Mary Jo Bennett lives on Hilton Head Island, SC and is available for talks and retreats.

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When Autumn Comes may be purchased at amazon.com,
or special ordered through your local book seller. 

During my childhood I grew up in an apartment building in New York City. Our family lived on the sixth floor and my mother's best friend, Helen, lived on the fifteenth floor. As a young child I remember Helen either coming down to our apartment or my mother and I going up to her apartment a couple of afternoons a week. Helen and my mother would have their cocktails while I either listened to their conversations or watched television. I remember Helen's bright-colored wool suits-the prettiest shades of sherbet pink and robin's egg blue. Helen was my godmother; she was always my ally when life seemed too harsh.

    In my early teenage years, Helen was diagnosed with cancer. At the end of her illness, she remained at home, where her husband and a private nurse cared for her. Every day my mother collected the soiled laundry and returned it the next morning, clean and folded. This was her gift to her dying friend. Helen's passing was the first time I had lost someone close to me and it opened a Pandora's box of ambivalent feelings about death. As I look back, having now become a companion to the dying as a hospice volunteer, I realize that seeing my mother contribute to Helen's care while she was at home at the end of her life planted a significant seed within me.

 

    Ten years ago, life's mysterious passages led me once again into death's den when my close friend and lover died suddenly of AIDS. The trauma that unfolded in those brief two weeks catapulted me into an entirely new life direction. Recently I came across a book that validates precisely what this experience was like for me. Crossings: Everyday People, Unexpected Events, and Life-Affirming Change by Richard Heckler, Ph.D., describes the incredible journey that opens up for us after a catastrophic event. He tells the stories of those who confronted dramatic life-changing events and says that their "desire, to find a context that was big enough to contain their experience, prompted a quest and, unbeknownst to them at first, the beginning of a profound rite of passage."
Sooner or later it happens to all of us. Something or someone comes hurtling through the trance of our everyday lives and startles us...
     What if we consider these events to be signals or messages? What if we attempt to intuit a meaning to the unexpected, or at least acknowledge that something significant has occurred beyond what we ever believed possible? The stories that follow [in Heckler's book] show that when people do so, they cross into a profound and mysterious territory. If they can tolerate the strangeness and inevitable sense of dislocation it engenders, the experience can yield profound treasures-deeper insight, a clearer sense of purpose, and a greater understanding of the world and their place in it (pp. 2, 3-4, 13-14).
    One of the blessings of my passage, as I waded through endless days of grief, salvaging a new life for myself, is that death, dying and grief are no longer vague and dreaded silhouettes that haunt me amidst the churning leaves of autumn. At the time, I had no idea just how many bedsides I would occupy offering my companionship. After this sudden and untimely loss, I felt called to pursue training as a hospice volunteer, not only to find purpose beyond my grief but to serve those in this potent time of life.

 

    A hospice volunteer is a humble creature, having no professional status among hospice colleagues. However, since volunteers are not encumbered by an array of specialized tasks to complete during the course of a visit, perhaps this open-ended identity and flexibility, cou pled with extended time periods spent with the patient, help lay the foundation for companionship. What I have learned over the years in sitting with the dying is that it is never too late to begin a friendship.

 

    The blessings from such a newly formed friendship run both ways. For the person who is dying, it can be especially healing and validating to have a companion with whom there is no previous history or bag gage. The volunteer is able to accept the individual unconditionally, wherever he or she is right now. From this vantage point, the volunteer may be better able to fully attend to the patient and his dying process than family or close friends, whose focus may be divided between the patient's needs and their own issues of grief. Perhaps volun teers provide not only respite for the caregivers but respite for the patient-time away from his inner circle of caregivers, family and friends and the challenging dynamics that can permeate these relation ships.

 

    Of the many books I've read and learned from over the years, Intimate Death by Marie de Hennezel remains one of my favorite. She summarizes beautifully why caring for the dying can be so rewarding and counters the myth that this work is "depressing."
I hope to make some contribution to the evolution of our society: toward one that would teach us to integrate death into life, instead of denying it....
     I hope to be able to open my readers' minds to the rich rewards that come from being there to share the last living moments of someone close to them....
     Even when one enters final helplessness, one can still love and feel loved, and many of the dying, in their last moments, send back a poignant message: Don't pass by life; don't pass by love....
     ...I cannot deny the suffering and sometimes the horror that surround death. I've been witness to limitless solitude; I've felt the pain of being unable to share certain times of distress, because there are levels of despair so deep that they cannot be shared.
     But alongside this suffering, I feel I have been enriched, that I've known moments of incomparable humanity and depth....
     ...Yes, there was sadness, but there was also sweetness and often infinite tenderness....The space-time continuum of death, for those who accept to enter it and see past the horror, is an unforgettable opportunity to experience true intimacy (pp. xiv, 181-82).
    I wrote When Autumn Comes to help hospice volunteers and anyone who attends the dying feel more comfortable and confident in this important and rewarding role. If you are a hospice volunteer, are contemplating becoming one, or simply know someone who is terminally ill, you may find yourself pondering the following questions:

 

    How can I step up to the role of being a companion to a dying per son? How can I overcome my own awkwardness and fears in approach ing someone who is dying? How can I cultivate bonds of trust and intimacy with someone who is preparing for death? How do my beliefs, attitudes, hidden agendas and experiences support or hinder my ability to understand and serve the unique needs of the dying? How can I process and integrate the invaluable lessons about living from individuals who are dying? How do I balance the primary relationship with the person I am visiting with the secondary relationships I have with the caregiver and other family members? How do I reconcile professional boundaries with sometimes strong, personal sentiments toward my patients? And finally, at the end of the day, how does the volunteer or caregiver receive the wisdom and the grace to feel confident that despite any appearances to the contrary, she does make a difference in the living and dying of the people she serves?

