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REACTIONS TO DEATH
All the passages below are taken from the book “Final Gifts,” by Maggie Callanan and Patricia Kelley. It was published in 1992.
People react in many ways to the news of the impending death of someone they love. They may feel shock, disbelief, fear, anger, sadness— or, as often occurs, a continuously shifting blend of these and other strong emotions.
Immersed in these feelings, they wonder, “Does he know he’s dying? Should I talk about it? What would I say?” They may ask themselves, “Should I tell her I’m sorry, or should I pretend that I don’t know? Should I be bright and cheerful and try to lift her spirits? But it’s terrible that she’s dying, and I don’t want her to think I don’t care.”
There’s a reason for this awkwardness. Besides the absence of easy answers to questions like the ones above, death has become remote, no longer an integral part of life, but a fearsome and unwelcome visitor.
Once, the business of dying was a part of the business of living. With several generations of a family often residing under the same roof, children helped Mom and Dad care for Grandmother, who spent her last months on a bed in the living room. Or Grandfather came to live in what had been the sewing room; after his stroke, the doctor visited the house, examined the old man, and said, “There’s no point in moving him—-he’ll be better off here in his own place with his own folks. Just keep him comfortable and call me if you need anything.” In many countries, this remains the way people die: at home, cared for by their families, with the process of dying a part of everyone’s life.
Today many families don’t have close, frequent, or continuous involvement with the one dying. Unlike earlier generations, they don’t learn how to be at ease with someone whose life is coming to an end. Illness and death have been moved out of the house and into the hospital or nursing home. Professionals provide the care; relatives and friends become spectators watching something occur—-not in a continuous stream of emotions and experiences from which to learn, but in awkward chunks of time, determined by official visiting hours that leave them uncomfortable and unsatisfied.
Some health-care professionals don’t want to spend any more time or energy than necessary with dying patients. Many professionals believe in “protecting” patients and families from the gravity of an illness, or the news of impending death. Operating from that perspective, they may mislead families about a patient’s chances for recovery by withholding or softening information. Others may limit family members’ contact with the person.
As spectators, people not only have to cope with the pain of knowing that someone they love is dying, but must do so in a state of uncertainty, not sure of what to do, how to do it, or when. Many people see death acted out mainly on television or in the movies, where it is over-dramatized and designed to fit conveniently into a time slot. In real life, death isn’t always a handy matter of minutes or hours, but a gradual process that can last weeks, months, sometimes years. Instead of a last-gasp sprint, death can be a marathon.
In new circumstances, most people feel uncomfortable until they’ve grown accustomed to the situations and their roles in them. If you’ve had no experience with death, it’s unrealistic to expect that you’ll feel comfortable and competent around a dying person.
The Physical Process
As families and friends deal with the dying of someone they love, they’re full of memories of the person, once whole in mind and body. Uneasy with the changes they now see, and fearful of changes to come, they suffer, too.
People often assume that in every case a given disease—-emphysema, AIDS, cancer—-brings the same type of death. But each death depends on many factors—-the person’s age, the progression of the illness, the presence or history of other health problems, and the systems or organs failing most quickly.
The last months of life for a person with a terminal illness can have many possible scenarios. Most people experience several troublesome symptoms; some have many, others seem to have none. A few people may feel and look comparatively unchanged until weeks
or days before dying; some have episodes of acute illness interspersed with periods of feeling well; others undergo gradual declines. Some people die while asleep or in comas; others are aware, even communicative, until their last breaths.
During the last months of living with a terminal illness, troublesome symptoms can arise at any time, and health-care professionals try to anticipate those most likely to affect an individual.
For the layperson, the thought of caring for someone dying, especially at home, can be frightening and overwhelming. But the best care possible is usually that given by family and friends.
Some people have dry or sore mouths; weight loss, fragile skin, and reduced mobility can lead to pressure sores. Some people experience nausea and vomiting; others have problems with constipation or diarrhea. Some become incontinent. Some people develop coughs, or have difficulty breathing.
