Few of us are naturally comfortable in the presence of the dying. In fact, most of us are uncomfortable even talking about death. We rarely use the word itself. Instead, we say that someone has “passed on” or “passed over” or “gone to a better place.” People even tend to be uncomfortable in the presence of someone who has just lost a loved one. They invite the recent widow or widower to a dinner party, and then do everything they can to steer the conversation away from the elephant in the room. In A Grief Observed, C.S. Lewis says “An odd byproduct of my loss is that I’m aware of being an embarrassment to everyone I meet. At work, at the club, in the street, I see people, as they approach me, trying to make up their minds whether they’ll ‘say something about it or not. I hate it if they do, and if they don’t...Perhaps the bereaved ought to be isolated in special settlements like lepers.” 1 C.S. Lewis, A Grief Observed. (New York, HarperCollins e-books, 1961), 5-6.
If we are so uncomfortable dealing with death, then how can we learn to help another die? How can we learn to give a person comfort during their last days on earth when we can barely tolerate being in their presence? I have such admiration for hospice workers. They are among the most compassionate and courageous people I have ever met. The ones who are good at their job (i.e. the ones who really do comfort the dying) help their patients retain their dignity and love of life until the very end. They help the patient and their families invite death into the room, thereby minimizing its power to terrorize.
I don’t know what kind of training hospice workers receive. Whatever it is, I think it would be a good thing if the course were made available to everyone. When my late husband suffered a massive heart attack, I took a course in CPR (Coronary Pulmonary Resuscitation) at the local YMCA. They taught me how to keep him alive if he had another heart attack. I put that skill to use in a restaurant in Maryland one night when Bill and I were out to dinner with a client. He survived that attack and lived another four years. Those years were difficult on both of us. His mobility was severely limited. He knew that he could have another attack and die at any moment. Unfortunately, I had never taken a course on how to help someone die.
Three months before that final attack actually happened, Bill began playing a song on his ukulele. While he sang, he looked directly into my eyes as though to say, "I am trying to tell you something, my love." I asked him to stop. He said, "You know, I will die before you do… I would really like to play this song."
Looking at his wan face, and holding his colder-than-normal hand, I thought about the song’s lyrics: they were all about love’s joy and its impermanence. I repeated, "Please, don't play that song. It really hurts me to hear it. I can't imagine living without you. To lose you would be to lose half of myself. I feel so much love for you that I doubt I could ever love another man because the feelings would never be as full as are my feelings for you."
His answer had been unromantic, but terribly pragmatic and honest. "That does not make me feel good at all. You have to leave me with the choice of life and death. I do not want to be responsible for your life. I want to choose to remain with you, not to feel that I must. Musts do not feel good. They are a burden, not a joy. Please don't talk that way. Love me, and need me, but not to the point that you tell me you wouldn't survive without me. That is not a sign of your love, and, furthermore, I don't even believe you. So shut up and let me play my song."
I walked out of the room. I never gave Bill a chance to play that song. Nor did I give him a chance to talk about dying. He tried to bring up the subject, but I always avoided it. At the age of thirty-four, I didn’t understand how important that was to both the dying and those who would be left behind. Now, almost forty years later I know better. Time and loss have been effective teachers. My friend, Katherine, was particularly helpful. The way she died taught me how to help others spend their final days on earth.
It all began shortly after I returned home from spending two months in Western Australia where I had gone because my mother was dying. I got back at the end of October. Weeks later, Katherine was hospitalized with a strange set of symptoms. The doctors finally determined that she had contracted PML, Progressive Multifocal Leukoencephalopathy. Six months earlier, she had endured a round of chemotherapy to deal with a lymphoma that had recurred. The chemotherapy had compromised her immune system. As a result, the JVC virus that resides but remains inactive in many of our kidneys had been unleashed and had managed to break through the barrier to Katherine’s brain. There, it attacked the cells responsible for producing myelin, a fatty substance that protects the nerves of the brain. The loss of myelin was accompanied by the rapid deterioration of brain function. There is no known cure for PML. Suggesting that it was time for Katherine to go home and think about her legacy, the doctors released her a few days before Thanksgiving.