 

    When Autumn Comes can help you find meaningful answers to these questions. It is my intention through each of the stories I share to give candid and compassionate perspectives about dying from the point of view of someone who is simply a companion to those in the final days of their lives. We are extremely fortunate to have so much literature emerging on the topic of death and dying. It is rare, however, to stumble upon material that is not written by a professional in the field. Hearing the voice of a layperson as she traverses this terrain can, I believe, help expand our collective awareness of the attitudes, beliefs and issues around death, dying and grief-and help us prepare for and cope with our own inevitable journey.

 

    Ultimately, we will all be called to tend to the needs of a loved one who is dying. We will all grapple with the tremendous impact of this grief and loss in our lives and we will all have the opportunity to offer them the compassionate care they deserve. The word hospice dates back to medieval times, when it described a house or shelter providing rest and nourishment for pilgrims. In serving the dying, we can all learn to be the open door that welcomes, accepts and comforts travelers making their final journey. It is my prayer that my heart's love and compassion will help ease the suffering and rekindle the wisdom of all who read this book.

 

    Note: Some of the stories I relate are based on my personal experiences with friends or family members. In these instances, I have taken greater liberties in my interactions with the patients and families and may have broached topics that would not be within my role as a hospice volunteer.

by Mary Jo Bennett

When Autumn Comes

creating compassionate care for the dying

Ultimately we will all lose someone we love...

When Autumn Comes will help you appreciate and respond to the important needs and delicate issues of our final passage through life. With wisdom and sensitivity, it gives practical keys for creating a holistic, comforting environment for those nearing the end of life so they can face death with peace and dignity.

The author shares her intimate relationship with death in the loss of her lover and close friends and in her many years of experience at the bedside of the dying as a hospice volunteer. Her moving journey through grief, tears and companionship shows how we can find greater compassion and understanding in caring both for the dying and for ourselves in our time of loss.

Read excerpts from the book:
Introduction
Chapter 1
This compelling and candid look at life's final passage explores a broad range of critical issues:

  • Allowing the patient to die on their own terms
  • How active listening can be a tremendous gift to the dying
  • How to create a holistic, comforting environment for those nearing the end of life
  • The role of caregivers and hospice volunteers
  • How does the reader overcome his or her fear in approaching someone who is dying?
  • How do our beliefs and attitudes support or hinder our ability to understand and serve the unique needs of the patient?
  • How to meet the needs of the dying, not our own
  • How to learn lessons about living from those who are dying
  • Dealing with family dynamics
  • Respecting individual coping mechanisms
  • How to seek support for grief and stress
  • In-home care of relatives
  • Drawing healthy boundaries
  • Simple but effective ways to bring consolation and comfort
  • Encouraging the dying to share their memories and bring closure
  • Misconceptions about treating pain
  • After-death care

Losing a Lover and a Friend

    "Have you heard from James?" the voice at the other end of the phone asked desperately. I had just finished preparing the guest rooms and the lay ing out of confections for afternoon tea at the bed and breakfast I was managing in Santa Fe, New Mexico. It was the end of my workday and I was planning to walk out the door to renew my driver's license. I never made that trip.
    James had taken over my previous job as manager at the restaurant where we had both worked and it was Lisa, the owner, at the other end of the phone. During the past two days, she explained hurriedly, James had not shown up for work and he wasn't answering his phone or returning messages. My relationship with James as a workmate, a lover and now a good friend had been as long, winding and unpredictable as a country road. He was my nemesis and my teacher, a sure-fire catalyst for pain, self-con frontation and transformation. Not returning phone calls was par for the course with James, but not showing up for work sent up red flags for both me and Lisa. I assured Lisa I would stop by his house on my way home and call her when I had some news.
    I stood on James' patio outside his apartment for at least 15 minutes, banging away at his door. My knuckles were raw and my heart was pounding as loudly as my knocks. With his car parked right out side and his dog barking away at me, it was obvious James was at home. Why wasn't he answering the door?
    Just as I was contemplating call ing the police, James finally appeared from the bedroom. "God Almighty," I thought to myself, "when was the last time I saw him? Maybe two weeks ago? How could he have turned into this...this walking shadow of death?" Emaciated, pale and struggling to breathe, James slowly opened the door to let me in. "We're going to the hospital right now," I announced, not mincing words. Neither did he. "No," he replied emphatically.
    In between gasps, he told me that a bad cold he had contracted about a month ago had progressed to pneumonia. He took some antibi otics and seemed to recover, but his energy and appetite never bounced back. Within a couple of weeks, he had a relapse. I had seen James twice during this time period. I knew he had been sick, but he never gave me any indication that it was as serious as pneumonia. Since his relapse, James had not sought any medical attention. It became instantly apparent to me that he was just waiting to die and I couldn't grasp why he was not actively seeking help.
    I tried every tactic possible to encourage him to let me take him to the hospital. Finally, I threatened to call the police and an ambulance if he wouldn't come with me willingly. Grudgingly, I struck a bargain with him and he with me. James said he needed some time to clean himself up-to bathe, wash his hair and put on clean clothes. Because of his severe oxygen depletion, all these tasks came with tremendous effort and were painstakingly slow. James agreed to come with me to the hospital if I gave him until the next morning to get ready. It was difficult to leave him alone that evening. Fears and dread kept me from getting any rest. The following morning I called James straight away and, true to his word, he was ready to leave when I arrived. Incredibly relieved, I helped him into my car and we raced off to the emergency room. I had such complete faith that the doctors could make James well again.
    We did not have to wait to be seen by a nurse. Since nobody was mincing words in this drama, the first question out of her mouth was, "Could you possibly have AIDS?" No pretense with an examination, no pleasantries about the weather, she aimed straight for the jugular. I shot back at her like a cannon, "There's no way-James has been celibate for ages." The nurse ignored me and simply turned to James and asked again, "Could you possibly have AIDS?" Weakly, he nodded yes. I had felt tremors the day before when I took my first good look at James, but now the earthquake hit. There would be many more episodes like this, moments in time when reality was so sharp, intense and poignant that I felt either absolutely raw or absolutely numb.
    When I asked the nurse how she figured out he might have AIDS, she said she had seen people come into the hospital over and over again with the same symptoms. They were struggling for oxygen, had pale skin with dark circles under their eyes and had experienced severe and rapid weight loss. Barely hold ing back my inner fury, I wondered why she just didn't come right out with it-James had death stamped all over him. The nurse ushered us into a cubicle to wait for the doctor on call.
    I jumped up onto the examining table and sat right next to James, holding him as he cried. "I'm so sorry," he murmured over and over. "I hope I haven't infected you." He told me that he had probably contracted HIV during his drug-using days, maybe ten years ago. "I never wanted to be tested for HIV," he murmured through the tears, "because I just didn't want to know the results." In the four years I had known James, never had he exhibited any symptoms I would associate with AIDS and yet he seemed as clear about his diagnosis as the ER nurse.
    Dr. Levine, a young physician with kind eyes, suddenly appeared. He had a bit more finesse than the nurse or at least was softer around the edges. Dr. Levine immediately ordered oxygen and once that was in place, James said he felt much better. Then the doctor talked to us about blood tests, x-rays and cultures. He wanted to admit James to the hospital so that they could start him on intravenous anti biotics to treat the pneumonia. In the meantime, we would wait for the tests to come back from the lab to determine whether or not James had AIDS.
    With that taken care of, my nurturing instincts started to kick in. "Feed him, put some weight on him and he'll get better," I thought to myself. I asked James if he was hungry. When he told me a sandwich and some chips sounded good, I said I would run over to the health food store to pick them up. I held him before I left and told him we would beat this "thing" (AIDS?...Death?...What was this silent enemy we were going after?) "We have to have courage and be strong," I whispered, still holding him, "but we can do it." Then I squeezed his hand, slipped down from the table and left.

