My deathbed second thoughts

After my mother's death, I dedicated my life to helping people die on their own terms. Then my father got sick

Published April 22, 2012 4:00PM (EDT)

  (<a href=""> Iwona Grodzka</a> via <a href=''>Shutterstock</a>)
( Iwona Grodzka via Shutterstock)

This article is adapted from the new book "No One Has to Die Alone."

I walk into our kitchen. My mother is standing at the kitchen sink, whistling to the red cardinals in the plumeria tree. As I hurry to slip past her, she turns and looks at me as though her gaze could wrap its arms around me. “I love you so much,” she says softly. I roll my eyes and tsk, responding as an independent 13-year-old striking out to sever the umbilical cord. My mother is cut down to silence.

Without warning, a week later my 8-year-old brother wakes me in the morning saying, “Mommy’s sick, and she’s throwing up.” I respond as I think she would and bring her a tray with cinnamon-sugar toast and orange juice. I tell her I will take my brothers down to the playground so she can sleep. When we return three hours later, her bed is empty. There is a note from a neighbor that she has taken my mother to the hospital. A neighbor comes over to stay with us while our father is with our mother in the hospital long into the night. It is a long, lonely day and night without answers. I write a letter to God trying to describe my confusion and asking God to let her come home.

The next day my grandparents fly in from California to visit their daughter and grandchildren. It feels like a vacuum in the house: the air is still, people move slowly, and no one speaks about what is happening. I am too afraid to ask questions. My father and grandparents go to the hospital and tell us it is better that we wait at home. That evening my grandmother bursts into the living room, hysterical, and I cannot understand what she is saying. My grandfather follows her into the house, comes to me, and holds me. “Your mother took a turn for the worse,” he says gently. At least she’s not dead, I say silently to myself. And then he follows with, “She died tonight.”

My parents had not talked to my two younger brothers and me about the Guillain-Barre syndrome that had already cut short the lives of six out of eight patients diagnosed in our state. We did not understand what the illness was or that it could cause my mother’s death. We did not know about the unpredictable and intractable pain associated with the neurological illness, and why my mother did not get out of bed for days at a time as she used alcohol to cope with her fear and uncertain future. We did not see our mother leave her bed for the hospital, and in an effort to spare us, we were not allowed to visit her. In my mind, she was home one moment and dead the next. No one was home to comfort three young children. I was the oldest, but I did not feel that I had the knowledge or skills to help my younger brothers. No one was there to help me.

In my confused 13-year-old mind, I etched a story that would solidify over the next years, as though carved into rock: I did not tell my mother that I loved her that one day, and she died without me ever telling her that she was loved. As a young girl and for many years afterward, I thought I could have saved my mother’s life if I had not been so selfish, if I had just given her the little affection she wanted. In my limited, self-centered view of the world, I — rather than illness — had caused her death.

No one spoke about her death, what caused it, or how she died. I did not know what caused her to die. Only after her death did I find a newspaper article tucked away in her jewelry case that described the rare diagnosis of Guillain-Barre syndrome. I could not risk asking questions or sharing my pain for fear that exposing my grief would bring a tsunami of pain to my father. I was afraid that the rest of my family might die too, but talking about or showing my grief would mean rocking the boat and risking whatever stability was left in my life. I did not have words for what I was feeling. I had not seen anyone live through grief, and I did not know if I could survive the pain of what I was feeling. I was alone with my grief, and I could not understand how deeply my misinterpretation of her unexpected death would wound me for a long, long time.

I asked to go back to school just three days later, hoping I could hide in the routine of classes and my commitment to good grades. I did not know any others my age who had lost a parent, and I felt humiliated by the looks of pity and the whispers around me. No one knew what to say, and everyone was visibly uncomfortable around me. I was embarrassed, thinking they could see my inner anguish, ashamed that my feelings made me naked. But one classmate wrote me a note, and to this day, I will never forget her courageous act of reaching out and how her simple words — I’m sorry about your mother; you must feel so lost — comforted me in a way my mother would have if she had survived. My young friend risked saying the wrong thing, as we are all afraid we might, in order to acknowledge my new world that I was trying so desperately to navigate.

The greatest act of kindness and compassion would have been for someone to ask me “What do you need to know?” and then encouraged an open, on-going discussion of the facts and my feelings. What happened? When did she die? What caused her death? Who was with her? Was it my fault? I needed information to sort through the reality of her death. I needed someone who could explain what happened so I did not fill in the blanks with my worst fantasies. In the absence of real information, I believed she died alone. I believed I could have stopped it. I believed I was to blame.

I could not be there for my mother, and my grief reflected that regret. I would use the rest of my life to make sure it would not happen again. I would learn everything I could about what a dying person needs; I would be with others as they were dying. I would study everything I could about healthy grief so others would not be alone and confused in their bereavement as I had been. I would learn what I had not known so I could support others.

One of my greatest teachers came in the form of an accident, an experience that changed my assumptions and beliefs. When I was 29 years old, I came to know death from the inside looking out. I had a classic near-death experience during a routine dental procedure. I lost consciousness from a reaction to nitrous oxide while in the dentist’s chair. The incident changed my assumptions about life, death, and consciousness, and it gave me a sense of peace about death and around others who were dying.