Some people have problems with bruising or bleeding, or develop bones so brittle that they can snap when bumped. Some treatments cause hair loss, bloating and weight gain, or rashes.
Many people assume that terminal patients, especially those with cancer, will have pain. That’s not always so; some have no pain, others have mild to moderate pain that can be controlled with ease. A few people have pain so severe that expert assessment and care are needed to bring it under control.
Some patients are calm; others have periods of extreme anxiety, manifested by fidgeting or picking at the bedcovers. This unsettled state may escalate until the person is extremely agitated. Some conditions cause dementia—-the loss of the ability to think, remember, or reason. Sometimes people seem to reverse their schedules, sleeping most of the day, becoming more alert at nightfall. This can exhaust caregivers.
The sense of taste can change—-foods that were favorites become bitter or unappealing. In a change that can be frustrating for family and health-care workers in nonhospice settings, many people lose interest in food and fluids—-seemingly part of the body’s “slowing down.”
A dying person’s most common symptoms are weakness and fatigue. Most people weaken to the point that they have difficulty doing anything for themselves. They may become unable to walk, to turn themselves in bed, to concentrate on a conversation, or even to open their eyes. They may spend much of the day resting or sleeping. Often the sleep deepens, and the sleeper slips into unconsciousness; gradually the breathing slows and stops.
When Death Is Close
It’s hard to predict the time of death, but there usually are signs that death is likely to occur within hours or a few days.
One sign is difficulty swallowing. If the person has been showing little appetite for food and water, the family may not realize this inability is more than merely lack of interest. The resulting dehydration usually isn’t troublesome, and actually can increase a dying person’s comfort, by reducing the incidence of some uncomfortable symptoms such as vomiting, pain, or difficulty in breathing. It’s better not to put small amounts of fluids into the mouth hoping the person will swallow; if she can’t, the fluid runs into the lungs. When a person no longer can swallow, she doesn’t need fluids; it’s sufficient to cleanse the mouth with moist sponges and to moisten the lips with a little cream. At this juncture many medicines may be discontinued; others can be given in ways other than by mouth.
Sometimes mucus gathers in the mouth, throat, or lungs, and air flowing past it makes a rattling noise. This doesn’t necessarily mean the person is having difficulty breathing. Turning the patient onto his side often reduces the rattling. If he does have difficulty breathing, oxygen may be used, or medicines to dry the mucus or to keep air passages open.
As death nears, a person’s breathing may change—-become irregular, speeding up for a while, then slowing down, even pausing for several seconds before starting again. Or the breathing may be louder for a while, then very faint and quiet.
The body’s temperature may rise, while at the same time the hands and feet cool, perhaps turning blue or becoming mottled; sometimes the lips and nails turn blue. Generally neither the raised temperature nor the cool extremities and mottled skin disturb patients, and they require no treatment. Some people experience periods of profuse sweating, and need frequent sponging, dry linens, and good skin care. Output of urine and stool usually drops, with the urine becoming darker. Increased weakness may lead to incontinence.
A few people have involuntary movements, not unlike the twitches that happen when you’re falling asleep. These don’t usually bother the dying person; if they do, medicines can relieve them.
As the person gets weaker and sleepier, communication with others often becomes more subtle. Many people want the company of one or two important people. Often they pay little attention to what is going on; they seem not to listen, or their eyes become glazed—-as if they’re looking at, but not seeing, people or things. Sometimes their eyes remain half open, whether they’re awake or asleep. But even when people are too weak to speak, or have lost consciousness, they can hear; hearing is the last sense to fade.
These changes can happen in the hours before death, two or three days before, or sometimes earlier. One or two signs may come weeks or months before. Experienced professionals know the signals indicating that death is truly imminent.