On Thanksgiving Day, my husband and I joined their family for drinks before dinner. That night, I experienced the quintessential Katherine: the sage Katherine who was courageous enough to confront death head on, and yet able to celebrate life to the very last moment. She asked her newly hired caregiver to help her maneuver over to the couch where I was siting. She put her hand on mind and whispered into my ear, ““I always knew I was going to get old, but I never thought it would happen so fast.” I looked at her. She was smiling. She knew she was dying, and yet she was smiling.
Three days later, Katherine’s husband invited us over for drinks and dinner. He explained that even though she couldn’t join us, the dinner had been Katherine’s idea. Several months ago she had made and frozen a lamb stew. She wanted us to enjoy it.
We found her sitting like a regal queen in her four poster bed draped with colorful silks and satins. She was watching ABC World News Charles Gibson was summarizing the events of the day. “In Paris, diplomats from the five UN Security Council states, and Germany, have failed to reach an accord on Iran sanctions. Today in Thailand, the last remaining bodies of people who died in the tsunami two years ago were buried.”
Katherine reached over, picked up the remote and turned down the sound. She patted the bed next to her, indicating that she wanted me to sit down. Taking my hand in hers, she attempted to smile. Her eyes complied, but her mouth refused. Her brain would no longer tell the left side of her mouth to lift
“Would you like a drink, Dear?” Thomas asked.
Katherine nodded and again attempted to smile. Thomas stood and picked up on of the sticks with a sponge that were in a box on the bedside table. He put it in his vodka martini and stirred it around, and then brought the wet sponge to Katherine’s waiting mouth. “Cheers,” she said as she struggled to raise herself to a full sitting position. Thomas put another pillow behind her back and then sat down again.
“We saw the doctor yesterday,” Thomas said, picking up where we had left off in the kitchen.
“Two to twenty-four months,” Katherine said in a voice that was surprisingly clear and strong.
‘No, Dear,” Thomas corrected her. “Two to four months.”
“Two to four months,” Katherine repeated in a quiet voice. “That’s not very long, is it?”
Katherine was not denying that she was dying. In spite of the deterioration of her brain, she was processing it. At the same time, she refused to fall prey to melancholia or to think of her self as a victim. That made it a lot easier to be with her and to talk with her about death and dying. She also made it easier by staying interested and involved in life. An interior designer and artist, she had amassed a significant portfolio. Before her diagnosis, she had booked a gallery and scheduled an exhibition for the last weekend in January. Now, she was adamant that it take place, even though she realized she would probably be dead before it happened.
In between our conversations about death, we talked about art. My husband made a cd of her paintings and spent hours looking at them with her on our laptop. She talked about how in another life she would have liked to be the artist Frankenthaler. We studied the artist’s life, and fantasized how it would have been had that been Katherine’s life.
Katherine talked about life and death as though they were inextricably entwined, and part of the same glorious story. And, she never lost her sense of humor, and her ability to see the irony in situations. One evening when we went to visit, Katherine confided in me. “They tell me to eat and give me something to help me shit, but they don’t give me any place to shit. Shit in your pants, they say.” Then she laughed at the absurdity of it all.
On December 12, Katherine herself decided to initiate Hospice care. Because she had lost the ability to sit up, she agreed to have a hospital bed installed in her bedroom. Regardless, she continued to find the energy to host an endless stream of friends and family members. She spoke honestly about dying, and yet she remained curious about the lives of others. At her memorial service, a young man stood up and said, “When she lay dying, and should have been totally preoccupied with the finality of it all, she was still interested in hearing about my life, and how it was going.”
The last time we saw Katherine was the night of the Winter Solstice; the night before we had to leave for our daughter’s home in Boise, Idaho. That night, we took seats next to Katherine’s bed. For several minutes, Katherine seemed unaware of our presence. She continued to stare blankly at the flickering images of the news broadcast on the muted television set. I reached over and took her right hand. Finally, she turned her head, and tried to smile.
She mumbled something that I couldn’t understand. I lowered my head and asked her what she had said. Moments later she raised her right arm and began moving her limp hand in a circle. “Life is change, always changing,” she said. This time, I understood her. In these words, Katherine captured the sense of impermanence and detachment that is at the heart of the Buddhist philosophy. She seemed able to accept death. She was calm that night, even peaceful in her being. Even the persistent indignities of impending physical death did not seem to disturb her.
