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At home with death: A natural child-death
MEDICAL CARE
At home with death: A natural child-death Marry Keyser, C h u r c h v i l l e ,
Pa,
MANY PEOPLE end their lives in hospitals; Sammy completed his two-year life at home. I cried and worried and bitched (I also laughed and hoped and joked) during the year that I knew Sam would never grow into Sam, my man; but I celebrate the joy and meaning of his death. I bad learned to handle the constant crises of leukemia, but I was afraid of his dying until it came. While Sammy was struggling to live, I appreciated the clinical confines of the hospital. When Sammy was struggling to die, we wanted to be close to him. At the hospital Sammy could not have nestled between his Dada and me on a double bed with down comforters. We could not have prevented constant interruptions as easily as we took the phone off the hook. 1 could not have given him lip-smacking squirts of coffee with extra milk and extra sugar. Dave could not have held him for the final hours in our dear, old easy chair. At home no one intruded as we gave him back to God. Variety is also the spice of death. There are more possibilities for happy moments at home. When Sammy had fever and pain at night, 1 walked outdoors with him. Like any efficient nurse I was concerned with reducing his fever to prevent a seizure, but Sammy saw the moon. We stopped and gazed into the universe. Joy is possible and very special. Even when Sam had begun bleeding into his urine, he sang, clapped, and demanded more and bumpier tractor rides. We gave him tractor rides until we ran out of gas. Then we filled up the tank and gave him more tractor rides until the fan belt broke. We took him to the hardware store, which had all of his favorite toys: real tools and a selection of fan belts. We fixed the tractor and rode on past the sunset. Food at the hospital inevitably came when Sam had finally fallen asleep or had just vomited. Occasionally Sam was expectantly pounding with his spoon for a tray that never came. At home we seized likely moments to tempt him with a crisp piece of celery, tl pieces of watermelon, or a spoonful of butter. Grief is eased by
486
The Journal of P E D I A T R l C S VoL 90, No. 3, pp. 486-487
action. At home there are more ways to please each other. We found comfort for ourselves at home. We started each day with freshly ground coffee and an available bathroom. I sang when I liked. I rummaged around my stacks of books for a Nabokov or a mystery: something to speak to my mood or let me escape it. I retreated to my hammock and let the wind hold me and whisper to me. At nigl~ we both dissolved into a full hot bath. Our family schedule was regulated by needs, not visiting hours. We took turns caring for Sam and caring for each other. My father took Sam for his last car ride. My mother told Sam, "Diddle diddle dumpling, my son John went to bed with his stockings on," while Sam laughed and pulled off his socks. Wendy raced up and down the hall playing ambulance and shouting, "Emergency, emergency." Living was strained, but we were not immobilized around a hospital bed. How you will get through a death in the family depends partly on how you lace it. Our problem was to enjoy each moment of Sam's life, while knowing that death would come. As we cared and cried together, we saw clearly that this boy needed to die. Seeing this, knowing this, accepting this changed m\. reaction to his death. I grew ready also. Our hematology team-Roe, our doctor, Kathy a n d Sylvia our nurses, and Carole, our counselor-had been training me for death for almost two years. When Roe diagnosed Sammy's illness he said, "Leukemia is a potentially fatal disease, but have hope." On bad days they waited until I could control my voice. On good days we ate very sticky buns and shared the important developments in our lives: a dream of sailing into a freer life or a rotten Valentine's Day without an ounce of chocolate. Because they were honest about the limits of living with leukemia, 1 trusted them when it was time to talk about dying. Roe told us gently and simply, "The drugs have stopped working, If he bleeds, pushing platelets may not
Volume 90 Number 3
