Final Chapters: A Hospice Social Worker’s Stories of Courage, Heart and Power

By Evelyn Amdur

A Dignity Rises, One Common Hero After Another

Evelyn Amdur, a hospice social worker, began to write these stories midway through her career, collaborating with her daughter, Shelley, a respected teacher of meditation in the Chicago area. Many traditional cultures have a custom of ‘death songs,’ which rest on the idea that at one’s last moment, one somehow sums up the essence of one’s life in a phrase or a song. These are truly American death songs. Unlike the austere poetry of the Japanese, which catch the evanescence of life in an image, both beautiful and stark, or the glorious courage of the warriors of the Great Plains, summing up their lives up in a final burst of ecstatic joy, here in language almost artless, in the simplicity of lives much like our own, a dignity rises, one common hero after another.

Woven into these stories are instructions on how to die well—or at least, as well as we can—not only in what spirit we face death itself, but also through instructions on what is necessary to prepare our families, to ready our estates, and to manage all the players who may be involved in our deaths. Finally, these stories also teach others who hold the same responsibilities that Evelyn herself had, be they social services, medical staff, caregivers or families—how to offer the dying as much grace as she did.

I’ve only met Evelyn Amdur through the pages of this book. She seems like a character from the old days, when people connected personally, with genuine care and love. She knew, intuitively, what others needed to hear, understanding their moral dilemmas. A multi-talented and gifted being, perhaps what stands out most for me was her genius at common sense. Particularly at the end of our lives, she’s what we wish for and rarely receive. This is a book for social workers, to be sure, but beyond that, for all of us. Most of all, it is a message from a remarkable woman on how to face our final days, and also how to care for those who walk that road before us. Ondrea Levine, Author: The Life I Took Birth For

• Language: English
• Publisher: Ellis Amdur
• Release date: Jul 5, 2020
• ISBN: 9781839780783

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Introduction

BY EVELYN AMDUR

When I met Yvette, she was leaning on her walker, her head bowed in pain. She said, This cancer almost gets me down, but when I see the morning light and say my prayers, I know I have another new day. I get up and move to my big window and watch the children playing games and going to school. It’s my pleasure. My daughter wanted me to move in with her, but I like it here, in my home. I make myself happy!

Yvette is an example of the many people it was my privilege to work with during the almost ten years that I was employed as a social worker/counselor by the Visiting Nurse Association of Allegheny County, Pittsburgh Pennsylvania. I worked in the home-care ‘hospice-type’ program, with people who had life-threatening or terminal illness. I met hundreds of men and women who, like Yvette, faced the terror of disease with great courage and spirit.

WHY I GOT INTO HOSPICE WORK

Having cared for my husband through two separate bouts of cancer, one separated from the other by ten years, I learned not only the fragility, but also the toughness of the human spirit—not only that of my husband, but also my own. My naïve faith in how a family functions, especially in times of crisis, was tested continually during my husband’s illness and eventual death.

My children were both in college in other states, with my daughter married to a very difficult man whom she later, thankfully, divorced. I found myself alone to deal with one of life’s hardest trials—the terminal illness of a beloved spouse. At that time, hospice had not yet been started in Pittsburgh. There were very few professional services or volunteer groups available to support me. All the people I knew seemed to be busy with their own lives as I struggled by myself to care for my dying husband.

The lonely experience of coping with my husband’s illness stands in sharp contrast to my parents’ deaths, as my four siblings and I rallied in support. Three years after my husband died, my father contracted pancreatic cancer—the same disease that had killed my husband. When I heard the diagnosis, I had a reactive grief response that made it very difficult to take my turn to help care for him and my disabled mother. Ultimately, my father died before my mother, leaving her behind to die five years after he did.

During my mother’s seventeen years of being a partially paralyzed stroke victim, we adult siblings found ourselves bound in an uncomfortable care-giving role. It seemed endless, as my mother vacillated from recovery of her speech, walking and ability to use her hands, to relapsing into a downward spiral resulting in the mute immobile helplessness of a trapped soul. Our relationships became strained, resentments built and still our duty to our mother bound us together in an uneasy, yet heartfelt obligation. These extremes: emotional isolation when caring for my husband and suffocating emotional entanglements with my siblings, made me committed to find a better way.

