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CHAPTER 1

Introduction

Story has always been a means of learning lessons and, from fairy tales to the Bible, young and old have been able to absorb messages through the use of both the analytical left brain and the imaginative right brain. Palliative care has been called the science of the anecdote, and through sharing these stories I hope readers interested in palliative care, as well as the community at large, will benefit in whatever way is appropriate for them. Some may say after reading these stories that they would have acted differently in the past; some may see events in a new light. Whatever the reaction, I hope the stories will prove to be useful as we all struggle to make sense of our complex existence. The names and circumstances of the people involved have been changed as my intention is to protect those who may choose to see things differently through the lens of memory.

These stories represent my personal reflections and the lessons I have learned from them. They reveal my character and personal journey, for I believe we take ourselves, warts and all, to our work. We cannot give away what we do not have. Therefore, if I am full of doubts and fears, those are probably what I will project. Health professionals frequently project their personal fear of death onto those in their care, just as people with problems of unresolved grief frequently react to their projections.

My Father's Death

When I worked at Mary Potter Hospice in the early years of my palliative care work, I had the desire to assist the nuns with funds to buy more preventative equipment when it came to skin care. Years later, I realized during a course of hypnotherapy that I had not dealt with my own father's death some eighteen years earlier. When my father became a quadriplegic through suffering a spinal injury, I was expecting the birth of my first child, a son, in England, and I was not permitted to fly home. Before my father died a year later, he had developed a bad bedsore and I remember my mother writing to say that she was buying him a sheepskin for protection. I felt very frustrated at not being useful and supportive to my mother. Shortly after his death, my daughter was born in Rochester, New York, where my husband was a postgraduate student. On returning to Australia, I had two more children in a short space of time, and with four young children, and being in a new city, my time was filled for the next few years.

My grief and unresolved emotions surrounding the memory of my father were put on hold. Still on hold, they sought to surface with the image of a dying man with a bedsore at Mary Potter Hospice. Sometimes I think hospice workers are wounded healers struggling with their own insecurities and lack of sound belief systems. Certainly, many admit to the pain of some loss and how the direction of their lives turned to work in this area following an experience of loss and grief. So, for the stories and the insight I have gained into my own and others' emotions, I thank the many people who have been kind enough to share with me the intimacy surrounding an important life event.

My Early Nursing Years

When I was a student nurse in the late 1950s, death was a mysterious and fearful event to be avoided at all cost. Dying patients were given frequent sips of water in the hope of keeping them alive until the next shift of nurses arrived. When death did occur, there was a dread on the part of the nurses of having to "lay the person out." This procedure involved a gown and a mask and a lot of cotton wool to pack orifices with the use of forceps. Strips of old linen were used to tie around the head to keep the jaw closed before the body was dispatched, via a wardsman and special trolley and as quickly and quietly as possible, to the hospital morgue. Death was somehow dirty and something that one didn't get too close to. A phone call was made to the relatives who were generally kept at arms' length and not encouraged to stay beside the dying person. They were not considered an integral part of the care as they now are since the modern hospice movement began in 1967 when Dame Cicely Saunders opened St. Christopher's Hospice in London.

After completing my nursing training at the Princess Alexandra Hospital in Brisbane, I travelled to Canada and worked in an orthopedic ward. I have no recollection of death ever occurring in what seemed to be an exciting new world. Following my Canadian experience I traveled to Edinburgh, Scotland, for midwifery training at the Simpson Memorial Maternity Hospital and experienced the joys and wonders of the birth of new life. The memory of the first birth I attended is still with me as I recall the proud young mother with her newly delivered baby talking to her husband on the bedside phone. I can now see similarities in the experience of a "good birth" and the experience of a "good death." Both are charged with emotion and signify a life change, which will not only entail long and sometimes arduous struggles but also bring rewards.

My career took me to London, where I worked as a private nurse and experienced death again. I was sent by a private nursing agency to nurse a fifty-year-old woman who was dying of breast cancer. This woman was being cared for at home by her only daughter who was in her mid-twenties, which was my age at the time. It was an experience now etched in my mind by its awfulness. I was instructed not to mention the word "cancer" and to express only hope for recovery and confidence in the doctor. Medications were not named or monitored; they were just given in blind faith because the doctor prescribed them. The tension of keeping up this pretense and not knowing what to say of comfort to the daughter and mother who were being parted was great. When the mother did die, the daughter was lost, as her mother had not been allowed to help her with practical instructions for a future without her. My heart went out to a girl of my own age and I accepted her invitation to stay in the apartment with her. Not knowing anything about a normal grief reaction, I seemed to get it all wrong. When I cleaned the walls of the bathroom, it was not appreciated and my actions were taken as a reflection on the inadequacy of the mother. My cooking was wrong; my company was sought but was resented. I left, but the memory stayed stored in me for many years until the death of my own mother at the age of seventy-nine when I was in my early forties.

