The Need Not to Die Alone by David Kessler
All the passages below are taken from David Kessler’s book, “The Needs of the Dying”, published in 1997. This is from the 10th Anniversary Edition.
Not Dying Alone
The need not to die alone.
The need to die in peace and dignity.
The need to be treated as a living human being.
One day in the early 1980s I received a frantic call from the manager of an apartment house. “I knew something was wrong,” she said, “I hadn’t seen Richard in days. He didn’t look good last time I saw him. His car was in the garage so he had to be there. I knocked and knocked. Finally I heard a sound and thought I’d better get my master key and go in.” Inside the apartment she found Richard in the bed where he had lain for over four days, unable to get up, unable to even go to the bathroom. He was weak, emaciated, and dehydrated, lying in a wet, soiled bed.
I hurried over to assist, horrified at the site that greeted me. He was so unkempt and dirty I wasn’t even able to tell his age. He could have been twenty-five or sixty years old. Seeing this inhumane sight in a modern-day apartment was surreal. I reached for the phone to summon help, but Richard didn’t want me to. “No, don’t call the paramedics or my doctor or anyone. I am dying and no one can stop that now.”
Richard was right; he was dying. “Let me at least clean you up and make you comfortable.” I said.
He weakly waved me away with his hand. “I have AIDS. You shouldn’t come near me. Just let me die.”
AIDS was still largely unknown in the early 1980s. People were afraid of the disease. I was afraid, too, but I could not let someone die like this. “If I protect myself, will you let me help you?” I asked. Richard agreed. I asked Madge, a middle-aged nurse, to help me. We returned garbed in isolation gowns, gloves, and masks, protected not only against AIDS but also from the fallout from a nuclear explosion.
Within a few hours we had this still weak, thirty-four-year-old man cleaned up and sipping soup in bed. Now there was time to talk. “What happened?” I asked.
“It’s all there,” he answered, pointing to the tape recorder lying next to his bed. “I talked to it. I didn’t have anyone else, so I talked to it. You can listen if you want,” he said quietly. I left Madge to watch Richard and went into the other room, where I anxiously rewound the tape.
I heard Richard describe how he had been admitted to the hospital, how his doctor told him that he had AIDS. There was no cure, the doctor had said. There’s no treatment and he was going to die. His doctor then said he did not want to take care of someone who had “done this to yourself.” While he was in the hospital, he was left all alone. The food trays were set outside the door to his room; no nurses or doctors came to check on him. “If I am going to die alone,” he told his tape recorder, “I would rather be at home.” So he called a friend to pick him up. No one at the hospital tried to stop him; no one warned him about what he would be facing.
The friend was shocked to see how ill Richard was when he came to pick him up from the hospital. On the way home, Richard told his friend that he had AIDS. “I thought he was going to pull over and leave me on the side of the road.” The friend rolled down the windows when he discovered that his passenger had the dreaded disease. He sped up so as to get Richard home and out of his car as soon as possible. “I got home,” Richard continued. “I called another friend, I called my parents. They wanted nothing to do with me. I never felt so alone. I knew then, I would never be hugged or touched again by anyone.”
Fortunately, Madge and I were able to convince Richard that he would not have to be alone. He agreed to a new doctor, to fluids and home nursing. Madge went to his apartment every day to feed him, clean him, change his sheets, and give him pain medications. She also gave him something he desperately needed in his condition: companionship. Richard died just one week later, with Madge holding his hand.
Perhaps the saddest thing we can think of is being alone when we die. Throughout life we desperately want to connect with others–acquaintances, friends, family members, or loved ones. We become sad when those connections are broken by arguments, divorce, or distance. Losing these connections is even sadder when we face death, when our need to be with others who care for us is greater. That’s why not dying alone is a fundamental need.
How We Isolate the Dying
Death is by nature one of the most isolating experiences we can ever have. Unless we die in an accident with others, we die alone, the only one dying at the moment. This aloneness is compounded by the fact that we isolate each other at this crucial time.
We isolate the dying by waiting in the waiting room. We isolate the dying by no longer talking to them and no longer listening to them. Sometimes we’re not with them physically; more often, we’re no longer with them emotionally.