be able to stop it. If he develops an infection, antibiotics would be useless. We can give you pain killers to keep him comfortable." It would have been easier for them not to admit that Sammy was dying and continue transfusions. Instead they gave us the chance to face Sammy's dying. To deal with death at home you need both medical support and help with the business of living. I'm independent. I hate help, but I needed it. It takes more than one person for the constant care and comfort o f a dying child. Dave stopped going to work and shared Sam's death. This still left cooking, housekeeping, and babysitting. We simplified or ignored things, and my parents stopped working, drove a hundred miles, and got the house in shape. We had strong and conflicting needs. I wanted to phone a few close friends to tell them how unreasonable Dave was being about not having ice cream in the house and Wendy was being about refusing her bath. I wanted to say to another mother, "This is a time of awe and of anguish. I don't know what will happen next or how long it will last or what I will do." Dave wanted to cut the phone lines with a butcher knife, because an obnoxious acquaintance kept calling like a circling raven. We were hurting, so we hurt each other. Beneath the fog we knew that the tension couldn't last. At the end we were close. Wendy had become very independent during the last year. When I was at the hospital overnight, we set the alarm and she got on the school bus on time. We appreciated her independence, but we could not expect it
A natural child-death
487
or count on it. I had no energy to deal with demands for a different flavor of cereal and no emotional resources to handle her anger toward Sam. Two days before Sam died all our attention and concern were riveted on him. It was time for Wendy to leave with my parents. Staying at home to die is a choice that opens up many possibilities. Watching dying allows us to realize firmly if not gently what must happen. Sam's obvious need to die became more important than my desire for him to live. Finally there was nothing to do but wait, while Sammy gasped. It takes a long time to die. My body provided diarrhea as a diversion. I sketched Dave curled around Sam as they both slept, I read. I wrote. I waited. I was afraid of the physical agony of dying. Sam's death was amazingly similar to his own birth. He looked as if he were in labor. He seemed to know that he had a difficult and important job and he worked hard to accomplish it. The moment he died, Sammy looked at us and we shared his triumph. His death was a miracle, because it robbed death of its terror and it made the nature of death childishly clear. His spirit was free. At home we could make Sammy's dying as special as the red gas balloon that we floated above his bed. We miss Sam. Wendy says, "Mom, our family is too small." We pass a baby in a stroller and she says, "Don't you wish that were Sam and we could take him home with us?" We miss Sammy, but he had a full life and a triumphant death.
At home with death: A natural child-death Marry Keyser, C h u r c h v i l l e ,
Pa,
MANY PEOPLE end their lives in hospitals; Sammy completed his two-year life at home. I cried and worried and bitched (I also laughed and hoped and joked) during the year that I knew Sam would never grow into Sam, my man; but I celebrate the joy and meaning of his death. I bad learned to handle the constant crises of leukemia, but I was afraid of his dying until it came. While Sammy was struggling to live, I appreciated the clinical confines of the hospital. When Sammy was struggling to die, we wanted to be close to him. At the hospital Sammy could not have nestled between his Dada and me on a double bed with down comforters. We could not have prevented constant interruptions as easily as we took the phone off the hook. 1 could not have given him lip-smacking squirts of coffee with extra milk and extra sugar. Dave could not have held him for the final hours in our dear, old easy chair. At home no one intruded as we gave him back to God. Variety is also the spice of death. There are more possibilities for happy moments at home. When Sammy had fever and pain at night, 1 walked outdoors with him. Like any efficient nurse I was concerned with reducing his fever to prevent a seizure, but Sammy saw the moon. We stopped and gazed into the universe. Joy is possible and very special. Even when Sam had begun bleeding into his urine, he sang, clapped, and demanded more and bumpier tractor rides. We gave him tractor rides until we ran out of gas. Then we filled up the tank and gave him more tractor rides until the fan belt broke. We took him to the hardware store, which had all of his favorite toys: real tools and a selection of fan belts. We fixed the tractor and rode on past the sunset. Food at the hospital inevitably came when Sam had finally fallen asleep or had just vomited. Occasionally Sam was expectantly pounding with his spoon for a tray that never came. At home we seized likely moments to tempt him with a crisp piece of celery, tl pieces of watermelon, or a spoonful of butter. Grief is eased by
486
The Journal of P E D I A T R l C S VoL 90, No. 3, pp. 486-487