    As I emerged from the hospital in a daze, I felt totally out of sync with the reality all around me-cars driving alongside me, people shopping casually in the market, the cashier smiling as he rang up my items. "How could they be acting so normal?" I asked myself. In the past 24 hours my entire life had shifted, yet everything around me seemed remarkably untouched and indif ferent. I felt like an alien in this "other" world and I longed to get back to the hospital where the characters, props and scen ery seemed much more compatible with the life-and-death crisis that was my new world.
    We ate our dinner together in his private room. James finished the chips but hardly touched his sandwich. So much for my illusion of nurturing him back to health! Later that evening, a male nurse came to speak to us. Extraordinarily kind, he said he knew that James had just been tentatively diagnosed with AIDS and that we were waiting for the test results. He said he understood how devastat ing this news must be and wondered if we had any questions or wanted to talk. I don't recall that we had any questions for him or had much to say, but I do remember the cour age and compassion of this kind heart reaching out to us in such a personal and caring way.
    He was not afraid to climb down into our dark hole, to acknowl edge the immensity of our pain and to offer us his medical knowledge in answer to our questions. He was authentic and totally present with us. I bless this stranger, this angel-wherever he is now. I hope he realized what a precious gift his presence was to me that evening. When he left, I lay down next to James and cried deeply while he stroked my hair. After all my tears were spent and we were both exhausted, I said good-bye and walked out alone into the night.
    The next morning, I couldn't wait to get back to the hospital. Maybe some news would be waiting for us. While we were waiting, James asked me to do several chores for him since it seemed he might be in the hospital for a while. He also asked me to help him call his family. His parents were divorced and estranged, his mother living in California and his father in Mexico. His sister and half brother lived in Arizona. James was emphatic about not wanting his family to know that he might have AIDS. Instead, he wanted to refer to his illness as some kind of bacterial respiratory infection that the doctors were still trying to diagnose.
    While I disagreed totally with this approach, I told him I would go along with it as long as we could. Soon after speaking with his father, James received a call from a Latino aunt in California. Appar ently his father, alarmed by the news that his son was in the hospital, immediately called James' aunt. Practically crying on the phone, she told James she had had a premonition that death was going to strike someone in her family. Not the best of news on either end.
    My phone call to James' mother was much less dra matic. Although her brother was also very ill right now and she felt torn about leaving him, when I explained that James' situation was serious she said she would get on the first available flight. After making all the phone calls, James and I were exhausted. "It's all going to change now," he told me. We had woven a tight cocoon around ourselves the past few days. Even in the midst of all this fear and uncertainty, we some how felt comforted and safe together. The companionship we had known throughout the years of our friendship took on greater significance. James was warning me that once his family arrived, it would be different for us and, in many ways, much more difficult. He was right.
    James' father arrived later that day. I returned from dinner to see father and son silently watching the television. Neither had much to say as I entered and it was difficult for me to read how it was going between them. When I asked James if he had heard anything yet about his test results, he barely took his eyes off the television. No, no one had said anything to him. I left the room abruptly to track down James' nurse. Surely the results should have been back by now-it had already been 24 hours. My entire world seemed to rest on those results, but still we had no answers. The nurse had nothing definitive to offer. They were aggressively treating the double pneumonia; that was it for now.
    When I returned to James' room to see the same two faces staring vacantly at the television, I lost it. I told them I couldn't believe they were so trans fixed by the television and indifferent to the drama unfold ing right in front of us. In hindsight I realized that they just couldn't cope with the critical nature of James' condition and that watching TV was a safe outlet for distraction and denial. "Are you mad at me?" James asked contritely after I exploded. I quickly apologized for my outburst, telling him how frustrated I felt at being left in limbo.
    James' father pulled me out into the hall and asked me point blank. "What's wrong with James?" I told him what I'm sure James had already explained to him-the story we had agreed on. James had a bacterial respiratory infection and we were waiting for more tests to determine the cause and treatment. All this was true, of course-we just didn't mention the probable diagnosis we were dreading.
    During that night at the hospital, James' oxygen saturation began to drop significantly. Although he was still receiving oxygen around the clock with the nasal tubing, it was not enough. When I arrived the next morning, I found him in intensive care, an oxygen mask over his face. He moved back to a regular room later that day, but the oxygen mask remained his constant companion, keeping him comfortable. The mask prevented James from talking, so a notebook and pen became his sole means of communicating from then on. I never heard his voice again.
    Family members arrived from California and Arizona daily. James' mother, sister and nephew took up residence in a nearby motel. Of all the many relatives that converged at the hos pital during those days, I found the greatest support from being with James' mother and sister. I had met them before this crisis and had established a rapport with each of them. Events like this can often put a terrible strain on relationships, but the three of us somehow held thick and fast.
    A recent set of chest x-rays indicated that the antibiotics were not being effective in containing the infection in James' lungs. A stronger com bination of drugs was ordered. A low t-cell count and a highly elevated white cell count indicated a severely compromised immune sys tem-another strong indication that James was in the midst of a severe outbreak of AIDS. Although we still didn't have his test results back (tests that should have come back in 24 hours), I had been tested for HIV in the meantime and my results were negative. James was immensely relieved. At least one cloud was no longer hanging over us.
