisted living places I visited, whose hands I briefly held, or shook, or touched, whose whispers I took in and passed on, and whose lives I entered and exited at crucial moments. Since being an ombudsman is confidential, I have changed the names of the people I write about. In some cases I have changed their ages, and genders, as well, and in my descriptions I have been careful to preserve privacy. I have taken poetic license with time, by collapsing what was almost ten years into what seems like two. Incidents which might have happened weeks or months apart, happen in one day in this narrative. Nevertheless, everything that I tell you here is true. These things happened. These people are real. Their stories are their stories, and mine, and yours, too, if you intend to get old.

PREFACE

xiv

When I began this book, it was to tell what I saw and heard in those nursing homes and assisted living facilities I visited, and what the unusual and exciting job of long-term care ombudsman was all about, how “ombudsman” answered the question I have been asking from the start: when there is no one else to take care of you, when you are old, or disabled, or both, what happens then? But as I went along, another question began to form in my mind: What would you say if you knew that people in long-term care in our country are protected from abuse, neglect, poor treatment and fraud by this wonderful army of volunteers, but trained, at most, for 36 hours, and sometimes for as little as 12? Is it genius to have devised this program, which costs so little and relies on the kindness and intelligence of strangers? Or is the thrift of the program, in money and manpower, a clue to the limits of our regard for old people in America? The ombudsman program varies from state to state and within each state from county to county, and from ombudsman to ombudsman. This is not a comprehensive survey. It is my story.

1

PART ONE

GOING INGOING INGOING INGOING IN

I am sitting in the parking lot of the Home, a large nursing home in the Hudson Valley, deciding whether or not I will go in. The last time I was there, I was approached by a resident (I want to say “inmate”), who demanded I wheel her to her room. I told her I couldn’t, I was not allowed.

“Brrshcllnkshcchhhh! Caskhsshffffffft!” she said.

“I know,” I said. ”I’m sorry.”

She had that nursing home look, a combination of bed head and bedlam I have come to recognize, which separates the ones who live there from the visitors. I think “us” and “them,” which is accurate, though politically incorrect for the average person to mention, and for me, a long-term care ombudsman, it is heresy, and I am going straight to hell. Now, I watch the shift change. Uniforms in, uniforms out. An ambulette pulls up in front of the entrance, the driver opens the van doors and a man, hands clutching the arms of his wheelchair, is lowered to the curb under the awning. The whine of the chairlift echoes in the parking lot. A jacketless aide rushes out, greets the driver and wheels the man in. The ambulette departs and an ambulance rides silently to the same place at the curb. Someone from inside steps out under the circular awning, shouts to the driver, and goes back in. The driver leaves the ambulance where it is, and he and his partner go in with an empty gurney. They come out with a person (body?) and load it in. I can’t tell if it is a man or woman. It seems important to know. My stomach turns. The ambulance goes away. I am not feeling well. I will come back tomorrow, I decide. I go home.

***

Home is twenty minutes north and I have only called it home for a few years. Before that – real home was a small two bedroom in Queens, New York, where I had lived since I got married, where my job and friends…where my LIFE was. Those walls (which, as a renter I was not supposed to hammer nails into), had absorbed my children’s voices, Sunday football, sudden illness, family secrets, all of it. Those walls were home, not this place, in this countryside, in these woods.

PART I

2

***

“Think of this as your home,” the admissions person at a nursing home says to a new resident, who has just left the place where her life had taken place.

Is she kidding?

Maybe that is what the wheelchair resident’s garbled words had been to me when I refused to push her to her room: Was I kidding? Did she feel lost in the woods?

***

As an ombudsman, I am not allowed to push a resident’s chair, because I am not trained for hands-on care, I am trained to be an advocate. Also, because if she should get her foot caught or something else happens while I am doing it, I would be liable for her injury. So, when someone asks me to push her somewhere in her chair, I have to find a nice way to say sorry, no can do, and then get someone in the Home to do it. Except, often there is no one to do it at that moment and I feel useless.

Maybe the wheelchair resident was saying, “What good are you?”

Or, maybe she was saying, “I want to go home.”

