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KNOWING WHEN DEATH WILL OCCUR: “IT WILL BE WHEN. . .”
All the passages below are taken from the book “Final Gifts,” by Maggie Callanan and Patricia Kelley. It was published in 1992.
Dying people often seem to know when their death will occur, sometimes right down to the day or hour. Surprisingly, they often face this knowledge not with fear or panic, but rather with quiet resignation. Their attempts to share information about the time of death may be very clear and direct. On the other hand, some may be so vague and subtle that others miss or ignore them, or label such messages “confused.”
Doug was in his late twenties. A born athlete who’d grown up in a family of sports fans, he’d played football in high school and college, then returned to his hometown as assistant football coach at his old high school.
He’d had his coaching job for a little more than two years when an enlarged lymph node in his neck was diagnosed as lymphoma. He tolerated six months of chemotherapy treatment so well he rarely missed any time at work. But the cancer returned, this time in many parts of his body, and attempts at treatment failed.
Unable to care for himself, Doug moved back in with his parents. He was referred to the local hospice program. We managed to get his symptoms under control; he was very weak, but was feeling fairly well and looked as if he would live for several months.
Doug’s three siblings lived in the area and visited regularly. His parents provided most of his care, but the situation became strained when his youngest sister, Jane, was diagnosed as having cancer, too. Her chances for a cure were good, but the family decided not to tell Doug about her illness, for fear of upsetting him.
One Saturday evening Doug’s father called the hospice. “Something seems different,” he said.
When those of us who work with dying people hear that sentence we have learned to pay close attention. Sometimes patients or their families sense something is changing, but they can’t describe it exactly. Responding to such a call we often find subtle but significant changes; sometimes the person actually is dying.
This time I arrived, talked with Doug and examined him, and could find no changes. Neither Doug nor his parents could say what was “different” only that something was. I called the doctor anyway. She talked with Doug and suggested that she could come to the house or meet Doug at the hospital. Or we could wait and see if anything developed. Doug chose the last option. He and his parents were comfortable going to bed, knowing they could call me if necessary. Doug wanted to sleep. His parents said goodnight to him and offered me a cup of tea. We sat in the kitchen. I asked when Doug would be seeing his brother and sisters again.
“They’ll all be over tomorrow afternoon to have dinner and watch the football game with us,” his mother said. “This family is football crazy! Look at what Doug was doing today.”
She handed me a piece of paper on which Doug had drawn a diagram of a football play, with circles and arrows indicating two teams and the directions to be taken by each player.
On one team, the six circles representing the players bore his initials and those of his parents and siblings. From the circle with Jane’s initials an arrow ran to the edge of the field, but not out of bounds. The circle that bore Doug’s initials had an arrow that went across the line and out of bounds: beside it he had scribbled, “Out of the game by noon on Sunday.”
I studied the diagram.
“This might sound a little strange, but there may be something here that we ought to pay attention to,” I said. “He seems to be saying that something serious might happen before noon tomorrow.”
“What do you mean, ‘something serious’?” his mother asked.
“I really don’t know,” I said. “But it could mean a change in his condition, or even that he might die.”
At first skeptical, Doug’s parents grew concerned.
“How about asking Doug to explain the diagram?” I asked. “He could probably explain this better than I.”
“I don’t want to wake him,” his mother said. “We know Doug is ready to die. If that’s what it means, I think we’re prepared, and we can always call you again if something changes. I’ll get hold of the other kids tomorrow and ask them to get here early.”
In the morning, Doug was quieter than usual, but otherwise fine. Everyone arrived; each family member spent time with him. Just before noon Doug was lying in bed, talking with his mother. He suddenly became restless, saying he wasn’t comfortable, then sat up and asked his mother to rearrange his pillows. He seemed to be having trouble breathing. Then he lay back, closed his eyes, and died.
“See how peaceful he looks?” his mother asked when I arrived to confirm his death. “He knew this was going to happen, didn’t he?”
Doug hadn’t died as a direct result of his cancer; curious about the sudden change, the doctor asked permission to do an autopsy and found that a fatal blood clot had traveled to Doug’s lungs a condition Doug couldn’t have predicted.