Provided any uncomfortable symptoms are well managed, death can be peaceful. The most obvious sign of death is an end to breathing. If breathing has been very quiet, or alternately slowing down and speeding up, you may have trouble deciding whether it actually has stopped. Sometimes the last few breaths sound like sighs. If the dying person is alert, you may see a slight smile or a look of farewell, or notice the eyes lose focus, then close. If he or she is asleep or unconscious, you may hardly realize what has happened.
When describing the dying people in this book, we haven’t given much detail about their physical conditions. It’s not that we want to minimize the effect of physical deterioration, but Final Gifts isn’t about the physical care of the dying. It is about Nearing Death Awareness, and its message can help balance your sadness and exhaustion.
In spite of the body’s breakdown, dying people who develop Nearing Death Awareness can find peace, comfort, and healing of emotional and spiritual pain. By anticipating, seeing, and learning from Nearing Death Awareness, families can be more aware of the part of the person they love that is much more than the physical self.
Physical changes do cause many emotional difficulties for the person dying, as well as for family and friends. When a father becomes incontinent and his son must clean and change him . . . when a husband no longer can brush his teeth and his wife must moisten his dry, sticky mouth . . . when a brother is in pain and his sister must give him medicine . . . these occasions can demonstrate great love. They also can generate great pain and lead to many feelings and questions more difficult to cope with than physical needs.
When someone you love is dying, you’ll always be dealing with sadness. But your response to that sadness depends on many elements, often related to your previous experience with death.
If you haven’t had much experience or haven’t had role models who showed you how to behave around dying people, how can you manage? There is no “right” way to help a dying person, but the following pages contain some suggestions.
Understanding Your Feelings About Death
What is it like for those who are dying and for those who love them? What are your questions and anxieties? If you were dying, would you be angry that we can put people in space but haven’t found a cure for your terminal illness? Would you resent having to give up your job to someone less qualified but healthier? Would you hate being dependent on others? Would you feel frustrated at having to relinquish control over so many aspects of your life? Would you be frightened of what dying might feel like? Would you be scared of what happens after death?
It isn’t necessary that you have answers to all your questions; most people don’t. But identifying your concerns, fears, and preferences can help avoid misunderstandings with a dying person, whose concerns, fears, and preferences may differ from yours.
For example, you might abhor the idea of being hospitalized and prefer to die at home. However, your dying friend might feel more secure in a hospital.
Or consider the question of when to discontinue treatment—-often a very difficult decision arrived at by a dying person only after much thought, discussion, and emotional pain. Don’t challenge such a decision, support it. You can do this more easily if you reflect on what you’d prefer, and see how your outlook parallels or diverges from the perspective of the one dying. It’s important not to force your concept of dying onto someone else; let that person’s ideas about death take precedence.
What the Dying Person Feels
After exploring your feelings, try to imagine those of the dying person. By trying on the idea of dying you’ll have a surer sense of what to say and how to help. At this point it’s worth reflecting on the stages of dying as described by Dr. Kübler-Ross: denial, anger, bargaining, depression, acceptance.
Although Dr. Kübler-Ross has labeled these experiences “stages,” a person doesn’t necessarily progress through them in orderly fashion. These emotions aren’t exclusive to dying, either; any crisis or major life change can trigger them, which means that they will be familiar to almost any adult. These feelings often are easier to understand if we see them in the context of what dying people are trying to accomplish: they’re struggling to accept the reality of their diagnosis, to adjust to life with illness, and to prepare for approaching death. These are enormous tasks; it’s no surprise that the emotions accompanying them are varied and painful, sometimes difficult to understand, even overwhelming.
Denial is the refusal to accept reality, and grows out of shock. Told an illness is incurable and fatal, people often respond by saying, “I don’t believe it! You must have made a mistake! This can’t be true— I’m going to get a second opinion!” Sometimes they think, “Well, maybe most people with this illness die, but I’m going to beat the odds.”
Denial can be expressed in behavior. Getting a second opinion on any grave diagnosis is a wise step, but seeking several “second” opinions may be a way of trying to avoid the truth. Denial also can take the form of refusing or “forgetting” to take medicines or keep appointments for treatment.