***

There is a saying: One mother can take care of ten children, but ten children can’t take care of one mother, when she gets old. In my life, and in my work as an ombudsman, I have found that this is often true.

How can they?

Why must they?

If they don’t, then what?

My mother lived her final seven years in a nursing home in Long Beach, New York, mostly incoherent, incontinent and occasionally inconsolable, until she died, at the age of 99. She lived there because my sister and I did not want her living with us. We said, “she can’t” and “we can’t,” giving all sorts of sensible reasons, but the fact was, we didn’t want her.

ROOM AT THE END OF THE HALL

3

I had done what I thought was the next best thing: watching over her caretakers, and documenting what I saw of her life in the nursing home; trying, by speaking for her, to safeguard her dignity and preserve her rights. I had mixed success. The documentation eventually became a book, about her, and her nursing home, and everything I had learned about nursing homes and her, and growing old and dying. I thought of it as an explanation and expiation of why I could not take care of her, myself. After she died, I could not turn it off. Because of the book, I was invited to speak as an expert. But it was more than that. I kept thinking about things that had happened, and how I could have stood up for her more, what I could have done differently. Nasty encounters with aides kept me awake at night. Questions about her care flitted through my mind in the middle of my day. I read articles about nursing homes, as if I were still shopping for the perfect place for her. Someone had once thrown one of her dental bridges away, and it had never been replaced. Her smile collapsed and became childish, a little goofy. Should I have tried to get the bridge replaced? Should they have? She had often smelled strongly of urine. Should I have demanded she be changed more often? I had been ashamed of her incontinence, instead. I continued to live my usual life, writing and teaching, seeing friends and family, taking long weekends at our house in the country, and all along, this silent other-life of second-guessing went on. In 1999, my husband retired and we moved to our vacation house in upstate New York. The move shook me. I mean, it broke me. Suddenly, I didn’t know anyone, and no one knew me. All of the self I had added up to -- things I did, what I was -- was gone, as if it had fallen off the moving truck and blown into the woods on the move upstate. I was me-lite, some older woman without a job, a little too friendly to the supermarket checkers, a little desperate for conversation at the bank. The dry cleaner wouldn’t trust me if I were short a dime. Once, I had been a walker in the city, and never much of a driver. Now, whatever I wanted -- dental floss, loaf of bread, ice cream cone -- took a car to reach. And though I drove, I was afraid of getting lost, so I didn’t go far. A low-flying bird slammed into my windshield one day. Neighbors talked about the inevitability of hitting a deer, sooner or later, and I strained and squinted as I drove, to make sure that bush or clump of trees was not a deer about to cross, but often enough it was; their camouflage never gets old, and though I did not hit one, there were close enough calls to make me drive with one foot covering the brake and stepping on and off it constantly. Night was darker. During the day, I walked the hills, nodding at the trees, window shopping leaves and birds as I had once window shopped the shops in my city walks -- until the day I saw a bear in my path.

***

PART I

4

That woman in the wheelchair: who had she been? What had she been? Had she chaired a committee somewhere, or run a beauty salon? Or maybe been an opera singer? Did she feel like she was lost in the woods? Did she know or even feel she was marginal to almost every person who came her way, who wheeled or didn’t wheel her chair? Did her children regret they could not keep her home?

***

So there I was, huddled in a new place, doing a little of this and a little of that while I wondered what I was going to do, until the morning I saw an ad in an AARP bulletin asking for volunteers for the long-term care ombudsman program: “Help advocate for someone in a nursing home.” I was not raised to be charitable. My father walked a thin line between idealism and cynicism; his ideal was a world of give and take, but what he really believed was that takers were selfish, and givers were fools. My mother was less conflicted. She thought if you did something and you didn’t get paid for it, you were a schmuck. Volunteering was what you did when you couldn’t get a paying job. I had never volunteered for anything before, so the idea was a moon shot from my mind. In fact, the phrase “do-good” rang in my ears as a near echo of “dumb goose.” Literacy volunteers were retired teachers who couldn’t give up the ghost, hospital candy-stripers were club ladies playing dress-up, soup kitchen people ladled unwanted pity with the soup. Still, I knew someone who volunteered and grudgingly admired her. And, I remembered, there had been an ombudsman in my mother’s nursing home, and hadn’t I once almost turned to him for help? So, half-convinced and half driven, I took a deep breath, and called the AARP’s listed number. Two weeks later, I was accepted into the ombudsman program, and after a short training period, I was certified as a long-term care ombudsman for the State of New York, and assigned to a large nursing home, which I will call The Home, in my county.

