Reader’s Digest, October 1981; anthologized in Understanding Dying, Death, and Bereavement (Holt, Rinehart and Winston, 1985, 1990) and The Marriage and Family Experience (West, 1992). Feature, 2000 words
It was in May 1978 that 30-year-old Mary Ball, a vivacious practical nurse, learned she was probably going to die. That month she had undergone four operations: the diagnosis was widespread cancer. Unprepared, panic-stricken, Mary became deeply depressed. The fact that her mother had died of cancer when Mary was 16 magnified her dread. Then one day her mother-in-law yelled at her, Youre not trying! Mary realized that she wanted to make the most of her remaining time with her 32-year-old husband, Karl, and their two children.
Through 17 months of chemotherapy, she and Karl leaned on each other. Their hopes soared when Mary regained enough weight and strength to return to work. Then in 1980, there was more surgery, followed by more chemotherapy. The prognosis was not good.
This is the story of Mary Balls dying—and of how a remarkable program helped to ease her last four months with grace and dignity.
November 12, 1980. In bed in their trim little house in rural Northford, Conn., Mary and Karl cling together, crying. Earlier that day they have learned from Marys doctor, Bruce Lundberg, that cancer has spread throughout her bones. No treatment will make her well. Dr. Lundberg has suggested a different kind of help—the Connecticut Hospice, a Branford-based team that, since 1974, has cared for more than 1800 dying patients and their families.
November 13, 1980. A hospice nurse telephones to ask if she can visit that night. Mary and Karl say no. Mary has just had radiation treatment for her pain, and she is tired. Besides, they are uncertain, apprehensive. What are they getting into? They must know more before they involve the children, Karl, Jr., 15, and Matthew, 6.
November 17, 1980. The hospice nurse calls again. The Balls take the outstretched hand. Home-care nurse Florence Larson arrives. Forthright, lively and gray-haired, she has been a nurse for over 30 years. She tells them that the hospice team can assist with pain management, nursing care, household help, money problems, counseling for the children: We will support you in whatever you want to do to make Marys life as happy and normal as possible.
Mary would like to remain with her family as long as she can. Winter is the slack time for a painting contractor, and Karl will stay home to care for her. Florence says she will visit regularly. The hospice team will be available day or night, seven days a week.
Mary has one urgent question: Can her pain be controlled? Dr. Lundberg has suggested morphine, but she is scared of it. Florence gently explains that morphine is an excellent painkiller and the correct dose wont bomb you out.
Who will pay for all these services? Karl asks. Your insurance, Florence answers. But youll never see a bill. Well handle the paper work.
When Florence leaves 90 minutes later, the Balls feel as if a weight has been lifted from their shoulders. But they do not want counseling for the children. I want to deal with them in my own way, says Karl. Leery of interference in their lives, they ask Florence to come just once every two weeks.
November 24, 1980. Mary visits Dr. Lundberg. Her pain persists, and having mulled over Florences explanation, she is willing to try morphine. Dr. Lundberg prescribes a dose to be taken orally every four hours.
November 27, 1980. Karls brother and sister-in-law are at the house for Thanksgiving Day. Suddenly, Marys pain becomes unbearable. Anxious not to spoil the holiday, she takes more morphine and huddles on the sofa in the den trying to hide her agony. Karl telephones Florence. She calls Dr. Lundberg, who doubles the dose of liquid morphine and prescribes a booster shot. Florence picks up the medicine at the hospice in-patient building. About an hour after Karls call she is giving Mary a shot of morphine. A half-hour later, Marys torment over, Florence leaves and the party goes on.
December 11, 1980. Dr. Lundberg and Mary discuss the prospect of more chemotherapy. They conclude that the risks outweigh the potential benefits at this stage. To Florence Mary says, I dont want to feel sick. I want to use the time I have left to enjoy and be part of my family. Florence says, I think thats up to you and your doctor, and I support you in that decision.
Christmas 1980. Mary makes three shopping trips to buy the familys presents. She tires easily, so Karl pushes her up and down the store aisles in a wheelchair that Florence had ordered. She attends a church pageant Matt is in and supervises the trimming of their tree. In good spirits, Mary refuses a visit from Florence.
December 31, 1980. Mary is constipated. Florence comes to her aid. Natural fruit juices finally do the trick. Florence is my security blanket, says Mary. Its a relief just to hear her voice. Florence always seems to have time for a chat, a cup of coffee, a back rub for Mary.
January 2, 1981. Unable to keep her liquid morphine down, Mary needs a booster shot. Noreen Peccini, another member of the hospice home-care team, teaches Karl to give the injections to relieve him of the helplessness he hates. Five years ago I couldnt even show him an I.V. bottle, grins Mary. Now he does everything.