About a year after my father died, I found myself in my late fifties, in night school, pursuing a social work degree. When I graduated with my master’s degree in social work at the age of sixty-one, hospice care was just becoming popular in our country. Having suffered and surviving such tremendous losses changed my outlook on life in deep and subtle ways. I found I had the patience and compassion to deal with other people’s suffering, and it seemed natural that I would enter this remarkable new area of social work.

WHAT IS HOSPICE CARE?

Hospice, a philosophy of care rather than a place, teaches new attitudes dealing with the realization and conscious acceptance of death as an integral part of being alive. It treats the dying patient as a person accomplishing an important part of the life cycle. There is usually an understanding that no further aggressive treatment for the person’s disease is possible. The emphasis is on healing the spirit and comfort care, not on cure. Generally speaking, a patient is believed to have six months or less to live to receive hospice services.

There is a closely related field known as palliative care. Here, too, the focus is medical treatment that does not aim to cure disease, but helps the patient manage their symptoms of a disease—often chronic and severe—and the conditions around it. Palliative care is always part of hospice social work. Hospice social workers may also offer palliative care for patients who are not facing imminent death, but are struggling with severe, perhaps incurable illnesses. On the other hand, there are social workers who specialize in palliative care, who do not have the training or professional responsibility to offer hospice social work. I did both kinds of work, and I describe several cases in this book that are palliative care rather than hospice social work. I will not distinguish between cases that were palliative care as opposed to those that were directly hospice care in this book.

Care is provided by an interdisciplinary team of professionals: nurses, social workers, doctors and volunteers, all under a central administration. Their focus is directed at keeping the patient as comfortable and pain-free as possible within his or her home environment, so that he or she can live out their final days with dignity and respect. When medically necessary, the individual is hospitalized until stabilized, and then is returned home. A few patients prefer to spend their very last several days in an in-patient hospice if a bed is available, but these people are in a minority. When I started back in the 1980’s, dedicated in-patient hospice was not available. For this reason, my clients went to nursing homes when it was necessary,

As a hospice social worker, my task was to assist my clients in finding a way to adapt to a life with disease, and in developing solutions to day-to-day problems as they approached the end of their lives. Equally important was to buoy them up when anger flared or bitterness surfaced, and to support them when their spirits flagged. When the opportunity arose, I helped patients and their families search for productive ways of behaving and communicating with each other.

Instead of believing that life was over if it could not be as it had been, most patients did not give up on life. They chose to live in an ‘approximate manner,’ keeping as much of the old as was possible, while letting go of habits and patterns that were no longer necessary to them. Most did not succumb to numbing depression, though many were profoundly sad. Most lived each day fully, instead of dying each day.

Families, although grieving and struggling to keep up with their own daily activities, usually rallied to assist the stricken one emotionally and also ‘hands on.’ They were often willing to begin to think of a time that would not include their loved one. This willingness to plan ahead for the future helped each individual to perceive and fully experience the continuity of their family, beyond the life-and-death of their loved one.

WHY IS THIS WORK SATISFYING?

Most of us are not prepared for the reality of our own death, much less that of one of our loved ones. We are usually too emotionally overwhelmed to think clearly. In the best of families, old grievances may resurface; jealousies and sibling rivalry may reoccur. At a time when tranquility is most needed, hatred and resentment may arise, and fear, even raw terror, may completely overwhelm us. With the presence of a hospice worker, a different atmosphere is made possible.

When a skilled hospice worker meets with a patient who is dying, many old wounds can finally heal, family rifts can be mended and souls can be eased. This is what constitutes a ‘death with dignity.’ Sometimes the person who most clearly benefits from the hospice worker’s presence is not the patient who is dying, but a family member or friend who is a caregiver. Let me share two examples:

One of the goals in rounding out a life is to re-establish family linkages. Family groups are, after all, the basis of society. As an old mother lay dying, she kept repeating, with great sadness, her wish to see her whole family together at least one last time. Her three daughters had been taking turns caring for her, each day for many months. Her four sons, estranged for years, although informed of her pending death, stayed away. The hospice social worker urged the oldest daughter to contact her brothers and persuade them to give one final gift—that of love—to their heartbroken mother: to put aside their grievances, however strongly felt and perhaps justified they might have been. She was successful in persuading three of the four sons to put the past behind them. The last week of their mother’s life, they came every day. They laughed together and cried together; they stroked her hands and kissed her cheeks so that she knew that she was loved. Yes, one son, an alcoholic with many problems, stubbornly stayed away. They were able to mourn his absence and his life of pain, and the mother died, with most of her wish fulfilled.