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THE HOMETHE HOMETHE HOMETHE HOME

The Home is a former corporate office building, and it is huge. The lobby still has a businesslike vibe, brisk, and modern, with a circular reception desk in the center, where visitors sign in: Name, Affiliation, Person You Are Visiting. I put down my name, and next to it “Ombudsman,” but I don’t have to write the name of the person I am there to see. That information is confidential. Visitors get temporary tags. I have a permanent one, which I hang around my neck, because I am, theoretically, and by law, always welcome. There are comfortable-but-not-too-comfortable seating areas against the walls, with chairs, a sofa, a coffee table and lamp table in a sort of front parlor, a simulation of home. Beyond the seating, to the right and left, are doors which open onto atria, filled with light. One atrium is an all-purpose meeting room, with a long table, a piano, stacks of chairs ready to be set up along the walls, and huge indoor plants in the corners; the other is an art studio, with easels, projects in various stages of completion, paints and brushes. In that art atrium, the floor is a mess of spatters and colors, and there is a toasty smell which seems to come from paint, or maybe the sunlight baking the easel paper. Both rooms are empty. It is my first day. I am being shown around by the senior ombudsman (a former nurse), and Lisa, a member of the staff who will be my contact person, the one I will go to when I see something wrong, or want to discuss something. We walk down a wide central corridor, which they have named “Main Street.” (More than one nursing home uses this metaphor of small town life, as if that will convince residents that they are home.) There are many wheelchairs. Occasionally someone holding onto a walker wobbles by, alone or accompanied by an aide. Lisa greets every resident who wheels or reels by, by name. On both sides of the corridor are the units, where the people live, and do their activities of daily life; there are also dining rooms, occupational therapy and physical therapy rooms, a coffee shop, a self-service laundry, a “post office” (or mailroom), a bank and a small gift shop, where residents can purchase necessaries. At the end of the central corridor, at the back of the building, there is an outside area with benches and chairs, beyond which is a high fence. We step out there for a moment; even though it is in open air, it stinks of cigarette smoke, as if it is an enclosed room. People sit in their chairs and smoke; some, who are paralyzed, have their cigarettes brought back and forth to their mouths, held in a smokestick, by the hand of an aide. Upstairs, there is a unit for people on ventilators, and a locked unit, for people who have to be contained. I get a little charge of fear. Am I expected to

PART I

6

go into the locked unit? Advocate for people who have to be contained? I am sure I am. Of course I am. The Home is not a typical nursing home, because only some of its almost-three hundred beds are occupied by residents of the traditional (elderly) nursing home type. The rest are people with traumatic brain and spinal cord injuries. The average age in a typical nursing home is about seventy. The average age at the Home is closer to forty. This is clearly not what I have been expecting. The Home has only been in operation for a few years, and it already has a bad reputation. From the beginning it has been in the news, for a variety of not very good reasons, including incidents of physical abuse, residents wandering out the front door, medication errors and overdoses. I cannot imagine what I will do if any of those things happen while I am there. Dee, the county coordinator of the ombudsman program, said she assigned me here because she thought I was tough enough to handle it. (This is the “advantage” of advertising myself as a New York City girl). At the moment I am not sure it is very advantageous. On the other hand, I am so glad it is a straight drive and the shortest distance from home of all the nursing homes, that I don’t care. My training, 36 hours over a period of six days, spread out over three weeks, has left me with a head full of undigested information about long-term care, nursing homes, and the people who live in them. What brings a person into long-term care? (Physical disabilities, Alzheimer’s, the breakdown of their support system.) What happens during the aging process? (Oh, my god, you name it: lost hearing, vision, balance, bone, muscle; even tastebuds die, and let’s hope that all of it doesn’t happen at once, as it seems from the look of that woman, that man.) And now here, at the Home, there is all that and more: here is MS, traumatic brain and spinal cord injuries, people who were fine yesterday, who came to this suddenly, as I could, if I hit a deer on the road. I’m not ready for this. Back downstairs: the light from the atria skylights throws plaid shadows across the floor; I did not notice before, the walls in the lobby and corridor are covered with insider art, thick, bright impasto, splashes of modern drip art made by shaky hands -- with meaning or instinct, or accidental? -- but nonetheless yellow, orange, angry red, beautiful. Lisa says goodbye, leaving me and the senior ombudsman to make our rounds alone. We retrace our steps, this time noticing things I was recently taught to notice. Is a copy of the latest Health Department survey at hand so anyone can pick it up? (They can’t just supply it upon request, it has to be able to be picked up without having to ask for it, and yes, there it is, sitting on the coffee table in the lobby.) Is a “Residents’ Bill of Rights” posted? (What is a right in this place? How will I police it?) Is the big yellow State Ombudsman sign, with the hotline 800 number and my coordinator, Dee’s local number posted on every floor? (I fill in my name next to hers with a magic marker.) Are the hallways well-lighted and the rooms free of hazards, like scatter rugs, or obstructions to the doorways? Does it smell fresh? Are residents dressed and