action. At home there are more ways to please each other. We found comfort for ourselves at home. We started each day with freshly ground coffee and an available bathroom. I sang when I liked. I rummaged around my stacks of books for a Nabokov or a mystery: something to speak to my mood or let me escape it. I retreated to my hammock and let the wind hold me and whisper to me. At nigl~ we both dissolved into a full hot bath. Our family schedule was regulated by needs, not visiting hours. We took turns caring for Sam and caring for each other. My father took Sam for his last car ride. My mother told Sam, "Diddle diddle dumpling, my son John went to bed with his stockings on," while Sam laughed and pulled off his socks. Wendy raced up and down the hall playing ambulance and shouting, "Emergency, emergency." Living was strained, but we were not immobilized around a hospital bed. How you will get through a death in the family depends partly on how you lace it. Our problem was to enjoy each moment of Sam's life, while knowing that death would come. As we cared and cried together, we saw clearly that this boy needed to die. Seeing this, knowing this, accepting this changed m\. reaction to his death. I grew ready also. Our hematology team-Roe, our doctor, Kathy a n d Sylvia our nurses, and Carole, our counselor-had been training me for death for almost two years. When Roe diagnosed Sammy's illness he said, "Leukemia is a potentially fatal disease, but have hope." On bad days they waited until I could control my voice. On good days we ate very sticky buns and shared the important developments in our lives: a dream of sailing into a freer life or a rotten Valentine's Day without an ounce of chocolate. Because they were honest about the limits of living with leukemia, 1 trusted them when it was time to talk about dying. Roe told us gently and simply, "The drugs have stopped working, If he bleeds, pushing platelets may not
Volume 90 Number 3
be able to stop it. If he develops an infection, antibiotics would be useless. We can give you pain killers to keep him comfortable." It would have been easier for them not to admit that Sammy was dying and continue transfusions. Instead they gave us the chance to face Sammy's dying. To deal with death at home you need both medical support and help with the business of living. I'm independent. I hate help, but I needed it. It takes more than one person for the constant care and comfort o f a dying child. Dave stopped going to work and shared Sam's death. This still left cooking, housekeeping, and babysitting. We simplified or ignored things, and my parents stopped working, drove a hundred miles, and got the house in shape. We had strong and conflicting needs. I wanted to phone a few close friends to tell them how unreasonable Dave was being about not having ice cream in the house and Wendy was being about refusing her bath. I wanted to say to another mother, "This is a time of awe and of anguish. I don't know what will happen next or how long it will last or what I will do." Dave wanted to cut the phone lines with a butcher knife, because an obnoxious acquaintance kept calling like a circling raven. We were hurting, so we hurt each other. Beneath the fog we knew that the tension couldn't last. At the end we were close. Wendy had become very independent during the last year. When I was at the hospital overnight, we set the alarm and she got on the school bus on time. We appreciated her independence, but we could not expect it
A natural child-death
487
or count on it. I had no energy to deal with demands for a different flavor of cereal and no emotional resources to handle her anger toward Sam. Two days before Sam died all our attention and concern were riveted on him. It was time for Wendy to leave with my parents. Staying at home to die is a choice that opens up many possibilities. Watching dying allows us to realize firmly if not gently what must happen. Sam's obvious need to die became more important than my desire for him to live. Finally there was nothing to do but wait, while Sammy gasped. It takes a long time to die. My body provided diarrhea as a diversion. I sketched Dave curled around Sam as they both slept, I read. I wrote. I waited. I was afraid of the physical agony of dying. Sam's death was amazingly similar to his own birth. He looked as if he were in labor. He seemed to know that he had a difficult and important job and he worked hard to accomplish it. The moment he died, Sammy looked at us and we shared his triumph. His death was a miracle, because it robbed death of its terror and it made the nature of death childishly clear. His spirit was free. At home we could make Sammy's dying as special as the red gas balloon that we floated above his bed. We miss Sam. Wendy says, "Mom, our family is too small." We pass a baby in a stroller and she says, "Don't you wish that were Sam and we could take him home with us?" We miss Sammy, but he had a full life and a triumphant death.