    We knew James would need long-term care if he did indeed have AIDS and I wanted to be his primary caregiver when he was released from the hospital. James agreed to my proposal, but first we had to get him out of the hospital and the pneumonia wasn't abat ing. I kept falling back to my original line of defense-nutrition. I encouraged James to eat whatever food he could tolerate. Once he asked me to go back to his apartment and prepare a special for tification drink that he had been relying on lately. He dictated the recipe to me-fruit, soymilk and a powdered supplement. So I started assisting him with his meals, as did members of his family, which helped all of us feel involved. Another night for dinner, James had a craving for a roast beef sandwich from a particular restaurant in town. His father was off in a flash to fulfill this request. James took maybe a couple of bites at the most. I think this probably was his last normal meal.
    Finally, a very long five days after James and I walked into the emergency room, the test results came back. His results were quite different from mine. We quietly revisited the issue of telling his family the whole story. I believed that they had pretty much figured it out already. I urged him to be up front now. Besides, keeping such a time bomb under wraps took considerable energy. I was running out of steam, we were running out of time and he was too ill to keep the charade going. Thankfully, he agreed. With the secret out in the open, I knew I would felt much freer.
    Dr. Levine explained the situation to the family. James' mother and sister did not seem sur prised by the diagnosis, as they were both familiar with James' history of drug use during his youth. But James' father-a proud Latino father and patriarch-did not want to accept this diagnosis or the self-per ceived shame it cast upon his son and his family. Overwhelmed by shock and denial, he assumed that James had not yet been told of his condition because in his culture patients simply would not be given that kind of news. Such an admission, James' father felt, would shatter his son's will to live. It seemed to us that James' father was not dealing with the diagnosis and was pro jecting his need for denial onto James. However, I've learned through subsequent training that individuals or their families deal differently with life-threatening illnesses based on their cultural upbringing and that it is important to be mindful and respectful of these differences when working with patients.
    Dr. Levine, however, held firm that he wanted to be entirely candid with James regarding his diagnosis, treatment protocol and prognosis. James was honestly kept abreast of his condition by the hospital staff, who did as well as they could with what little they knew. I believe that James himself proba bly knew more about his condition than the rest of us since he was the one whose breath was steadily being taken away from him.
    Often when we are in the grip of such raw pain in dealing with the death of a loved one, interpersonal dynamics among friends and family can become strained. Poor communication skills, power struggles and other dysfunctional relationship patterns can be exacerbated during times of crisis. (I have seen this trend in several of the hospice cases I've been involved with and will explore it further in other chapters of this book.)
    Such was the situation between me and James' father-not an easy man to get along with even in the best of times. We seemed to manage together reasonably well at the onset, but as James' condi tioned worsened, all attempts at civility between us collapsed under the stress. One evening when James had sent me to his apartment to run an errand, I arrived only to find out that his key didn't work anymore. James' father had changed the locks without telling either of us. When I confronted him, he said that he didn't want anyone going in and stealing James' belongings. What he was really saying was "I don't want you having access to James' home anymore." This was a big blow to me, compounding my grief and stress.
    The final standoff with James' father came when he took some pho tographs of James that I had hung in the hospital room and which belonged to me. When I asked for them back, he told me he was getting copies made because he had no recent pictures of his son. How ironic that his fear that I would steal something from James' apartment was a pro­jection of his own behavior! The next day, he gave me back only one of the two pictures and told me he was keeping the other one. When I spoke with a good friend about the situation, she advised me to let it go. The man was trying to hold onto his son in any way he could. She also reminded me that my love and connection to James was not dependent on any material item. Of course, she was right. James' father had no control over the disease that was rapidly stealing his eldest son from him, so he was exerting control in any way he could.
    At times I, too, felt utterly powerless. The suddenness and randomness of James' illness seemed to fly in the face of all that was fair and just in the world. I remember one sunny morning, eating breakfast on the res taurant patio where James and I had worked. James did not want to receive any visitors apart from his family, so I had gone there to give his co-workers a status report. As I was waiting for my food and watching the peo ple walk by, I spotted a particularly fit looking man around the same age as James. I was enraged. Why was he out strutting around in his healthy body while James lay emaciated, struggling for every breath?
    To me, this man symbolized many aspects of James that had been lost to his illness. Appalling as it sounds, if I had been a wizard or shaman, I would have cast this illness out of James and sent it into this innocent man. If I had had the power, if I had had any control or say in this situation whatsoever, that's what I would have done. The healthy stranger strolling by epito mized the seeming inequity of this situation and was very hard for me to accept in this stage of my grieving.
    On the other hand, I had a firm conviction that God was with us and that whatever happened to James, it was all in His hands. I believed that events were unfolding according to some bigger picture. Although I might not understand all the whys and wherefores at the moment, I trusted implicitly in God's divine order. Having a spiritual center did not preclude me from having to deal with a full spectrum of emotions, particularly grief and loss, but it did give me tremendous strength.
    At one point, when James seemed defeated and depressed, I asked for a psychiatrist to evaluate his mental state and will to live. If there was to be any chance for James to rally from this infection, he needed to fight. We were all beginning to see someone who was giving up. None of the rest of us could cope with that yet, although, as I would observe in later years, it is actually common to see this type of withdrawal in someone who is approaching death. The psy chiatrist came and visited with James privately for ten minutes or so.