A second example demonstrates how a care-giver—a son—made his peace with his dying father by taking care of him. In the process, he was able to heal many of the wounds caused by his father’s cold disdain for him while he was growing up. The son was newly divorced and recently laid off in an industry that was downsizing. He was depressed about his own fractured life, but hurried home to help his frail mother care for his father, who was bedridden due to an advanced stage brain tumor.

We never really talked to each other, my father and I. He never asked me what motivated me or what I cared about. I could never ask him, ‘How am I doing, Dad? Do you have any advice for me?’ Now, I clean him, I turn him, and I massage him. Do you think he knows I love him? It’s too late – I’ll never get his blessing.

Through a dialogue with the social worker, he realized that through his care, he was giving to his father what he had never received from him. In doing so, he assumed his place as a man. He found himself enriched not by receiving, but by giving. This gift to his father was a true one, because he offered it with no expectation of reward, simply because it was good to do so.

THE QUESTION OF CULTURE

Cultural issues are much discussed in our society, and particularly so in the field of social services. Can we establish rapport with someone from a background or heritage different from our own? How educated must we be in the customs of someone from another culture to be able to offer them effective help? To what degree should we ‘blend’ with those of another culture, trying to smooth our path by using the same language, meeting them ‘where they are at?’ Should we, instead, hold on to our own values and speak our own language, even though the other person might find this alienating? Rather than a lot of didactic information on this subject here, you will see my answers to these questions woven through the stories.

For example, in Chapter 3, This Place Is My Home, you will see that I had a particular ‘advantage’ in my interactions with Julius. We came from the same culture. I am the daughter of Eastern European Jewish immigrants; he came here at age eleven with the same background. This helped the two of us, no doubt. However, when social workers worry that they will not be able to establish rapport with someone from a different culture, this is merely a way to tie themselves up in knots. There is no doubt that being part of the same culture as your client can possibly be helpful. There is also no doubt that learning about the rules of a particular culture that you are not a part of can be helpful as well. Yet none of us is solely from one culture. Who shares more in common: two young men of different ethnic groups who both listen to the same music and spend their time in the same urban American youth culture, or each of these young men and an older middle-class person from the same ethnic group? The answers to such questions overlap, don’t they? Each of us embodies many cultures—not one.

The reader will find many stories in this book where I share a ‘culture’ with my client, be it the ‘culture of old women,’ ‘the culture of motherhood,’ or the ‘culture of books,’ even though in other respects, our backgrounds were profoundly different, both in heritage and life experience. We certainly should educate ourselves and avail ourselves of experts in our client’s particular culture whenever it is necessary. But at the core, the task of a hospice social worker is to truly meet other unique human beings, face to face, with their flaws, their fears and their courage in the face of death. That is what I have tried to show in the stories in this book.

A BRIEF NOTE ON TERMINOLOGY

We struggled a bit on how best to refer to the people in these stories: ‘patients’ (a medical term) or ‘clients’ (a social services term). This was complex because hospice is an inter-disciplinary effort, concerned with both the medical and social issues relevant to a person facing their last days. Therefore, when I describe a situation that is primarily a social work problem, I refer to my ‘client.’ When the situation is primarily medical, involves medical personnel, or involves the totality of hospice care, I use the term ‘patient.’ Therefore I may alternate these terms even within a single chapter—this will help the reader track when the subject of discussion is my work in particular, or hospice services in total.

WHY I WROTE THESE STORIES

I wrote these stories so that the experiences of these heroic people could touch others. They are intended as examples for people who are moving along the same trajectory; in other words, all of us. In our society, where we do not usually talk deeply about the question of our own and other’s death, these stories serve as a touchstone for many people to recognize their own humanity in the poignant choices we make, not only at the end of our lives, but day by day.