My Mother's Death

Several weeks before my mother's last Christmas, I was walking by a dress shop when I suddenly thought of her and went into the shop to buy her a dress for Christmas. When I arrived home, she was still on my mind and I decided to place a long distance telephone call to her. No answer. I felt uneasy. I tried to phone my brother who lived in the same country town, but there was no answer. I phoned her doctor, who told me that he had her in hospital for investigations, as she was unable to swallow. I arranged for her to be transferred to a private hospital in another town where the investigations could be completed earlier by a surgeon I knew. Having organized care for my children, I traveled to be with her. What alerted me to her need? I was her only daughter and came along late in life after a stillbirth and two boys. I was much wanted and just a "joy." I was not given a second name.

I have always been an adventurous soul and left home for boarding school on my own request at the age of fourteen. After boarding school I lived in the nurses' home before my adventurous spirit took me overseas to further my nursing career and, as it turned out, to marry. My mother must have missed the daughter of her dreams but she accepted who I was and tried to support me. Looking back, I feel that I could have been more dutiful and attentive, although the boarding school habit of writing home a weekly letter stayed. Somehow, she was prepared to pay the price for my freedom. Now, following surgery, she was diagnosed with secondaries in the liver and an unknown primary tumor. The surgeon broke the bad news gently as he held her hand and told her he was not able to fix the problem. The private hospital staff members were accepting of the fact that their patient's daughter was a nurse who wished to be involved with her mother's care. "My daughter will shower me," my mother told the nurses when I went to the hospital to take her home in the dress I had bought as a Christmas present.

We both knew that time was limited. My previous experiences of death were no preparation, so I trusted intuition and was strengthened by my mother's faith in me. My mother had fought all her life for a balance between active involvement in church and community and depression. As a small child I felt that I had two mothers and often wished with a heavy heart that the good fairies would take my sad mother away and bring back the one who played me to sleep with "Over the Waves" on the organ. Music and painting were a large part of my mother's life. She played the organ for the Methodist community and was proud that one of her paintings had won a prize at the Brisbane Exhibition. When she came home from hospital, she chose to sleep in the front room of her small cream brick house which had, some years before, been purposely built so that my father could live there when he came home from hospital as a quadriplegic after a spinal hemorrhage at the age of sixty-six. My father died in the local town hospital before coming home for his final days could be a reality.

The front room had been kept for visitors but now it was where my mother chose to end her days. Her garden was her pride and joy and she knew all the botanical names of the plants in her care. The day we arrived home and wheeled up the ramp prepared for my father's wheelchair, her gardener came and she could hear the reassuring sound of the lawn mower. I picked flowers from her garden and placed them in her room. The atmosphere was good as neighbors called and well- wishers phoned to receive the news that jaundice was setting in and it was just a matter of time. The local doctor did house visits and was supportive of my wish to keep her at home — at least until she became unconscious. The minister visited and read her familiar Bible passages. Perhaps her biggest comfort was her little tape recorder and the Scottish tapes of empowering songs and hymns which she played, especially in the early hours of the morning when she felt most vulnerable to negative thoughts. One night she dropped her bundle and was bemoaning her worthlessness, and I begged her to stay strong so that I would have happy memories of our last days. She said that she was trying. Now I say to parents who are dying that they are about to give their children a most precious gift: the gift of example and courage. Stories are told about the need for children to release their parents and "letting go" is encouraged. "I'll see you tomorrow, Mum," may mean that Mum will be there because that is what will please her daughter. "Mum, I know that you are having a struggle and although I love you and will miss you, please let go if you are ready," may be an example of how to "let go" is also to love.