    James had now grown physically and psychologically dependent on the oxygen mask and could only tolerate keeping it off for the briefest of moments. When he was without the mask, he would experience such shortness of breath that it felt as if he were suffocating, which would bring on a panic attack, making breathing even more difficult. Since James could not remove his oxygen mask and therefore was not able to speak, he communicated by writing in his notebook. At the completion of his brief interview, the psychiatrist concluded that James was still able to make coherent decisions on his own behalf. According to the psychiatrist, James wanted to live.
    His family and I felt encouraged by the evaluation, and the same day I saw a definite shift in James' morale. He asked for a newspaper so he could look at rentals. Studying the classifieds had always been a favorite pastime for him so it was extraordinarily encouraging to see James look to the future. We had already discussed my moving in to care for him upon his release from the hospital, so on his own initiative James started looking in the classifieds for larger accommodations than his one-bedroom apartment. Even if James showed interest in the classifieds simply to comfort me and give me something to hope for, this gesture was tentatively creating a future for us and I clung to this future like a lifeline.
    One night I had tried sleeping beside James at the hospital, but it was a disaster. Besides the problem of the cot itself, the constant activ ity, noises, lights and other intrusions made any restful sleep impossi ble. I realized that if I was going to stay sane throughout this ordeal, I had to take reasonable care of myself. Surprisingly, I slept well at home those two weeks. Sleep came as a blessed escape. Still, I often felt torn about leaving James during the night, especially since that was when his crises usually happened.
    I arrived one morning to find him hooked up to a ventilator and back in intensive care. After questioning the nurses and James' father (who had stayed the night and was present during the episode), I learned that he had gone into crisis again during the night-unable to catch his breath, low oxygen saturation and unstable vitals. Apparently James pleaded with them to give him more time to try and calm himself and thereby regulate his breathing. The hospital staff, however, felt the venti lator was necessary to keep him alive. In order for James to remain comfortable and relaxed, it became necessary to establish an IV line for a morphine pump. Both the nurses and physician commented to me that despite his initial resistance to the ventilator, James was working well with the machine. He was not agitated or fighting it, as some patients apparently do.
    Even with more and more props, James' condition was steadily declining. The antibiotics were ineffective. His mother, sister, Lisa and I were beginning to accept the inevitability of his leaving us. James was mostly sleeping now, awake and coher ent only for moments in any given stretch, a common indicator of approaching death. Each of us in turn was telling him that it was okay for him to let go now if that was what he needed to do.
    A wonder ful nurse came in to do some energy work with James-to help his spirit detach from his body, she said. She placed her hands a few inches above him and slowly began to move them from his feet up to the top of his head. I was comforted by her gentle movements, con veying so much tenderness without ever touching his body. I also set up an altar in the room and played some of James' favorite tapes. We tried to keep the room as peaceful and sacred as possible in the middle of an ICU floor. Technicians were still coming in regularly to draw more blood from James for more tests. Thankfully his mother told them that further tests weren't necessary anymore and asked them to stop.
    That afternoon, a social worker called James' father, mother and me into a neighboring empty room in ICU. She said it was easier to talk about these issues before death to help the logistics flow better. She proceeded with the easy questions first. Did we have a funeral home we preferred? No, could she recommend one? Yes, she'd put the name and phone number on James' chart. Next. How did we want his body dis posed? I explained that James' religious faith encouraged cremation between 48 and 72 hours after the death. I was not sure how his father would respond to this information. No objection from either parent. We had a brief discussion about where we would scatter the ashes and we tentatively agreed that we could meet somewhere in the future to carry out this task. With this, the meeting ended. I was extremely grateful for the skill and com passion of the social worker, which enabled us to move through this process unscathed.
    Early that evening, as the nurse was checking in on James, he wrote her a note. "How long?" he scribbled. It was an honest question. How long would his dying process take? The nurse dismissed him and his need for honesty, chiding him not to think like that. "I've never lost a patient yet on my shift," she pronounced. I knew then and there that James would be the first.
    Around eight that evening I was sitting alone with James, transfixed by the machines flashing the numbers of his oxygen saturation and vital signs. The room was dark and silent except for the sounds of the ventilator. All of a sudden, the door flew open and his father led a parade of relatives around James' bed. They called him Jaime and said they were all elated that he had taken a turn for the better. Stunned, I stared again at the flashing numbers. His oxygen level dropped at least ten digits. I was starting to panic, fearing this disturbance was going to push James over the edge. Before I could say anything, his father and family departed as suddenly as they had entered.
    I couldn't understand how they could be telling James he was starting to turn around. Perhaps they were cheering him on in the hopes that he would rally with their support. Extremely disturbed by their actions, I went out to the hall to vent my anger at James' nurse for letting such a big group go into his room. In retrospect, I understand that this was another example of the divergent cultural characteristics and personal needs of James' paternal relatives and me. In the midst of traumatic and stressful circumstances, it is not uncommon to see a clash among family members and friends, especially when different ethnic backgrounds are thrown into the mix.
    I resumed my vigil in a chair at the foot of James' bed, choosing this position so I could see his full face. Suddenly he opened his eyes and with his hand gestured me to his side. Once there, he stroked my cheek with his hand. With this simple gesture, he was saying he loved me. He was saying goodbye. Gently, I took his hand in mine and put it to my lips. As the tears dripped down, I told him I loved him too. When he fell back to sleep, I left to go home.