We isolate the dying by no longer talking about what’s going on. The widely held notion that the dying do not want to talk about death is a myth.They do want to talk about what is happening to them. Aileen Getty described how she ran into Timothy Leary several years ago outside the Viper Room, the club where young actor River Phoenix had died of a drug overdose. Aileen and Timothy hadn’t seen each other for some time, so they immediately began catching up. In no time at all they acknowledged that they were both facing terminal illnesses: Aileen had HIV; Timothy had prostate cancer. “We immediately became inseparable,” Aileen said. Her choice of the word “inseparable” was profound, for it indicated how separate from the world these two people were feeling. In a certain sense we will all be alone when we die, for death is, by its nature, an act of separation from people, possessions, and the world. No one can die with you; it’s a solo activity. Those of us who will survive cannot understand what the dying are going through, physically or emotionally.
“Timothy was so grateful that I asked him about his dying,” Aileen told me. “He said he had been waiting for so long to talk honestly about it with someone who would really understand.”
When people talk to those who are diagnosed with a terminal illness, they naturally have difficulty understanding what the other is feeling deep down. But Aileen and Timothy were both living with the knowledge that they would die, possibly soon. They had a level of awareness that they could share, an awareness that you and I simply could not be a part of. I said to Aileen, “I can imagine that someone overhearing your conversation about death and dying would think that it sounded offensive or crazy. I can imagine the person overhearing it would want to rush in and say, `Buck up!’ or
`Don’t give in,’ or `Don’t talk that way!”‘
“Yes,” she replied, “and that’s how they leave us alone. By not being a part of our reality.”
We isolate the dying when we refuse to look at the world as they do. But there’s no reason why we can’t understand that both the living and the dying are in the same boat. The dying may be leaving sooner than the healthy, but it is still the same boat.
Not all communication with the dying need be verbal. Some of the greatest and most profound communication occurs without language. I have been at many bedsides watching two people just looking at each other: one lying in bed and the other sitting nearby, not saying a word, but you could tell that their communication was continuing and intense.
Many years ago, a woman told me how hard it was for her to face the imminent death of her son. It was even more difficult because she couldn’t share her feelings with her husband. “He won’t talk about his feelings,” she said. “Sometimes I feel so isolated. So sometimes I go to my neighbor and I sit and cry with her.” When I asked her what her neighbor says in reply, she said: “My neighbor doesn’t have to say anything; she doesn’t have to ask why I’m crying. She lost her son too. I can just go in and cry. Without either of us saying a word, we know.”
We don’t always have to have exactly the right words to say to our loved ones who are dying. It’s okay just to be with them without saying anything. The point is to be there for them. Our love and understanding will make themselves known.
Dying With Intimacy
Not being alone at death means different things to different people. To gray-haired Miriam, a divorced woman who raised her only child by herself, not dying alone means being cared for by people who are not afraid of you because of your illness.
One evening years ago Miriam sobbed as she told me how she responded when her daughter Gail told her that she had HIV. Sitting at her mother’s kitchen table one afternoon, the usually bubbly and energetic daughter looked tired and haggard. She told her mother that she had been suffering from a long flu-like illness and had been unable to hold much food down for weeks. After more talk, the daughter tonelessly told her mother that she had contracted HIV. Miriam instantly wanted to hug her daughter, to hold her in her arms as she used to, and make everything better again. But she knew that she could not make things better again, for Gail or for herself. Miriam sat quietly, afraid that she would fall apart emotionally if she said or did anything.
And so the two sat at the small kitchen table as Gail recited in a detached, clinical way what she knew of the disease, the medicines, the number of years she likely had left to live, and the pain she feared she would suffer. The first bit of emotion crept into her voice when she described how AIDS can sometimes affect the skin, causing purple lesions. “Soon I’ll be the ugly lesion queen.” The beautiful young woman laughed bitterly.
Unable to hold back any longer, Miriam leaned across the table to her little girl, grown up but still her little baby. But that made Gail only sadder. “Mom,” she said, “now that I’ve got HIV, no one will ever kiss me again. They’re too scared.”
The brave mother immediately pinched Gail’s face together and kissed her. “I’m not scared of you, honey,” she said, crying. “I don’t know what’s going to happen to you, I can’t promise it’ll all be all right. But I’m never going to pull away from you. If you need a hug or a kiss, I’ll give it to you. I gave you your first kiss when you came into this world, and I’ll give you your last when you leave this world.”