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7

out of bed? Is the atmosphere pleasant? (What is “pleasant” around here?) Are activities posted? Do the residents look clean and well taken care of? There is a puddle in the hallway. We watch as several people walk toward it, glance down, see it, walk around it, and keep going. I follow the senior ombudsman to the nursing desk nearest the puddle. She politely tells the woman behind the desk it is there. The woman thanks her and says she will take care of it. “Let’s see how long it takes,” the senior ombudsman says, and we hang around until someone comes to wipe it up. Five minutes. “Not bad,” she comments. When the senior ombudsman knocks on a resident’s door before stepping in to talk, she really knocks, with the confidence of someone who has spent years looking in on sick people. I, on the other hand, might as well be using a dog whistle I tap so lightly, hoping that whoever is within will not hear me and tell me to come in. She talks easily and comfortably with residents and staff while I cringe, two steps behind her, trying not to think, “What am I doing here?” and afraid I will say it out loud. During training, I pictured advocacy from my point of view: I saw myself as a kind of (foodless) Michelin inspector with sunglasses and a big hat, snooping around, using my big mouth to argue for the rights of…who? A faded version of my mother, who was not getting her fair share of…what? They were a bit sketchy, while I was pretty clear, being forceful, being effective, even having fun: a little bit commissar, a little bit spy, helping…whomever. Now, walking through this place, I don’t know. This is serious. Here they are, actual people, many of whom cannot walk, or talk, and they might need me. Am I prepared? A woman lies in a coma, her mouth hanging open, and a fly buzzes around her face. Her head looks awkwardly placed, half off the pillow, and her roommate tells us she has been ringing for someone to come and reposition her comatose roommate, but no one has come. The fly lands above the comatose woman’s upper lip and the senior ombudsman shoos it away; it lands again, this time on her cheek, and she shoos it again. We tell them at the nursing desk. In a sunny anteroom surrounding the nursing desk, several men in wheelchairs watch a television set mounted high on the wall. Is this an activity? Is this what they do all day? We stop to talk to an ambulatory but slow-speaking young man who says he is going home. The senior ombudsman tells me later that he has been in the facility for years, following an accident which left him brain injured, and he says this every time she sees him. We visit a resident who has had a stroke. Her husband is sitting next to her bed in the dark room. She is immobile but awake and aware. Her mouth is twisted, and her eyes stare, but the senior ombudsman talks to her as if she were just fine. How are you today? Isn’t it a beautiful, sunny day, and how about let’s open the blinds a little more so the sun can shine in. The woman grunts, the senior ombudsman nods, like she understands what the woman is