“Maybe when you’re close to dying you know more about death than anyone else,” his father said. “I’m so glad he told us with that diagram.”
Did Doug’s drawing have any significance? Did he sense the time of his death, then use language familiar to his family to get that point across? Did he somehow know about Jane’s illness, even though his family had withheld this information? Perhaps.
His drawing was symbolic, and consistent with one of his and his family’s passions. It could have easily been missed. If we look, we can often find meaning in the communication of a dying person even a scribbled football play. Understanding what he might have been saying helped Doug’s family be a little more prepared for his death.
A widow for nearly twenty years, Polly lived with her daughter, Sue. Ten years earlier she’d had a cancerous breast removed. For more than seven years she was apparently cancer free. But the disease returned, spreading to the bones and growing through the scar on her chest, causing an open wound with a foul-smelling discharge. Sometimes it would bleed not dangerously, but enough to scare both mother and daughter. Polly’s other main problem was pain, a common problem when cancer spreads to the bones.
Polly was physically and emotionally weary, tired of pain and of dressings that smelled bad or were soaked in blood. Sue was frustrated and worried. Her doctor had warned Sue that her mother’s pain pills were very strong, so she gave them to Polly only when she thought her mother really needed them, fearing that frequent use would blunt their effectiveness.
Sue hated to change the dressing--it upset her mother to see it, and when she removed the dressing the wound often bled so she delayed changing it as long as possible, which caused it to smell. No matter what she did, Sue felt she couldn’t relieve her mother’s suffering. She also worried that her two small daughters weren’t receiving enough attention.
Because of Polly’s extreme pain, the hospice program accepted her, even though her cancer wasn’t immediately life threatening, to provide a month of home visits to see if we could ease her discomfort. The plan was to bring Polly’s symptoms under control and boost Sue’s skills and confidence in herself as a caregiver. By all accounts Polly would live quite a while; at the end of the month we planned to discharge her back to her own doctor’s care.
During my first visit, Sue wept as she described her mother’s pain; a tearless but exhausted Polly explained how discouraged she felt, and how she worried about her daughter.
“She spends so much time taking care of me she never has any time for her husband and little girls,” Polly said. “It makes me feel so bad.”
Within a week Polly’s pain was under control. She and Sue better understood the use of pain-relieving medicines, and how even if a person develops a tolerance to them, the dosage can be increased safely to relieve pain. Sue was learning to manage her mother’s care more effectively and efficiently; we showed her a simple way to clean and dress the chest wound that eliminated odors, stopped the bleeding, and needed to be done only once a day.
As Polly started to feel more comfortable, she took renewed interest in her granddaughters, and even volunteered to help with the housework. Halfway through the month of hospice care Polly, Sue, and I agreed they now needed only one visit a week.
I had a vacation scheduled; another nurse was to fill in for me. Just before the trip I said good-bye and reminded Sue and Polly that I’d see them in two weeks.
“But I won’t be here,” Polly said.
“What do you mean, Polly?” I asked.
“I’m not sure,” she said. “I just have a feeling . . .”
Polly couldn’t say more. Looking very doubtful, Sue asked what I thought. I said that although her mother was expected to live much longer she probably knew better than anyone, and asked Polly what she’d like to do. After some discussion Polly said she wanted everything to go on the way it was; however, she did want to see her sister and sole surviving sibling, Jeannie, with whom she’d had a less than perfect relationship.
As soon as Sue called, Jeannie traveled from another state to spend a few days. She and Polly had a wonderful visit “the best time we’ve spent together in years,” Jeannie told Sue as she was leaving for the airport.
The next week, Polly died in her sleep.
A few weeks later, Sue said, “I thought she had months and months to live. I’d have paid no attention to what Mother said if you hadn’t told us it could be important. My aunt was a little annoyed when she arrived; here she was, rushing to catch a flight and interrupting her life and her sister looked so well. But after Mother died, Aunt Jeannie couldn’t thank me enough for asking her to come.
“Those last two weeks were pretty amazing. I really didn’t believe Mother would die so soon, and I wasn’t worried, but I did find myself being much more affectionate with her. I didn’t usually go around hugging and kissing Mother and telling her I loved her. But that week we had some very good talks. I told her how much I’d admired her courage when Dad died, and her strength when her cancer came back. And she told me I was her favorite child I’m her only child! and a pretty good nurse. She said I’d done a good job of caring for her.