We are afraid of intimacy in our daily lives. Imagine how we run from that kind of closeness as someone we love is dying. But when you hold the hand of a dying person, if you really let yourself be close, you experience some of life’s most pure and honest moments. We don’t like to get physically close to the dying, and we usually don’t touch them. But I have seen nothing more heartwarming than a man holding his wife in his arms as she died. There is no safer place to die than in a loved one’s arms.
During another conversation with Aileen Getty, I was struck by her description of death as a team sport. She pointed out that we’re all playing on the same team: We are all born, we all live, and we all die on the team together. The cancer clinics I visited in Tijuana seemed to understand that death is a team sport. They strongly suggested that someone come with you when you checked in, and there was no extra charge for the companion. In fact, they felt that the husband, wife, son, daughter, friend, or whomever you brought along was an integral part of the therapy. But our medical system can be the most isolating in the world. We don’t invite our loved ones in; we restrict their visiting hours. Instead of holding them at bay, we should use their love to help us through our last moments.
Dr. Katz shared with me the story of the thirty-five-year-old man, an obese minister, who came into the emergency room one morning terribly short of breath. Panting, the minister explained, that he had to be “fixed up and out” that same day, because he had to do church the next morning. Thinking that he might have pneumonia or possibly a pulmonary embolism, the doctor performed a thorough examination, initiated treatments, and sent the minister to a nearby department for more tests. While being tested, however, the minister suddenly clutched at his chest and collapsed.
“We were working on him for twenty minutes,” Dr. Katz said. “His family, who had brought him and who had no idea this was happening, were downstairs at the coffee machine. When they came back, we had to tell them that he was dying. Can you imagine their shock? They said they wanted to be there; they wanted to be with him while we were trying to resuscitate him. This was the first time in my career any one had ever asked for this. I brought them in because I realized this was the last time they were going to be with him, alive. They deserved it. I told the nurses to be as calm as possible, and I told the family members what to expect.
“I’ve seen lots of people die; I’ve been through a lot,” the doctor continued, “but I never saw anything that made me cry like this. One of his sisters stood by the bed crying, saying, `Please don’t go; please come back.’ I’ve seen people doing this after death, but when you see it happening while someone is still alive, teetering, it’s amazingly poignant. The family stayed in there until I pronounced him dead.
“It’s amazing we don’t do that more often. People should definitely be able to be present when their loved one dies, for their sake. I usually write an order in the patient’s chart that says family members can be there twenty-four hours a day, for their sake and for the sake of the person dying.”
As Reverend Mark Vierra, a Religious Science minister in Los Angeles, says, “Loving hands greeted us when we entered this world, loving hands will greet us when we leave.”
A deathbed is a very intimate place. We are sometimes not sure whether we should be there, whether our presence would be meaningful or an intrusion. Sometimes the answer may be clear, for we may be the only one there for the dying person. Other times it is not so clear. One day I received a call from Gary. Upset, he told me that his friend from junior high school was dying of a malignant glioma, a type of brain tumor. Gary had already visited him once in Hawaii and didn’t know if he should be with him. He had asked his friend’s wife and parents if he should be there, but they did not give him an answer. They were not sure what he should do. I told him to stop looking for permission from other people and decide if it was right for him to be at his friend’s deathbed.
I wasn’t suggesting that he intrude where he was not welcome, but on the other hand, he shouldn’t look to others to tell him what to do. I reminded him that the wife and parents were wrapped up in grief. And like the rest of us, they were undoubtedly unprepared for the death of their loved one. How could they have answers for him?
Whether you should be at someone’s bedside is a personal matter that only you can settle. The key questions to consider when making your decision are: Have you said everything you needed to say? Do you feel moved to be there? What if he died tomorrow and you weren’t there?
Sometimes, despite our best intentions, our loved ones die alone. They may want it that way. Grace, whose son Jeff was dying, had regrets about not having been there for him in the past. She was determined to be there now. Toward the end, Grace became fixated on being at the bedside at the moment Jeff died. He was glad she was there but often needed more space than Grace gave. He frequently asked her for private time.
One day she announced, “I was there when you came into the world; I will be there when you leave.”