When we left that night, we knew we would never see Katherine again. Yet we left with peace as well as sadness in our hearts. In accepting her own death, Katherine had helped us accept it as well. She died the morning of December 28. On the blog he had created and maintained since his mother entered the hospital, her son wrote, “Mom peacefully passed away at home this morning. The sun brightly shone on all of nature's splendor...a good day to die.”
I hope that, as a result of Katherine’s example, I am now better prepared to help the people I love find “a good day to die.”
If we are so uncomfortable dealing with death, then how can we learn to help another die? How can we learn to give a person comfort during their last days on earth when we can barely tolerate being in their presence? I have such admiration for hospice workers. They are among the most compassionate and courageous people I have ever met. The ones who are good at their job (i.e. the ones who really do comfort the dying) help their patients retain their dignity and love of life until the very end. They help the patient and their families invite death into the room, thereby minimizing its power to terrorize.
I don’t know what kind of training hospice workers receive. Whatever it is, I think it would be a good thing if the course were made available to everyone. When my late husband suffered a massive heart attack, I took a course in CPR (Coronary Pulmonary Resuscitation) at the local YMCA. They taught me how to keep him alive if he had another heart attack. I put that skill to use in a restaurant in Maryland one night when Bill and I were out to dinner with a client. He survived that attack and lived another four years. Those years were difficult on both of us. His mobility was severely limited. He knew that he could have another attack and die at any moment. Unfortunately, I had never taken a course on how to help someone die.
Three months before that final attack actually happened, Bill began playing a song on his ukulele. While he sang, he looked directly into my eyes as though to say, "I am trying to tell you something, my love." I asked him to stop. He said, "You know, I will die before you do… I would really like to play this song."
Looking at his wan face, and holding his colder-than-normal hand, I thought about the song’s lyrics: they were all about love’s joy and its impermanence. I repeated, "Please, don't play that song. It really hurts me to hear it. I can't imagine living without you. To lose you would be to lose half of myself. I feel so much love for you that I doubt I could ever love another man because the feelings would never be as full as are my feelings for you."
His answer had been unromantic, but terribly pragmatic and honest. "That does not make me feel good at all. You have to leave me with the choice of life and death. I do not want to be responsible for your life. I want to choose to remain with you, not to feel that I must. Musts do not feel good. They are a burden, not a joy. Please don't talk that way. Love me, and need me, but not to the point that you tell me you wouldn't survive without me. That is not a sign of your love, and, furthermore, I don't even believe you. So shut up and let me play my song."
I walked out of the room. I never gave Bill a chance to play that song. Nor did I give him a chance to talk about dying. He tried to bring up the subject, but I always avoided it. At the age of thirty-four, I didn’t understand how important that was to both the dying and those who would be left behind. Now, almost forty years later I know better. Time and loss have been effective teachers. My friend, Katherine, was particularly helpful. The way she died taught me how to help others spend their final days on earth.
It all began shortly after I returned home from spending two months in Western Australia where I had gone because my mother was dying. I got back at the end of October. Weeks later, Katherine was hospitalized with a strange set of symptoms. The doctors finally determined that she had contracted PML, Progressive Multifocal Leukoencephalopathy. Six months earlier, she had endured a round of chemotherapy to deal with a lymphoma that had recurred. The chemotherapy had compromised her immune system. As a result, the JVC virus that resides but remains inactive in many of our kidneys had been unleashed and had managed to break through the barrier to Katherine’s brain. There, it attacked the cells responsible for producing myelin, a fatty substance that protects the nerves of the brain. The loss of myelin was accompanied by the rapid deterioration of brain function. There is no known cure for PML. Suggesting that it was time for Katherine to go home and think about her legacy, the doctors released her a few days before Thanksgiving.
On Thanksgiving Day, my husband and I joined their family for drinks before dinner. That night, I experienced the quintessential Katherine: the sage Katherine who was courageous enough to confront death head on, and yet able to celebrate life to the very last moment. She asked her newly hired caregiver to help her maneuver over to the couch where I was siting. She put her hand on mind and whispered into my ear, ““I always knew I was going to get old, but I never thought it would happen so fast.” I looked at her. She was smiling. She knew she was dying, and yet she was smiling.