Why do people engage in denial? When we receive news too painful to absorb, we use denial to protect ourselves, to buy time during which we can adjust to a new and grim reality. Assuming a dying person understands his terminal diagnosis, respect expressions of denial. When you encounter them, don’t challenge. It’s not wise to try to make a dying person “face up to reality.” Most people abandon the denial defense, usually as they become sicker or weaker, but many go back and forth between acceptance and denial. A person who yesterday was talking realistically about not getting any better may suddenly say, “When I get well, we can go camping again!”
It’s harsh—-as well as cruel and unnecessary— to try to break down the denial with a response such as “You know you’re much too sick; you’re never going to get well, and you’re never going camping again.” However, neither should you reinforce or encourage a refusal to face reality by going along with it. Don’t lie—-it makes you a partner in denial, and though false cheer may seem momentarily comforting, eventually the person will move out of this stage and may want to talk with you about dying. If you’ve conveyed reluctance to face reality, the dying person will hesitate to talk with you about death, and may feel unsupported or even abandoned by you.
If you should neither challenge nor encourage denial, what should you do? You should recognize the wish or desire behind it. When your dying friend talks about getting better and going camping again, you could say, “Wouldn’t that be fun!” or “I bet you’d like that!” These responses acknowledge your friend’s hopes and wishes without reinforcing denial.
In some people, denial can be iron-clad and permanent.
As I arrived for my first visit with Amelia, eighty-seven, her son greeted me in the driveway.
“Please don’t say anything to Mother about hospice or cancer,” he said. “She often seems confused and doesn’t know about her illness. It would only upset her if you mentioned it.”
I introduced myself to Amelia as a nurse who would be stopping by to see how she was doing.
“Lovely!” she replied.
I asked about her medical history. She responded in great detail about her children’s births some sixty years before, her gall-bladder surgery at forty-five and bunion removal ten years later, along with a variety of dental surgery. Not once did she mention having lost both breasts to mastectomies only three years ago, or the chemotherapy and radiation treatments she’d been undergoing since then. I excused myself and went downstairs to ask her son if the doctors had explained his mother’s illness, surgery, and treatments to her.
“Yes,” he said with a smile. “Many times.”
Back in Amelia’s bedroom, I finished listening to her chest with my stethoscope.
“What happened here?” I asked, pointing to the scars left by the removal of her breasts. She looked down with great surprise.
“Well, for heaven’s sake!” she said.
Amelia lived another year in comfort and happiness; I visited twice a week, but she never “remembered” who I was or why I’d come. She completed each day’s New York Times crossword puzzle with great accuracy, but never mentioned her illness, and neither did I.
What if the denial comes not from the dying person but from others? Friends and family often engage in denial longer than a dying person. The news is too hard to bear; they pretend it isn’t there. Normal and understandable, this reaction nonetheless can be hard on a sick person. Family members may make comments like “You look so much better today!” If true, this is fine. But if untrue, what she hears is the other person’s inability or unwillingness to deal with the truth.
A person may try to break through the family’s denial by saying, “I know I’m very ill and that I won’t get better.” But often the family’s response leads him to decide the truth is too painful. A strange conspiracy arises, in which everyone pretends the patient will recover. It takes tremendous energy to sustain this fiction— energy that is in short supply for the one who is ill. The weight of another’s denial adds to a patient’s burden, often causing a dying person to withdraw from those who are denying, increasing his sense of isolation.
Dying people may feel angry. It’s not unusual to hear someone with a terminal illness ask, “Why is this happening?” Some people feel angry at God for allowing them to get sick, at their doctors for not being able to find a cure, at the government for putting money into weapons instead of medical research, or at the world in general. No matter how it’s directed, most anger will be expressed to those who are closest and safest—-family and friends. In the presence of such vehemence, it’s very hard to avoid feeling hurt. Responding sharply often leads to arguments, which rarely accomplish anything. Besides not working, attempts to talk a person out of the anger—-“Now, you know the doctors did everything they could . . . You should be grateful, things could be worse”—-may intensify the patient’s feelings. You could wind up being perceived as making light of the patient’s concerns or taking the “enemy’s” side.