My personal experience with death reinforced my conviction to assist others who were dying, companioning them like a midwife. I also believed I could help their loved ones experience a gentler, healthier grief. So I worked in several hospices around the country as we moved frequently for my husband’s job. I sat with over five hundred people as they died, and they told me what mattered to them. In 1994, I formalized my study of death, dying, and grief by returning to a doctoral program and specializing in thanatology, the study of death and dying. I also worked with children in a pediatric AIDS ward who taught me about their lack of fear and acceptance of after-death communication. I spoke at conferences and within university programs trying to dispel the myths and fears of death, and teaching others how to care for the dying and the bereaved.

All of this may sound like noble work, but I now know that it was a self-serving quest. I never again wanted to be unprepared. I wanted to be ready and able to respond during what I knew would eventually come: my father’s death. I wanted to manage my lack of control, to bring comfort to my own discomfort. I never again wanted to feel the regret of not responding or not being able to care for a loved one who was dying.

So in July 2003, when my father told me that he had stage IV lung cancer, I felt ready. I had been preparing for this journey since my mother’s death. The gaping wound of her death had left an ugly scar, so my healing was to learn enough about death and dying so that I could respond and change the experience from a tragedy into an opportunity to serve and love.

I knew I would respond immediately and commit fully to assisting my father. I knew that this was the opportunity for which I had studied and worked my whole life. I canceled the Death & Dying courses I was teaching at the university and closed my private psychotherapy practice. I told my father I would fly to him in Hawaii within days, and I told my husband I would be gone for several months.

Unlike during my mother’s death, I now had a toolkit of skills, competencies, and information. I had my conviction to be present with him, no matter how painful his illness became. I would not let my grief overshadow his needs, but I also would not separate him from the intimacy of my feelings. My promise to both of us was to be his companion so he would not feel alone and dead before his time. I imagined myself the safe haven, the cocoon, where he could go into metamorphosis and emerge into his next adventure.

I went to him with my belief that there is no right way to die; there is only each person’s wish. In death, as in life, each person gets one vote. My guiding principle would be: one life, one death, one vote. I did not have the right to usurp his vote and take away the power of choice about how he lived and how he died. None of us has the right to impose a formula, a prescription, or an agenda for our version of another’s good death. He was fortunate enough to be given some time to plan; he had the lucidity, the resources, and the support to follow through with his wishes. I would help him to be the author of his death, as he had been author of his life.

I began our daily rituals to soothe his discomforts. We reviewed his life in stories and scrapbooks; I asked him about the highlights of his life and what he believed his legacy would be. I asked him what he wanted to do before he died and helped him write his bucket list, planning excursions to complete them. We wrote his obituary and talked about where to spread his ashes. I arranged visits for the friends he wanted to see and served as timekeeper to gently escort them out when I sensed he was tired. Each night I massaged and moisturized his cracked, thin skin. I took him to his doctor’s appointments and asked the questions that he would not because he was of the generation that often defers to medical authorities. I clarified what the doctor said, and I made sure Dad understood. And when the doctor suggested daily chemotherapy, I asked what my father would not: “What might be the pain, and what will he gain?” Dad decided that the discomfort of traveling and the potential side effects were not worth the extra two weeks of living it might afford him. “You can have what you want,” I promised. And so I took him home and arranged for hospice services.

Twelve days after I arrived, he had little appetite but said he wanted Hawaiian food for dinner. He nibbled but was agitated and restless. I gave him some of the morphine that the hospice had left for him, and we went through our routine of lotion and massage, a talk about our day together, and a goodnight kiss. I stayed by his side like a sentry in case he woke disoriented from the medication.

When he woke up the next morning, he grabbed at the oxygen tube running to his nose, connecting life to his shriveling lungs. He pulled the tube out and slid the strap off from around his head.

“Dad, you need the oxygen,” I said. Firmly and succinctly, he responded, “No more.” I checked my understanding and said, “Dad, if you take out the oxygen tubes, you will die soon. Is that what you want?” “No more,” he repeated.

I was sure, because we had spoken directly about his wishes. He did not want to live a life void of adventure and choice. He did not want to be a burden, and he was ready to go. This was the last choice he could make, and my gift was to support him, rather than to challenge him. I was there to be with him as he pushed off on his last voyage.

I put the tube on the floor and turned the oxygen off. I curled up next to him, cradled his head, and spoke softly to him: “I love you. Thank you. I will never forget you.” Softly and gently, and with a lot of space between these truths, I repeated what I needed to send him off with. I sang a favorite Hawaiian song. His eyes were closed. His breathing was slow and shallow for an hour as he lay in my arms. There was a light breeze with the scent of plumeria.

Suddenly, his eyes opened fully. He stared, without blinking, up into the corner of the ceiling. I followed his eyes and heard him whisper, “Duchess,” his nickname for my mother. I whispered back, “Yes. It’s her. Of course she is here. Go to her. We will be okay. You can go now, Dad.” His eyes closed. And within a few minutes, his breathing stopped.

I sobbed and sank down onto his chest. In that moment, I was selfish and wanted him back. In truth, I was thinking only of myself. I had thought I was prepared; I had rehearsed what this moment might be like, but in truth, we are never ready and we always want more time with someone we love. And then in the next moment, I remembered what I had seen and what I knew to be true. I knew where he was; I knew he was whole and healed; I knew he was not alone. I knew, too, that I was not alone. Love trumps death.

Excerpted with permission from "No One Has to Die Alone." Courtesy of Beyond Words, an imprint of Atria Books/Simon & Schuster. 

By Lani Leary

Lani Leary PhD is the author of the international bestselling audiotape "Healing Hands" and served as director of mental health services at Whitman Walker AIDS clinic and as professor of Death Studies at George Mason University.

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