    During the night, I was awakened by a phone call. I was not startled by this call-I knew it was coming. When I arrived at the hospital, James' mother and sister were already there. All the machines were unplugged and the room was silent. James had died ten minutes ago. The night nurse said he had gone into cardiac arrest as she was cleaning him. She left us alone and closed the door.
    Within moments, James' father arrived and we all stood quietly around his bed. The tubes, IVs and wires had been removed. James' mouth was opened in a circle that had been formed around the ventilator. His eyes were closed. His father stepped back as the rest of us tentatively stroked James' head and arms. Nobody cried. The tears would come later. As I looked down upon his lifeless body, it was apparent to me that James' spirit had already gone. I felt detached and indif ferent to this shell that was left behind. I think this was my ultimate defense against James' death. Death could claim his body, but his soul could not be touched. I found refuge in the idea that he had been liberated from pain and suffering.
    After a while, I dismantled the altar I had set up for him and gathered my belongings as we all prepared to leave. We stood in the corridor for a while talk ing, and as we were walking towards the elevator, a gurney rolled past us with a sheet covering a body. That was James, I thought to myself. It seemed so strange to see him like that. Again I steeled myself against any sentiment or attachment toward his physical body. From now on I had to learn to love and think of him solely on a spiritual dimension. As I was exiting the hospital, just before dawn, I saw a woman and man approaching the entrance. The woman was in labor, about to give birth and I was struck by the never-ending circle of life and death.
    It had been just two weeks since I had received the phone call at work-two weeks of living in some kind of bubble outside of normal, everyday time and reality. The evening I had brought James into the emergency room, I had phoned my employer, explained some of the details of the situa tion and told her I needed to stay with James through this ordeal. Now I couldn't possibly return to work right away. When I told her my latest news, she was thrown off by the fact that she now had to scramble to find some one to cover for me, but it all seemed far away from me. I never gave my job a second thought after that, even though it was something I loved. The bottom had fallen out of my life and only one thing mattered-James.
    James' father, mother and I never did link up to scatter James' ashes. I'm fairly certain James' father had possession of the ashes, but what he ultimately decided to do with them remains a mystery to me. I briefly saw his father several weeks after James died because I had asked him if I could get James' prayer book from him. He showed up one night where I was working to give it to me, along with an enlarged copy of the photograph he had never returned. He never did give me back the original and in the more than ten years that have passed I never heard from him again. In contrast, I have stayed in touch with James' mother, for which I am very grateful.
    Despite the flare-ups that arose among us, I could see that it was tre mendously healing for James to have his family gathered around him. It was an opportunity for all of us to convey to James how much we loved him. In fact, it may have been the first time that James was really able to receive our love. I certainly witnessed a softening in him as he was more willing and open to receive and express affection. The walls came down-walls of shame, secrecy, unworthi ness, isolation.
    In the years following his death, I have sometimes wondered whether it was appropriate that I insisted James go to the emergency room. Certainly, when I found him in his apartment, he knew he was dying. Did I override his wishes to die alone in deference to my own sense of panic and fear? Perhaps. Yet I feel that my intervention provided an opportunity for healing and clo sure for all of us. I also believe that the intimacy we each experienced with James, even in the midst of all the intensive medical procedures to keep him alive, created a comforting environment for James' final passage through life.
    While I certainly struggled with grief and loss during the hospital episode, the real work began following James' death. I knew my time in Santa Fe was over and I needed to do something signifi cant to mark the loss in my life. I wanted to re-create my life from scratch. Although most of the professional literature on the subject advises people who are grieving not to make any radical decisions too quickly after the death, this is precisely what I did. I set in motion plans to sell or give away my furniture and most of my other belongings as I prepared to move to a town in Montana that James and I had vis ited twice before. Prior to James' illness, I applied to take summer courses at a school there, so I thought I might as well make the move permanent.
    I was planning to leave Santa Fe in four weeks and needed to earn enough money to get me through my move. What a blessing it was when Lisa stepped up to the plate, asking me to temporarily manage the new dinner shift at the restaurant. Her offer came with a generous salary and the understanding that I would be with her for only one month.
    Her offer was a godsend in other ways as well. I would be working with James' old crew-the people who had worked with him every day. It was incredibly healing for me to be surrounded and supported by James' co-workers, to be in a place that James had loved and where he had spent so much of his time. In a niche in the dining room wall, we set up a small memorial altar for James with his picture. I will forever be grateful to Lisa for her wisdom and generosity in creating that space and time for me to heal.
    As synchronicity would have it, Dr. Levine came into the res taurant one day. He had no idea that James had worked here or that I was temporarily at the helm. I was so pleased to see him, to be able to thank him personally for all his efforts on James' behalf and to show him the little memorial. He shared with me that James was his first patient ever to die and that his case had impacted him deeply. He said he had pray ed for James with the religious community at his synagogue.
    These were just a few of the many wonderful opportunities given to me in those early days to express my grief, to receive support and to begin the long journey forward into a new life. I felt truly shepherded by James and his angels. I even composed a poem in preparation for leaving the restaurant. On my last day, I read it aloud and gave copies to my friends and fellow employees.