It’s more useful to look for the cause. Think of anger as a feeling that develops from another emotion. In people who are terminally ill, the roots of anger often are frustration, resentment, or fear.
Frustration can stem from helplessness at losing control and becoming dependent on others; resentment, from seeing others’ lives go on; fear, from uncertainty about what dying is like.
Diagnosed with widespread incurable cancer at thirty-three, Dan was a very angry young man. Before his diagnosis he had done well at balancing the responsibilities of working as an electrician, being a husband and father, and leading his son’s Cub Scout troop. Within ninety days, however, he was too weak to get out of bed or brush his teeth. He had to quit working. If he wanted a drink of water, medicine to relieve his rapidly increasing pain, or to use the toilet, he needed assistance. He couldn’t help raise his children, or do even the most minor chores. His wife was always busy managing the household or finding others to assist her, and Dan’s complaints about how her tossing and turning while asleep caused him pain had driven her to take a bed in an adjoining room.
When Dan was admitted to the hospice program, we guessed that most of his anger grew out of frustration at his helplessness. He’d lost his livelihood. His roles as husband and father had shrunk. He had no control over his illness, and was forced to rely on others to satisfy even very basic needs.
All this made perfect sense—-but logic isn’t necessarily a salve to anger. Instead of trying to explain Dan’s anger to him, we responded to the emotion that lay beneath it. Our goal wasn’t to diminish his anger, but to decrease his feelings of helplessness by increasing his sense of being in control.
We began by letting Dan direct everything possible—-meals, visitors, bathing arrangements. Small matters, true; but they were Dan’s to control. We respected his wishes, letting him see that he had a degree of autonomy, as well as our empathy. This was the beginning of helping him understand and work through his anger.
Dan’s bitter comments and snarled requests for assistance went from being constant to being intermittent. One morning as he finished a litany of complaints about how badly he’d slept, I said gently, “It sounds like you had a rough night.”
“You’re damn right it was rough,” he snapped. Then he nodded and sighed. His eyes filled with tears, and he spoke again.
“You have no idea how bad it is at night,” he said, looking at his wife. “I hate waking up in pain, and needing Elaine to get my pills. Sometimes she doesn’t hear me, so I try to wait, but the pain gets worse. I hate not being able to manage the pills myself, and having to bother her. I wish she’d sleep in here, but I know she needs her rest.”
Now it was Elaine’s turn to be angry. “But you told me it made the pain worse when I turned over in bed,” she said, with tears in her eyes. “There’s just no pleasing you!”
“Dan, it sounds as if you’re missing Elaine,” I said. This unlocked a flood of emotions; Dan wept as he tried to explain to Elaine how sad and lonely he felt. She responded by explaining how it hurt her to sleep away from him, thinking he didn’t want her around.
They made a deal; Elaine would return to their bed, with the pain pills and a glass of water beside her on the night table. Dan could wake her without any effort; she could reach over, give him the pills, and hold the straw to his lips while he swallowed. Then they could return to sleep or lie awake together and talk. Dan lived only three more weeks, but they were better than many of the weeks that had gone before.
“Some of our best conversations were in the middle of the night,” Elaine said later. “He often said he slept better with me there, and I know it was better for me. Sometimes we’d talk about the early years of our marriage, and his hopes for the boys, and how awful it was that he’d gotten sick. We’d cry because we didn’t know how we’d manage without one another. It sounds sad, and it was, but it was a lot better than yelling at each other, as we’d been doing. That last week, I’d wake up some nights and he’d be lying there watching me. He’d smile and I’d put my arms around him and we’d go right back to sleep.”