Three days later, Katherine’s husband invited us over for drinks and dinner. He explained that even though she couldn’t join us, the dinner had been Katherine’s idea. Several months ago she had made and frozen a lamb stew. She wanted us to enjoy it.
We found her sitting like a regal queen in her four poster bed draped with colorful silks and satins. She was watching ABC World News Charles Gibson was summarizing the events of the day. “In Paris, diplomats from the five UN Security Council states, and Germany, have failed to reach an accord on Iran sanctions. Today in Thailand, the last remaining bodies of people who died in the tsunami two years ago were buried.”
Katherine reached over, picked up the remote and turned down the sound. She patted the bed next to her, indicating that she wanted me to sit down. Taking my hand in hers, she attempted to smile. Her eyes complied, but her mouth refused. Her brain would no longer tell the left side of her mouth to lift
“Would you like a drink, Dear?” Thomas asked.
Katherine nodded and again attempted to smile. Thomas stood and picked up on of the sticks with a sponge that were in a box on the bedside table. He put it in his vodka martini and stirred it around, and then brought the wet sponge to Katherine’s waiting mouth. “Cheers,” she said as she struggled to raise herself to a full sitting position. Thomas put another pillow behind her back and then sat down again.
“We saw the doctor yesterday,” Thomas said, picking up where we had left off in the kitchen.
“Two to twenty-four months,” Katherine said in a voice that was surprisingly clear and strong.
‘No, Dear,” Thomas corrected her. “Two to four months.”
“Two to four months,” Katherine repeated in a quiet voice. “That’s not very long, is it?”
Katherine was not denying that she was dying. In spite of the deterioration of her brain, she was processing it. At the same time, she refused to fall prey to melancholia or to think of her self as a victim. That made it a lot easier to be with her and to talk with her about death and dying. She also made it easier by staying interested and involved in life. An interior designer and artist, she had amassed a significant portfolio. Before her diagnosis, she had booked a gallery and scheduled an exhibition for the last weekend in January. Now, she was adamant that it take place, even though she realized she would probably be dead before it happened.
In between our conversations about death, we talked about art. My husband made a cd of her paintings and spent hours looking at them with her on our laptop. She talked about how in another life she would have liked to be the artist Frankenthaler. We studied the artist’s life, and fantasized how it would have been had that been Katherine’s life.
Katherine talked about life and death as though they were inextricably entwined, and part of the same glorious story. And, she never lost her sense of humor, and her ability to see the irony in situations. One evening when we went to visit, Katherine confided in me. “They tell me to eat and give me something to help me shit, but they don’t give me any place to shit. Shit in your pants, they say.” Then she laughed at the absurdity of it all.
On December 12, Katherine herself decided to initiate Hospice care. Because she had lost the ability to sit up, she agreed to have a hospital bed installed in her bedroom. Regardless, she continued to find the energy to host an endless stream of friends and family members. She spoke honestly about dying, and yet she remained curious about the lives of others. At her memorial service, a young man stood up and said, “When she lay dying, and should have been totally preoccupied with the finality of it all, she was still interested in hearing about my life, and how it was going.”
The last time we saw Katherine was the night of the Winter Solstice; the night before we had to leave for our daughter’s home in Boise, Idaho. That night, we took seats next to Katherine’s bed. For several minutes, Katherine seemed unaware of our presence. She continued to stare blankly at the flickering images of the news broadcast on the muted television set. I reached over and took her right hand. Finally, she turned her head, and tried to smile.
She mumbled something that I couldn’t understand. I lowered my head and asked her what she had said. Moments later she raised her right arm and began moving her limp hand in a circle. “Life is change, always changing,” she said. This time, I understood her. In these words, Katherine captured the sense of impermanence and detachment that is at the heart of the Buddhist philosophy. She seemed able to accept death. She was calm that night, even peaceful in her being. Even the persistent indignities of impending physical death did not seem to disturb her.
When we left that night, we knew we would never see Katherine again. Yet we left with peace as well as sadness in our hearts. In accepting her own death, Katherine had helped us accept it as well. She died the morning of December 28. On the blog he had created and maintained since his mother entered the hospital, her son wrote, “Mom peacefully passed away at home this morning. The sun brightly shone on all of nature's splendor...a good day to die.”
I hope that, as a result of Katherine’s example, I am now better prepared to help the people I love find “a good day to die.”