Have you put your arms around us
to hush this shivering grief?
James, look through the window!
Do you see us
huddled around the hearth-our memories of you?
This blazing fire that holds us steady
through these empty, aching days without you.
 
All of us who loved you and are loving you still,
are like brilliant stars of Light.
James, you are our Sun!
You nurture us daily in your radiance-
the golden pure radiance
that beams up our hearts into yours.
 
As we bustle and burst around this restaurant,
do you pose yourself at the counter,
every now and then, and look on?
Are you still thirsty?
Won't you drink from this pool of tears,
that we may all be healed?
 
Can you realize the impact
you made on each of us? And how we still struggle
to be glad for your freedom, while trapped inside our loss?
James, we pray for your peace
and our own absolution from sorrow's stain.
 
It is a hefty mountain we must climb
to meet you beyond the void-
where grief becomes a cloud, thinning into mist,
while melting away...into a joy ful burst of Sun!
The Sun that never left us,
but was only hidden by the cloud.
 
Our beloved James-
We are loving you still.

Embracing a Passion

    Ultimately we will all lose someone we love. Understanding the process and reading a book like this can help immensely. It can help us create a comforting environment for those nearing the end of life so they can face death with greater peace and dignity, and it can help us bring greater care and compassion to ourselves and to others in our time of loss.
    In the years before my final sojourn with James, I had only experienced the loss of Helen. Following her passing, I had devel oped an aversion towards death and kept its shadow safely tucked away. I suspect this is how many of us feel about death-a sense of dread that periodically haunts and immobilizes us. My experience with James changed all that. I learned many important lessons, some of which are summarized at the end of this chapter. More importantly, this epi sode spun me wildly like a dervish until I was re-rooted in a new state, in a new lifestyle (wife and mother), and in a new voca tion-as a hospice volunteer.
    After a summer of attending classes as I had planned, I spent the remainder of that year finding a job and an apartment, establish ing roots in my new community and grieving. It was my nightly ritual to fall into bed exhausted and let the tears flow. I could feel James' presence in the rocking chair across the room. I imagined him silently sit ting there, my companion as I cried. I also had a few vivid dreams (which were more like visions) of James and myself. They were tremendously com forting as they rendered his presence so intensely palpable.
    Very close to the first anniversary of his passing, while I was working at a restaurant, a customer who bore a striking resemblance to James came in for dinner. My eyes were transfixed on this man and I was overwhelmed. As synchronicity would have it, a male friend of mine also walked into the restaurant while this other man was dining. The overlap of their visits remains striking. The friend would later become my husband.
    The following autumn, I participated in a volunteer training sponsored by the local hospice. It had been over a year since James' death. The most difficult work of grieving was behind me and I was eager to glimpse what hospice was all about. At the training, I received an excellent overview of the history of the hospice movement and the two criteria for receiving hospice ser vices: a prognosis by a physician of six months or less life expectancy and the cessation of all curative treatments. We heard from various members of the hospice team-the physician, chaplain, social worker and nurse-as well as several other presentations.
    Ready to sign up, I completed the application form, arranged for my letters of reference to be sent to the hospice director and sched uled my interview. I was disappointed, however, to learn during my interview that the hospice program's patient pool consisted mostly of the elderly and served few if any children or young adults. At the time, I felt strongly that I wanted to work with individuals whose deaths would be considered premature, as James' was, so I decided to pursue my own studies of death and dying until I received a clearer sense of how I could serve in this area.
    Not long after I got married, and within a few months I became pregnant. With this life ripening inside me, I decided to put aside my studies for a time. I needed to be focusing on gesta tion, birth and new life, so I shifted gears and happily slid back to the other end of the continuum.
    When my daughter turned the corner of her first year, I again felt the calling to care for those nearing the end of life. I decided it was time to put my vocation to the test and I contacted hospice, ask ing to be put on the active list for volunteer duty. Soon after, I was assigned my first patient. Since that time, I have again and again visited the corridors of death with an increasing sense of awe and comfort.
    I've heard it said that it's folly to think that one is able to choose a life's vocation. Rather, the secret code of one's calling in this world is embedded deep within the soul. Our life's experi ences, as they grip and mold us, hold the key to decoding this vital information. Taking on the mantle of a vocation is anything but a rational and cognitive process. It is like falling into a well while anxiously awaiting the echo of your soul. It is a surrendering to your passion that sometimes, unbeknownst to you, has been calling out all along. Like peering into a child's kaleidoscope, all the events of your life, when shaken up and twisted around, fall into an amazingly beautiful symmetry-and purpose. Becoming a hospice volunteer evolved into an all-con suming goal for me.
    While sitting with James, when time and senses were oddly warped, I offered the only thing I could find-my silence, tears, love and companionship. In those days, I had no idea just how many bedsides I would occupy, offering the same humble gifts. I have come to realize that offering these gifts is precisely what unites all who care for the dying, be they professionals, volunteers, family or friends.
Keys for Creating Compassionate Care for the Dying