Dan and Elaine were able to break down the wall of anger they’d built to separate themselves from one another, and in doing so were able to talk about the emotions that had made them angry at one another, at themselves, at the whole situation. It wasn’t easy to tear down that wall, but it brought them closer at a time when they needed to be as close as possible.
If you’re encountering anger in a sick friend or relative, and suspect that helplessness is behind it, try to empathize. Say something like “I imagine it’s hard to have to ask for help all the time” or “This seems as if it’s very frustrating for you.” Whenever possible, give the dying person choices and control. Respond to the frustration, not the anger.
Anger also can result from resentment, perhaps at seeing coworkers, friends, or family members enjoy responsibilities, opportunities, and futures denied the one dying.
Liz, a nurse, was dying of breast cancer at thirty-two. When diagnosed she was working in a small hospital in her hometown. After receiving treatment several hundred miles away, she returned to spend her last months in the hospital where she’d worked.
These were difficult months for everyone involved. Besides disfigurement, Liz was experiencing a great deal of physical pain. Her former coworkers were saddened by her situation, but also irritated by the steady stream of complaints from an often angry Liz.
The nurses on the unit where Liz was dying noticed a pattern. Several times a week, former coworkers would bring lunch to Liz’s room. They’d talk about what was happening on her old unit, about how patients Liz had known were doing, and about new cases and treatments. During lunch, Liz would get grumpier and grumpier; all afternoon, and into the evening, she’d be snappy and hostile.
One night a nurse who often took care of Liz on the evening shift brought up the subject.
“You seem upset,” she said. “Is it something I can help you with?”
“No, I’m just in a bad mood,” Liz replied. “I always seem to be in a bad mood.”
“Well, no,” Liz said after a moment’s reflection. “A lot of times in the evening I find I have no patience. Everyone seems to get on my nerves. You must have noticed.”
“Yes, I did,” the nurse said, sitting in the chair beside Liz’s bed. “I’ve also noticed that it seems to happen on particular days.”
“What do you mean?” Liz asked. “Well, I come in at three in the afternoon. Whenever the day nurse tells me one of the staff from your old wing has been by for lunch, I know I’ll find you upset.”
Liz thought about that and nodded.
“That’s true,” she said. “It’s worse on days when they’ve been here. They really bug me.”
The nurse asked how the visits usually went; Liz described their conversations and said that at one time she’d enjoyed them.
“I liked catching up on all the patients and the gossip,” she said. “It was fun, and it made me feel I was back home again. But it doesn’t feel like that anymore.”
“What does it feel like now?” the nurse asked.
Liz was quiet for a minute or two. “I know this will sound childish and awful, but they make me mad when they come in here and tell me what’s happening on my unit,” she said. “Sooner or later, they go back to work, and take over what I want to be doing. I have to lie here in this stupid hospital and die!”
Liz’s anger arose from resentment at her former colleagues’ good health, vitality, and open-ended futures. Seeing what was happening, those caring for Liz were able to alter the pattern that fueled her anger. With Liz’s permission, the evening nurse spoke to some of her former coworkers, who had frustrations of their own.
“Liz didn’t use to be like this,” one said. “It’s very hard to spend any time with her; I guess I’ll come back and see her when she’s through being angry.”
The evening nurse explained what she thought was happening, and suggested possible approaches. The next day a friend from the old nursing unit began a lunch visit in Liz’s room with a different comment.
“I bet you get tired of us talking shop all the time,” she said. “What would you like to talk about?”
Liz mentioned her love of gospel music, and they spent an enjoyable half hour singing along with one of her favorite tapes.
Another former coworker, quite comfortable with expressing her feelings, visited later that week. She directly addressed the fact of Liz’s illness.
“I miss you a lot at work,” she said. “I feel so sad about what’s happening to you.”
This led to a heartfelt discussion of their friendship, their mutual sadness, and their expectation that they would meet in another world. Full of hugs and tears, that visit ended on a note of special closeness for both women.