He replied, “Mother, it’s only important that you are here now. My death will happen the way it’s supposed to happen. I don’t want to leave you with any regrets. Maybe I’ll want to die alone. It may feel like a private thing to do. Maybe I’ll just think it will hurt you too much. I won’t know either until I get there. It’s the love that’s ultimately important, not where we are at a certain time.”
Grace heard his words but was still determined to be there. She didn’t leave the house at all during the last few weeks of his life, even though there were nurses and other loved ones present around the clock. As Jeff inched closer to death, she barely left the bedside. The night he died, she stepped away briefly to go to the bathroom. It was in these couple of minutes that he passed away. Grace had to come to terms with the fact that death has a life of its own and comes when it wants to, not when we want it to.
Sometimes we’re supposed to be there, and sometimes we’re not. If you and your loved one feel that you would like to spend this most precious moment together, you can certainly try, but remember that fate has a way of stepping in to make its own decisions.
Project Angel Food is a nonprofit organization in Los Angeles that delivers meals to men, women, and children with life-challenging illnesses. I was a member of the board of directors and later became the organization’s president. Marianne Williamson, the project’s founder, instilled a philosophy that remains alive: “We are not just delivering meals to people with life-challenging illnesses. We are also delivering companionship.” For many of the people we served, knowing that someone was coming to visit that day was as important as the hot meal they received. Many volunteers pushed through their fears to be there for someone else.
People also push through their fears by being with friends and loved ones. Lawrence, the thirty-seven-year-old with Hodgkin’s disease, has been in remission for eleven years, but he has seen death and thought about his own. The process has made him more comfortable with the end of life and taught him the importance of not letting anyone die alone.
“Our instincts are to pull away when someone is sick or dying. I’ve been close to a couple of people who were dying, and I feel it makes a positive difference in the quality of their lives. I’ve noticed with people who are dying that the worst thing is to be alone. It’s inhumane to be alone. It’s better to have people with you laughing and smiling or crying and commiserating until the end. We are screwed up about dying in our culture; we don’t know how to do it. My first time was with my dad, in 1985.
“Dad had lung cancer. It freaked me out. Even though I saw him six hours before he died, I didn’t feel that I was there with him through the process. We didn’t speak about death. He only hedged by saying I should take care of Mom if something happened to him. There was no frankness, no real communication. I was there for him physically but not emotionally, which means that we both missed something important.
“When he died, I refused to go see the body. I was scared; I didn’t want to see him dead. I had just seen him before he died and wanted to live in that moment. I didn’t realize that was my last chance to see him. Now I’m sort of ashamed that I wasn’t there. Even though it would have been difficult, I could have been present.”
It was not surprising that Lawrence was not able to be there as much as he would have liked to for his father. None of us are comfortable while watching our loved ones die. However, once we have gone through the process with a loved one, we feel more comfortable being there than not being there.
As he went through the deaths of several friends, Lawrence learned how “to let death onto my landscape. It’s like a wakeup call telling you to go visit them if they’re sick, be there for them.
“I was only there at the moment of death once, for Bill, someone I knew through AA (Alcoholics Anonymous). His cancer started in the lung, then metastasized into his bones. I was the last person to be with him. That was three years ago. He withdrew a little bit toward the end, then his friends began to visit him. I hadn’t seen him in a while so I called and he said to come the next day. It was his final day. He was mostly unconscious, no longer communicating well, but he recognized me. I felt special that he asked me to come over. He hadn’t showered in a long time; he didn’t look good yet he said, `Yes, come over.’ I felt honored.
“Bill’s death was the most peaceful I’ve seen. He chose where he wanted to die, at a friend’s house in a comfortable bed. He took time in the last few weeks to visit with people. He didn’t pursue things medically; he decided it was time for him to go. He made his decisions about death and kept control of his dying. He created a quiet exit. He remained himself. His friends stayed themselves. He was the same in his last two weeks as he was normally. He had dignity. He died in character. He was fifty-six when he died, the same age as my dad. I grew a lot with Bill’s death.”
With each death we learn how to do it a little better; we become more experienced and comfortable with an experience that is never in itself comforting. We learn that the only thing that can sometimes comfort us or our loved ones is our presence. There are no instructions; it’s a process of trial and error, learning as you go. We have the need not to die alone. It’s much better for the dying and for the living if we do it together. [163-175]