My mother and I only had a week together, but each moment was special as I sorted through her belongings, knowing that the time I could spend away from my four children was limited. She told me who was to have her paintings, her dinner set, the electronic organ she took to old folks' homes for sing-alongs, and her clothes. The nursing homes she visited were for other people and, although she was nearly eighty, she had never thought of herself being in one. While sorting through her desk, I came across a letter to Santa Claus that my brother had written and I found letters of utter despair written when my mother lost connection with her God. I filled many garbage bags with what I thought was rubbish and put aside the special requests. I now know that haste in these matters is not a good idea, and I regret so much, having thrown out the sheet music that she had kept from her youth, including my favorite, "Over the Waves."

One brother chided me for having thrown out rags, which would have been useful for cleaning his trucks. It was a time of high emotion when rational decisions were not made. My childhood memories, good and bad, were flooding over me. My relationship with my elderly parents, my father's death — which I discovered later was a matter of unresolved grief — my rebellion against the religion of my parents, and the relationships within my own family were all issues that were surfacing. Through all this were the demands of hosting the visitors, nursing my mother, involving my two brothers in the decision making, providing food, and being concerned with the activities of my own family. I was getting little sleep and hired a night nurse so I could spend a day with my family, who had arrived at the local seaside for a holiday. Before I left, I had my mother's medications and opioid injections organized and documented. I knew nothing in those days about hospice or the principles of palliative care, but I knew I didn't want my mother to suffer. She was worried about her bowels, which to her mind, had to open daily. Even they were organized before I left with the reassurance that I would return in twenty-four hours. When I did, I was greeted by a most unhappy mother, who asked me why I had taken so long. The night nurse had not kept up her regular injections because in her opinion it was too early. "Too early" were words that would ring in my ears years later when I heard the same fear of pain relieving medication being expressed. How can it be too early to be comfortable when one has a terminal illness? How can it be too early for the relief of physical discomforts, which hopefully will make way for retaining control of the mind?

From that moment my mother's condition deteriorated. I could scarcely move her feet to get her back to bed from the commode chair. The district nurses came to help, putting my mother on an alternating pressure mattress and inserting a catheter to avoid the strain and stress of going to the toilet. The doctor asked if I wanted her moved to hospital. In my mother's mind, nursing homes and hospitals were places to visit other people, and I remembered the many months of hospital visits she had made to my father. I felt there was no way I could move her from the security of her own bed, in her own home, and all that was not only familiar to her but her. I could not abandon her to the care of strangers. I wanted no more bad experiences with hired nurses. She was my mother and I was determined to see it through.

My eldest brother came to support me and we were both with her when her breathing stopped. The district nurses had just been there to wash her and sit her up on her pillows. A few minutes after the realization that my mother had died sank in, the nurses appeared again. Something had told them to come back because I needed them. A neighbor appeared and took my brother and me for a cup of tea while the nurses contacted the funeral directors. When I returned, the bed was empty and the bedspread was neatly replaced on the bed. It was as if the event of a few hours earlier had been erased and now numbness set in. Like a robot, I made phone calls and looked forward to a lot of rest and the comfort of my own family. I didn't know anything about grief reactions and it was years later when I began to learn about hospice care that a lot of what I experienced at this time made sense. What I did know was that I had somehow been there when I was needed, as if I had fulfilled a bargain that my mother and I had made when I was given my freedom all those years ago.

In hindsight I realize that survival then took over and the demands of a young family largely put my grief on hold. I took comfort from the number of people who came to the funeral service and from the letters and cards that I received and diligently answered. When my nephew bought the house he needed a shed. This meant that some of the garden had to go. I was sad when I thought of my mother's love and care for her garden. Now I understand the lesson of impermanence. The garden was a part of her life's work which was now ended. It was now time for another to leave an imprint of a different kind.

For many years, moments of sadness would randomly surface. They came on the golf course, they came when I received flowers, they came at my children's end of year school activities, and they came when I wanted to share something special. The feeling I had through all my adventures was that my mother was always there, just like a baby playing peek-a-boo, and that while other people cared for me, no one cared in the same way. A mother's death is tied up with our own sense of beginning and ending, our own sense of love and nurture, our own sense of sacrifice and lifetime commitment. I was a mother of four children and had a strong spirit of independence and survival, yet it was humbling, painful, and very valuable to play a part in supporting my mother at the time of her death. It wasn't at all like the deaths I had experienced as a student nurse, or like the death in London of that other mother who had a daughter my age. It was an honest occasion and I wished more people could have this intimate knowledge of death.

(Continues…)

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Excerpted from "As Good as Goodbyes Get"
by .
Copyright © 2017 Joy Nugent.
Excerpted by permission of Balboa Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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