“The night before Mother died I sat with her,” Sue went on. “We talked--not about anything special, just little things. But it was nice and cozy. The next morning when I went into her room she was dead. She looked so peaceful, as if she’d just gone to sleep.
“The most amazing thing is that Mother knew she was dying and wasn’t afraid. She didn’t believe in God, or Heaven, or anything like that; once she said she didn’t like the idea of disappearing into nothing. But she obviously knew she was going to be dying soon and she wasn’t afraid, so I guess she thought it wouldn’t be so bad. Most of all I’m glad she told us it would happen soon. I wouldn’t have called Aunt Jeannie or said all I wanted to say, and I’d have missed the really special time we had.”
This is the value of listening and believing when people tell us when they will die. If we hear the message we can use the time left to say and do things we want and need to do. We can say, “I love you,” or “I’m so glad you were my friend,” or “You have meant so much to me,” or “I’m sorry for . . .” or even “I forgive you for . . .” Or, like Aunt Jeannie, we may see the person and have “the best visit in ages.” If not given a warning, or if we don’t hear it, we may find after a person dies that we regret not having taken the opportunity to say these things.
Born with muscular dystrophy, Michael found even the smallest activities to be real challenges. But he was a determined young man, bright and creative, with a sunny disposition.
“My body doesn’t cooperate with me, so I depend more on my mind,” he said.
His illness and weakened condition left Michael prone to infections. Even a simple cold could develop easily into pneumonia; consequently, he was no stranger at the local hospital, where the doctors and nurses all knew and admired him. As he got older and more disabled, the infections became more frequent. The doctors were increasingly concerned about his dwindling strength and weakened lungs; they explained that any serious infection could be fatal. None of this daunted Michael, who still planned on going to college.
Because of his many hospitalizations, Michael was nearly twenty when he graduated from high school with honors, as class valedictorian. He was thrilled when the state university accepted him; despite his parents’ concern, he persuaded them that he could live on campus “like a normal kid!”
They agreed to let him try. Wheelchair-bound, Michael needed help showering and dressing. To prevent his lungs from becoming congested, his position in bed had to be changed twice a night something he couldn’t do without help.
“Don’t worry, I’m a Rambo on wheels!” he told his parents. “I’ll figure it out.”
Michael soon formed a loyal group of campus friends who took turns helping him; dorm neighbors set their alarm clocks so they could help him change position during the night. The nurses in the student health clinic also kept a close eye on Michael, urging him to stay in the clinic whenever necessary. His buddies would camp out with him in the clinic to “make sure those nurses were taking care of him right.” Laughter followed this crowd wherever they went, and the nurses never objected to “Michael’s pajama parties.”
He survived his first year of college with only minor setbacks. But in his second year a flu epidemic spread across campus and Michael became ill. He developed pneumonia and was immediately sent to the hospital. So many times before Michael had been very ill but had recovered. Although his friends were also very concerned, Michael once again seemed to be responding to the antibiotic treatments. They all breathed sighs of relief and returned to their daily routines. The next day his father received a puzzling phone call at work.
“I love you, Dad,” Michael said. “And I want to thank you for being such a good father.”
“Michael, I’ll see you this evening when I get off work,” his father said.
“Oh, Dad, I won’t be able to tell you then,” he answered.
Remembering the crowd of young people that always seemed to fill Michael’s room, his father assumed he was referring to the lack of privacy.
“I love you too, Mikey. You’re a good kid and I’ll see you later,’ his father said, not knowing that all afternoon Michael had been placing similar calls to his mother, brother, and friends. When they all arrived at the hospital that evening, he was in a coma from which he never awoke. Michael died that night with the people he loved around him.
Caring for a dying person is hard work, especially at home. There are medications to be given, often around the clock, personal care to be done, meals to prepare, and sometimes dressings or treatments to do. And despite all of this, the tide of usual day-to-day responsibilities continues: bills must be paid, children must be cared for, laundry must be done. Families are frequently tired and it’s a massive job merely to focus on a particular day or a given moment. The future holds grief and loss, so many families and friends avoid looking ahead.