Anger may grow out of fear. Most people have at least some fear of dying. When dying people talk about their fears, many of them say, “I’m not afraid to be dead; it’s what happens before I die that bothers me.” Gentle exploration of such statements often leads to clearer expression of fears: “I’m afraid of what dying may be like. Will it hurt? What’s it like?”
Many people are also scared to discuss their fears of death. Late one evening—-such fears often surface in the middle of the night—-Helen said, “What’s dying like?” but before I could respond added, “No, don’t tell me.” She feared the answer might make it worse, but my simple explanation relieved her anxieties, because what she had imagined was much worse than reality.
Some people can say clearly, “I’m afraid it will hurt, I don’t think I can take a lot of pain.” Others may say, “I’ve always believed in God; faith has always been a very important part of my life, but now I find myself wondering if it’s all true, whether God really will be there after I die. What if there’s nothing after all?”
If a person can’t put his fears into words, or says, “I’m scared of the whole thing!” it may be useful to ask about his experiences with death or find out what his questions are. Different experiences breed different fears and needs. Some people are simply afraid of the symptoms of their illnesses. Knowledge of a person’s history and outlook can aid in exploring these fears. Once understood, they can be discussed with the appropriate person. A doctor or nurse can answer such questions as “What will my physical death be like?” or “Will I suffer?” A priest, minister, or rabbi may be the person with whom to discuss fears related to God. Some patients’ anger grows out of fear that sustenance or medical treatment is prolonging their discomfort, rather than improving the quality of their lives.
Dying made Gordon very angry. Sullen in the company of family and friends, he was belligerent with his doctors and nurses, frequently cursing them—-not at all the way he’d been when he was well.
We looked for patterns. There really was no time when Gordon wasn’t angry, but when did his ire worsen? When did it ease? What precipitated an outburst?
Gordon was angriest with his doctors and nurses, especially when they were giving him his medicines. One day, talking with his priest, Gordon said he didn’t trust medical people; he feared they’d find another treatment and persuade him to try it, rather than letting him die in peace.
“All these people do is prolong my suffering,” he said.
It helped a bit when his doctor said there wouldn’t be any more treatments, but what really helped was a different approach. When nurses brought Gordon his medicines, they would take care to say gently, “These are to keep you comfortable. They’re not to prolong your dying.” Gordon still glared, and never grew warm and friendly, but gradually he became less agitated, the source of his anger quenched.
Anger related to terminal illness has numerous possible sources. Many emotions arise out of the losses people experience as they face dying. Identifying these emotions isn’t always easy, but trying to understand them makes it easier to respond helpfully to the anger.
The easiest way to understand the bargaining aspect of dying is to watch a child at bedtime. One more hug, one more story, one more drink of water—-how inventive they can be as they try to stay up a few minutes longer!
Dying people do the same thing as they try to postpone the inevitable. They bargain with God. If they don’t believe in God, they bargain with anyone they think might have the power to extend life a little longer.
Many bargains revolve around treatments. “I’ll take this chemotherapy,” people say to themselves. “I’ll stick to a healthy diet. I won’t complain, so God will let me live until my grandchild graduates.”
People with AIDS often make deals to spend the time they have left working to stop the epidemic. “I’ll get involved,” they may think. “I’ll take care of others. I’ll teach people how not to get infected. But, God, if I do this you have to let me live longer.” Amazingly, such bargains often seem to work.
Most dying persons’ deals go unnoticed; the bargains usually remain secret. If a dying person does bring up the subject, listen with respect and say something like “Wouldn’t that be great!” or “We’ll help in any way we can.”
A dying person’s depression grows out of grief. Dying people grieve as anyone does for something that is lost. But their grief has two parts; they’re mourning what’s lost already to illness—-health, family role, job, independence—-but also for what will be lost when they die—-personal relationships, life itself, and the future.
Most of us have plans and dreams: children we’ll have, trips we’ll take, books we’ll write, new careers we’ll start. Acknowledging the reality of death’s approach means abandoning these possibilities. Because they’re lost, they must be mourned.