January 22, 1981. Mary is in greater pain, and Dr. Lundberg increases her morphine. She is eating less and sleeping more, but she is awake when the boys come home from school. Reserved and self-sufficient like his father, Karl, Jr., says little when he comes in to see her. Matt, ebullient and gregarious like his mother, hops into bed for a cuddle. Karl, Jr., still brings home top marks and plays football after school; Matt still asks Marys permission to have friends over and she still reminds him to change his clothes. We just take one day at a time, Karl says. I answer the kids questions and try to tell them things at the right time. I told Karl, Jr., that his mother might have to go into the hospice in-patient facility, and he is aware of the eventuality and that is enough.
January 28, 1981. At 6:30 p.m., Florence receives a call from a terrified Karl: Marys face is puffed up like a balloon. When Florence arrives at seven, Mary is so scared she has vomited. Florence establishes that the swelling isnt life-threatening. While she is alone with Florence, Marys eyes fill with tears. I am getting so discouraged, she says. Sometimes I hate to tell Karl how much I hurt, because he goes crazy—not that crying is crazy—wishing he could do more for me. Florence sits with her a long time, talking quietly.
January 29, 1981. Hospice physician Will Norton visits to check on Marys swelling. He notices her bed sores and orders a hospital bed with an automatic inflating and deflating mattress to relieve the pressure on her back. The bed, delivered the next day, makes Mary at least 100 percent more comfortable.
February 10, 1981. Mary wakes up disoriented. For a moment she doesnt even recognize Karl. After he moves her about in the bed and gives her some apple juice, she is herself again. But she is no longer able to walk to the bathroom alone, and Karl wakes every three hours to give her her morphine and turn her in bed.
February 28, 1981. Marys pain is increasing, her breathing is shallow, her pulse rapid. At times she is confused. Im taking a turn for the worse, she tells Karl.
March 2, 1981. Mary is worse. Her dying is down to a matter of days. She is relieved and ready, but suddenly desperately afraid of becoming a burden. Should she go to the in-patient facility? Florence consults with Karl, who assures Mary he can handle the situation. To take some of the pressure off Karl during the day, Florence arranges for eight-hour-a-day help.
Evening. Mary perks up when Charles Rodrigues, their minister, comes in. You know, Charles, Im dying, she says. And Im not frightened. Karl is immensely comforted to hear this.
March 3, 1981. On behalf of the children of the church, a boy presents Mary with a card and a dozen roses. As Karl arranges the flowers in the kitchen, Matt asks for one. Later he gives his mother the rose and a card. On it he has drawn himself with arms spread wide, the way he did when he was very small, saying, I love you, Mom, this much.
March 5, 1981. Marys pain is excruciating. Karl calls the hospice for the go-ahead to give Mary a shot of morphine. Later Florence offers to stop by, but Karl says, Gee, Florence, I dont think you need to. Everything is fine. Florence doesnt insist. Mary is dying, and theyre handling it, she says.
March 8, 1981. Mary has a 105-degree fever and is often delirious. Her family—sister, brother, father, aunt—come to say good-by.
March 9, 1981. Karl is worried that the children might be frightened by their mothers dying at home. He considers moving Mary to the hospice building. Yet he believes she still wishes to stay at home. Mary is in a dreamlike state, unresponsive; but, while Karl is talking with hospice nurse Ruth Mulhern, she becomes alert. The time has come for her to go into the hospice, she says. She thanks Karl for all he has done for her and tells him she loves him.
That afternoon, Florence helps to settle Mary into her new surroundings—a cheerful, plant-filled room at the hospice building.
March 10, 1981. Evening. Mary is in a dream world, but when Florence touches her she responds, Florence, Im so glad to see you. It is so like Mary to be thinking positively. Then she drifts away, and as Florence and Marys aunt stand at her bedside, she quietly stops breathing.
Karl is walking out of his front door when the phone rings. The boys are already on the way to the car to go to the hospice. He calls them back and sits them down on the living-room couch. As he puts an arm around each, he tells them that their mother has just died. Crying, he says, Except for her love, you two are the greatest gift your mother ever gave me.
March 13, 1981. At Marys wake, flowers overflow the room. Karl, Jr., stands beside his father. When Florence approaches, the shy, quiet boy, who never reaches out to people, embraces her.
March 14, 1981. The church is packed for Marys funeral. At the close of the service, the congregation sings her favorite hymn, All Things Bright and Beautiful, in celebration of her life.
March 24, 1981. Florence visits Karl. The boys have gone back to school. He is preparing to return to work. Karls father, who came from Florida for Mary's funeral, will stay as long as he is needed. Florence tells Karl the hospice has volunteers trained to help families with their grieving. He declines more help, but thanks her for everything. Without your assistance we couldnt have lived Marys last months the way we wanted to, he says.
Back at the hospice, Florence has a sense of completion. She shrugs off her colleagues praise. Were here to guide, not take over, she says. From the day I walked in, I was amazed at the way Mary and Karl related to each other and to me. They never drained me; they gave. I always left there a little wiser.
Copyright © 1991 by Judy Sklar Rasminsky. This material may not be reproduced in any manner or medium without written permission. For information, contact jud...@challengingbehavior.com.