This book is also intended for professionals who are currently active or training to be part of the field of palliative care and hospice. Young people who are training to care for the terminally ill can profit from these narratives and the commentaries that follow, even though they may not yet have personally experienced the death of a loved one, or approached death themselves.

The literature written for helping professionals, such as nurses, doctors, social workers and clergy, is often overly focused on clinical, technical or theoretical issues. Our humanity cries out for simple illustrative examples—stories—instead of heavily footnoted monographs. Our goal is to provide authentic stories, some which should make you think deeply on what your own choices would be in such a situation, to deepen the professional caregiver’s appreciation and respect for human beings in the mortal struggle that we all must ultimately face—that in fact, we are facing right now, at this very moment.

There is a commentary at the end of each chapter, highlighting the social worker’s tasks and interventions most important in each story. However, these are common-sense interactions; they are applicable to any person who is involved in the care of a seriously or terminally ill person. To underscore, this book is written for ordinary people and social workers simultaneously. It is intended to fully serve both.

Each person in this small book is unique. What is universal among them, however, is how each finds the way to embrace and affirm the gift of life with dignity and courage. It is my hope that you, the reader, will find their stories as inspiring as I, the helper, did during the years they welcomed me into their homes and lives.

Finally, I have changed names and reconstructed conversations. The time frame of the social work process within the homes has been considerably condensed. They are not written in chronological order—therefore, I may mention in one story that I am in my seventies, and where in another, I describe myself in my sixties. These are illustrative narratives based on real cases, but they are not documentary. My intent is to celebrate each person’s heroism, holding tightly to life, living onwards until …

Evelyn Amdur, October 28th, 2001

CHAPTER 1

Bernie Is Calling Me

Irina lived in a brick ranch house in one of our blue-collar neighborhoods. It was an area that flourished when the steel mills were running, but now the mills had closed, and the neighborhood was getting run-down. Nonetheless, the trim of Irina’s house was neatly painted and the lawn mowed, so someone was looking after things.

According to the nurse, Irina was at risk of falling because her bathroom was not retrofitted for someone who was ill. There was no railing in the bathtub or by the toilet. With Irina’s increasing infirmity, her nurse was afraid that she could slip and fall and no one would know for days. She asked me to visit to find out what aid we could give her.

When I arrived, I found the front door unlocked, with a little note tacked on it, saying Come in. That alarmed me, since I was not too happy about the safety of the neighborhood. I let myself in, and went to the back of the house, calling Irina’s name. I found her lying on her right side in a big double bed, wearing a comfortable cotton print nightgown. Her once plump face was somewhat gaunt, but still round, with high Slavic cheekbones. She wore her hair, sand-colored and streaked with gray, braided and pinned in a crown on her head.

I introduced myself, then said, Irina, your front door was unlocked. Do you always leave your house unlocked?

Oh, no, she said. Only during the day, because I expect the nurse and maybe one of my friends to come by. She spoke with a rich Polish accent, musical and lush.

This must be a pretty safe neighborhood, I said.

No, not particularly, but walking’s become so painful since my surgery that I avoid it as much as possible. If I don’t have to get up to answer the door, that’s one less strain.

Well, you’re leading right into what I’m here for. Your nurse is worried that you’re having so much difficulty moving about that you could fall down. No one would know because you’re all alone. But not only that, how do you bathe yourself? And what about clean clothes?

She replied, I keep myself clean! I take a sponge bath at the sink every day, and when I need to wash my hair, I use the shower stall in the basement. The nurse brings an aide once a week, and they get me out of bed and put on clean sheets. When I feel up to it, I go downstairs and wash clothes in the machine. I can’t do spring cleaning anymore, she grimaced, "but sometimes I dust a little. I’ve always taken care of myself.

My nurse wanted to send a housekeeper to help me, but I refused. I don’t want a stranger in the house, rustling through my things. You know, I’ve heard sometimes these housekeepers steal from the very people they’re supposed to be helping!

I didn’t have too much to say to that last piece of