Michael’s family easily missed the information they were given. Polly’s daughter wouldn’t have believed her mother’s message, had it not been explained. Both messages clearly indicated an awareness of the future that families often subconsciously deny not because they don’t care or aren’t interested, but because they don’t understand the significance of what’s being said. Busy providing care and emotional support, they can’t see beyond these immediate concerns.
If such direct communication can be missed or misinterpreted, it’s easy to see how subtle messages can be overlooked or misconstrued.
“Mother wouldn’t think of meeting you without being dressed and having her makeup on,” Betty explained as she greeted me. “I hope you don’t mind waiting. She gave me specific instructions to entertain you while the nurse’s aide helps her get ready. Come into the breakfast room and we’ll have a cup of tea.”
It was a bright August morning as we sat in front of the lovely sun-filled bay window. I asked Betty to tell me more about her mother. She smiled.
“My mother may look small and frail, but she’s always been independent, with a strong sense of values. She and my father left Germany just before World War II broke out, without much more than a few possessions and the clothes on their backs. I was born here. It took a lot of hard work to reestablish themselves, but they did, and my father built a successful business. He died when I was six, so I was really raised by my mother. She managed the company until she retired last year and only then because she was sick.
“When she was diagnosed with colon cancer, we asked her to come and live with us, but she refused not wanting to be a burden on us, or leave her home and friends in Philadelphia. Last month she called and said she’d changed her mind. Her friends tell me that what really got her to come here was a series of falls that frightened her. She still hasn’t mentioned them to me. She’s very stoic. I feel sad because I know it was hard for her to leave Philly, even though she never talks about it, but I’m so relieved to have her here. We were very worried about her living alone.”
I asked Betty how she’d been managing her mother’s care.
“She’s insisted on hiring her own nurse’s aide, so I won’t have to take care of her personal needs. This bothered me at first because I wouldn’t have considered it a burden. I don’t work and the kids are in school, but my husband and I decided to go along with her wishes since it seemed so important to her that she make her own decisions.”
I agreed that was probably the best plan as it allowed her mother to maintain some control.
Suddenly we heard the ringing of a porcelain bell.
“Mother’s ready for you!” Betty said with a smile. She escorted me into the library, where Ilsa sat regally in a chair by the fireplace.
“I’m sorry to have kept you waiting,” she said in a charming German accent as we shook hands. “This illness has slowed me down a bit. But perhaps you’ve had a chance to get to know my daughter. Isn’t she wonderful? She and her family just moved into this lovely home a year ago, and she’s done all the decorating by herself!
“Betty! Did you show her the Christmas wreaths you’ve been making?” Ilsa asked. “I was born in Germany, the country where so many Christmas traditions started, so we’re already preparing for the holiday, even though it’s months away! Christmas has always been the most important day in the year for our family. It’s such a happy time.”
Each week I visited, Ilsa would direct Betty to show me their latest Christmas project.
“I know this will be her last Christmas, so we’re trying to make this the best one she’s ever had,” Betty said sadly to me. “But I keep pushing it out of my mind. She’s always been in the middle of all the festivities. It’s hard to imagine Christmas without her.”
By October Ilsa had grown far weaker and was spending more time in bed. She rarely complained but no longer seemed interested in helping with the decorations. Betty reported that she had become quiet and withdrawn, and appeared depressed.
“I keep trying to do more and more to perk her up and make her feel better, and it only seems to make her more withdrawn,” she said.
Depression is a normal part of dealing with the many losses experienced in the process of dying. And as with other emotions, depression should be respected. When I told Betty this, she seemed relieved. I suggested that she spend time just sitting quietly with her mother.
“The other day she said that Christmas can be a sad time, too. Perhaps she realizes this will be her last Christmas with us,” Betty said sadly.
“Yes, that could be it,” I replied. “But it could also mean that your mother might be aware that she could die sometime during the holidays.”
Betty was surprised and a little shaken by this thought.
“It’s really too early to tell,” I said. “Just keep doing what you’re already doing so well making each day the best it can be for her.”