Get involved. Family members and friends often want to assist their loved ones in any way they can. Look for opportunities to participate in the patient's care (for example, in feeding, applying cold compresses, adjusting pillows or keeping the mouth clean and moist with a swab).

A single act of compassion goes a long way. Practicing courage and compassion while identifying and empathizing with the needs of the dying and their loved ones can help bridge the chasm of isolation, fear and pain often felt at the end of life. The single visit from the male nurse during James' first night in the hospital was a huge support to both of us.

Respect individual coping mechanisms. Watching television can be a primary coping mechanism for someone with a terminal illness. As with any coping strategy, it needs to be respected. Don't be offended or suggest turning the television off if the patient continues to watch it during your visit-just hope they are watching a decent program!

Encourage activities. Find out what type of hobbies, books, music and pastimes the patient enjoyed. Engaging someone in a focused game of chess or simply handing them the classifieds can be a welcome distraction.

Have patience with family dynamics. In the dying process, when so much is beyond anyone's control, make allowances for patients and family members who are exhibiting controlling behaviors. Maintaining a compassionate, nonjudgmental perspective will convey unconditional love-a healing balm for all.

Communicate concerns. A volunteer or caregiver who has been seeing a patient over a span of time may witness changes in interpersonal dynamics as various family members come to visit. Keep the care-giving team informed of any concerns about the patient resulting from family tensions.

Get standing palliative orders. Respiratory distress can be one of the most terrifying symptoms a patient will face. All patients with respiratory involvement, such as those with CHF/COPD or cancers involving the lungs, should have standing palliative care orders on file to provide symptom relief should it become necessary.

Be sensitive to cultural differences. Over the past decade much progress has been made regarding how honestly and thoroughly a physician should convey news of a terminal diagnosis to the patient. However, in certain cultures being up front and candid can be perceived adversely. If an oncologist were to practice candidness in conveying the diagnosis of a terminal illness to a Chinese patient, for example, it could be received as a death curse, precluding any chance of hope for treatment and possible remission or cure. Be aware of cultural sensitivities.

Learn to pick up signs and signals. It is not unusual for an individual, in the end-stage of a terminal illness, to have a keen, intuitive awareness of how much time he or she actually has left. A volunteer or caregiver may be able to glean some of this information by staying alert for clues and symbols embedded in conversations with the patient. If a patient is requesting to see or speak with someone today, waiting until tomorrow to call or to arrange the visit may be too late.

Keys for Self-Care

Cook up a storm. Nurturing the patient through food is a common issue for caregivers. If the wife is providing the care, preparing nutritious meals for her husband may have been one of her primary roles throughout their marriage. When she is suddenly no longer required to carry out this function, she may feel guilty and powerless. Therefore, preparing elaborate meals for the patient may be seen as a coping mechanism and is best supported until it becomes a detriment to the patient's comfort and well being.

Ensure good sleep. Overall withdrawal and sustained periods of sleep throughout the day are typically signs of approaching death. As with newborns, patients' internal clocks may become short-circuited, leaving them awake for long stretches during the night. This can be a particularly lonely and frightening time for the dying. Caregivers, worn out from their daytime duties, should not be expected to keep a vigil with their loved ones at night as well-unless, of course, death is clearly imminent. Medications can be prescribed to help ensure a comfortable night's sleep for both the patient and caregiver.

Seek support. Caregivers need a dependable support system. What may look like an unhealthy relationship to you may be a necessary friendship for the caregiver. Don't pass judgment.

Be aware of natural anxieties. The home environment or place where care is being provided can be like an isolated bubble for the caregiver and the patient. Be sensitive to this fact when you are caring for or are around those providing end-of-life care. Their world has shrunk dramatically and they may have little interest or energy for events outside their immediate surroundings and concerns. In some instances, the caregiver and patient may even feel anxious to venture far from home.

Process stress and grief. It is critical that caregivers and volunteers establish viable support systems to alleviate the accumulation of stress and loss in their lives. Even if the patient, caregiver or family members have strong religious or spiritual backgrounds, they will still need to grieve the losses facing them. Faith does not circumvent grief. Always support the patient, loved ones and yourself in expressing grief. Remember that anger, betrayal and a sense of injustice can all be aspects of the grieving process.

Gain closure in your special way. There are many approaches and preferences in how and when people respond to the loved one's body after death. For some, it is important to spend an interval of private, quiet time with the body before it is removed. On occasion, family members may want to bathe and dress the body themselves. Still others may wish to do all of the above in preparation for keeping the body at home for a 48-hour vigil (see keys in Chapter 10). For me, seeing James' body on the gurney sent the final, definitive message-James was dead. Because of the risk factor of contaminated body fluids, his body was never available for viewing, even for the family.

Take advantage of bereavement services. In compliance with Medicare guidelines, hospice agencies offer free bereavement services to the families of patients for one year after the death of the loved one.

When Autumn Comes: Bibliography

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