PART I

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saying, and then spends a minute fiddling with the blinds. How’s that? No? How’s that? until she is satisfied. The husband says his wife’s physical therapy has been discontinued. She has reached a “plateau,” and the Home cannot continue. Medicare will not reimburse the facility if she does not show a certain amount of progress or improvement. The husband is fighting to reverse this decision and wants the ombudsman’s help, to advocate for his wife. His eyes are red-rimmed. The senior ombudsman says she has already tried. His wife has just not progressed, and if Medicare or Medicaid can’t see measurable progress (so many steps walking unaided this week, so many more steps the week after) they won’t keep paying. And if they don’t keep paying, the facility is not going to provide it. She talks to him about “range of motion,” which consists of gently moving the inert body: arms, legs, wrists, ankles, toes, fingers, just within a proximate range, which will keep his wife’s limbs from total atrophy. I have the feeling she has told him all this before, as well. She promises to talk to someone and make sure that “range of motion” is being done. Her words are “range of motion” but her tone says “bare minimum.” How little she is able to do and how grateful he seems. I think about the empty physical therapy room I just saw, down the hall from the empty art studio, and wonder where their staff is. As we are leaving, we meet Myra, a woman in her fifties, with beautiful long hair and a childlike demeanor, who greets the senior ombudsman with hugs and kisses, and calls her “mom.” Everywhere I go in the facility I see things I do not want to see. Aside from the post-stroke and demented old people, there are residents who are victims of catastrophic conditions unlikely to improve, including MS, birth defects which require a lifetime of care, and all sorts of horrific results of accidents and drug overdoses. If you have ever thought that it is always a good thing to survive a stroke or a car accident, this place will make you think again. If you are insufficiently frightened about the results of drug or alcohol abuse, step into this place for a moment, and you will change your mind. Here, the sheer scope and variety of awful things is huge and includes everything I fear, or have nightmares about, or read about in horrible newspaper accounts, or cannot even imagine. They have all come true for someone, and I do not want to see it. I see a woman without any legs. I see twisted faces. Someone comes staggering toward me, as if he has just enough energy to reach me, and will collapse at my feet. People sit frozen in wheelchairs, and doze and drool. There are people who look angry and mutter to themselves. Someone says something I cannot understand. I am unable to meet anyone’s eye, and unable to look at anyone’s suffering. I am nauseated and a little shaky and after what feels like several hours, I cannot wait to get out. I feel I have been underwater, holding my breath. It has only been forty-five minutes. In the next weeks, I start to go there and then let the car turn me around and bring me back home, or to the farmer’s market down the road from the Home, instead. I call the senior ombudsman with all kinds of excuses for why I suddenly cannot make our visit. Why don’t I quit? Family and friends tell me I

ROOM AT THE END OF THE HALL

9

should. I do not want to. I am embarrassed. I do not want to seem weak or look bad. After all, Dee assigned me to this because she is confident that I can handle it, and so I want to handle it. I went through the training, so how can I throw in the towel before I even begin? And I think most of all I am shocked at myself for being frightened by other people’s suffering. What is there to be afraid of? And with all the suffering going on, how can I make it all about me? But the truth is, it is all about me, and what I fear for myself. I do not want to be reminded of the randomness of life, or how powerless we all are. I would not choose to go into a road where some mad, drunk motorist is set on his drunken trajectory, or into a mall where some crazy teenager has a gun, would I? So why go into this nursing home, where all sorts of “dangers” are present? Do I have to be reminded of my mother, and how she suffered in her last years? What if I am resisting being reminded of my own genes, which might have Alzheimer’s waiting in the wings? It makes sense to avoid volunteering right in the heart of the heart of my fears. On the other hand, isn’t it magical thinking to imagine that I will “catch” Alzheimer’s or spina bifida just by being near it? “Someone’s got to do it,” I tell myself. “It will make me strong. It will make me a better person.” But, whether I am ruled by my better angels, or I am just too embarrassed to quit, I don’t. I push my way through the underwater panic every time I enter the Home, until it becomes a mild feeling of distress that I can wade through. For a while, “swallow, swallow, swallow,” becomes my mantra, as my stomach rises into my mouth. I make the visit to the farmer’s market part of the incentive. “By one o’clock I’ll be sampling cheese,” I think, as I struggle through my visit. And eventually, that passes, too and I begin to be able to concentrate on doing my job.