Ilsa became weaker as the holidays approached. Although her care was going well at Betty’s house, she asked to be admitted to the hospice inpatient unit to die. Betty really wanted her mother to stay at home but, again respecting her mother’s wishes, she agreed. Ilsa was admitted to the unit on December 20.
Betty and her family spent Christmas Eve visiting with Ilsa, enjoying the carolers and festive atmosphere. As they were preparing to leave, Ilsa whispered instructions to her daughter for finding the gifts that had been hidden around the house. Betty was touched to learn that the nurse’s aide had secretly shopped for her mother and helped her wrap and hide the gifts back in October. Betty kissed Ilsa and everyone wished her a merry Christmas as they headed for home.
The next morning, after opening all their gifts, they were preparing to leave for the hospice unit. The phone rang. Ilsa had just died peacefully, without any warning.
I visited Betty the next day. She tearfully told me her ten-year-old had said, “Now Christmas will always be Grandma’s day, so you see, Mom, she will always be right here with us!”
“I’m glad Mother warned me in October,” Betty said. “I had all that time to think of it in a different way. Otherwise it would have been devastating to have her die on that day. She must have known somehow, and wanted to prepare me.”
Ilsa’s clear but subtle comment about the possible timing of her death didn’t change anything, but it did allow time for her daughter and family to prepare for that possibility. By living with this thought, they were able to become more comfortable with it and look at it in a different, more positive way than if it had come as a surprise.
“I live the American dream,” Nicholas said when I first met him. “I’m a man who had everything until this damn cancer hit a good marriage, three successful children, a big house, and the best Greek restaurant in the city. My employees aren’t just employees, they’re members of my family.”
The son of poor Greek immigrants, Nick was indeed successful, well respected, and loved by many. Scores of friends helped with his care after he became ill with stomach cancer at fifty-five. But the illness took a mean turn when Nick couldn’t eat anymore without getting sick to his stomach.
“It’s ironic,” he said. “I’m not hungry at all, it’s just that I really miss the pleasure of food. It’s been my life!”
“Every day he calls the cook at the restaurant to bring him something different for dinner,” his wife Christina said. “And every day the cook rushes over with exactly what Nick wants. Everyone knows he can’t eat it, but he orders it anyway!”
In early June Christina called, concerned about the way Nick was acting.
“Maybe you’d better come over and check him,” she said. “I think he’s getting confused.”
When I arrived, he was busy directing his wife to “get the sparkler cake now.”
“See? He’s all confused,” Christina said. “Our wedding anniversary is the Fourth of July, so the cook always makes us a big cake with sparklers on it but that’s more than a month away. I keep trying to explain this to Nick, but he keeps asking for the cake.”
I examined Nick carefully but could find no physical reason for this sudden change. I suggested to Christina that Nick might be more aware of what was happening to him than we were. Perhaps he was trying to tell her that he would die before their anniversary.
Upset, Christina called the family together to discuss this, and they agreed to get the cake and have the celebration the next day. It was a great party and Nick was unusually bright and active. To everyone’s amazement, he even managed to eat a small piece of cake without getting sick.
Nick died on June 30 and was buried on July 4, his wedding anniversary. At the cemetery Christina hugged me.
“Let me tell you what Nick said to me during the party,” she said in tears. “He told me he was proud of me as a woman, and as a wife, and he was proud of the twenty-six happy years we’ve had together. He thanked me and I cried and cried. But I thanked him, too. I’m so glad we celebrated our anniversary early. But we almost missed having that wonderful day because I thought he was just confused.”
In subtle and indirect ways, both Ilsa and Nicholas shared their special knowledge of when death would occur with the people they loved. Ilsa was clear; Nicholas’s family thought he was confused. Either message easily could have been missed.
Why don’t dying people simply say, “I’m dying on this particular day or at this exact time”?
We don’t know. There is much we have yet
to learn and understand about Nearing Death Awareness. But, in ways that are
direct, or subtle, or even silent, dying people are showing us that they do know
when their deaths will occur, and that they are not distressed by this
information. By listening and understanding these messages, we are given unique
opportunities to prepare ourselves for their loss, to deal with our fears of
dying, to use well the time that is left, and to participate more significantly
in this life event.
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