These feelings of sadness and depression should be honored, not dismissed or diluted. To dying people, comments along the lines of “Look on the bright side” or “You’ve had a good life” or “We’ve all got to die sometime” seem like attempts to minimize or make light of their emotional pain. All you can do when they voice these feelings is listen. Often, no answer is needed—-only the attempt to understand.
Mark’s cancer, which everyone had thought was cured, returned so extensively that he had little time to live. He sounded very sad, talking at length about how much it hurt to know he’d be leaving his wife, Joyce, and his young children. It was no consolation that he and Joyce had done all they could to prepare the kids for a future without Daddy. Mark knew how strong Joyce was, and that she had friends to call on for support after he was gone.
He didn’t need cheering up. He didn’t need someone to say, “I’ll help raise your children” or “I’ll try to be there for Joyce after you’re gone.” He didn’t need anyone to say, “Well, at least your cancer isn’t painful, at least you’ve had time to prepare for this, at least you’ve done something worthwhile with your life.”
What Mark needed was to have someone listen to his pain, empathize with his sadness, and share his tears.
Acceptance is a feeling of peaceful resignation that usually doesn’t come to stay until death is very close. It’s common for patients to experience interludes of acceptance and then, in one day, in one conversation, in one sentence, slip into another emotional stage. But eventually death nears, at which time permanent acceptance may arrive. When this occurs—-provided a dying person is comfortable—-she needs little except the presence of one or two important people.
If you are one of these people, you may experience mixed emotions. The peace of another’s acceptance of death can be comforting, but with acceptance comes detachment, a drawing away from others no matter how close they have been. This can be painful for those being left behind.
A year before Max was to retire, he and his wife, Paula, began to plan a cross-country trip. During his last week on the job, Max was diagnosed as having cancer. His retirement began not with a transcontinental journey but with eighteen months of treatments, prescriptions, hospital stays, increasing weakness, and fewer periods of feeling well. Throughout this period, Max raged at life’s unfairness, and swore he’d get better.
“I don’t want to be sick. I want to be looking at the Grand Canyon!” he told Paula. “I don’t want to die! I don’t want to leave you! I want us to have the fun we’d planned!”
But Max never made the trip, and in his last days of life he lay in bed, barely speaking, his communication limited to a loving smile each time Paula rubbed his back or brought his medicine or spooned him a taste of ice cream. He seemed completely comfortable and completely at peace—-in contrast to Paula, who was neither.
“I know I should be glad he’s not suffering, that he’s not in pain, that he’s not fighting anymore,” she said. “But I’m not glad! I don’t want him to be like this—-it feels so awful! It makes me feel so selfish to say it, but he seems to be happy that he’s leaving me! It’s like he’s going and he’s happy to be going and I can’t stand it!”
Max was letting go—-of the trip they’d planned, of his desire for a cure, even of his regret at leaving his wife. He was able to let go because he’d worked through his grief and was ready to die. To Paula this felt like rejection; Max was pulling away from her, it was painful, and yet she felt embarrassed to be taking it that way.
This is not an uncommon reaction. Many people think they should be concerned only with the dying patient’s needs, with the end of that person’s suffering. But we also are concerned with ourselves and our own losses. Paula wanted Max to stop fighting and die in peace, but she didn’t want him to leave her, and it hurt. The most important way to help her was to let her cry, to listen to her grief without judging, and to empathize with her pain.
Most dying people—-as well as their families and friends—-go back and forth among the stages of dying, shifting from anger to denial to acceptance to bargaining to depression—-many times, in no apparent order, and not necessarily in synchronization.
As Julia was finishing six weeks of radiation for extensive and inoperable lung cancer, her family could see she wasn’t getting better, and in fact seemed to be getting worse. She and her husband talked with the doctor, who confirmed everyone’s fears— she had perhaps three months to live. They told their two adult daughters, who lived in the neighborhood, and their son, John, who lived on the West Coast.
When I arrived the next afternoon Julia’s daughter Jane, a former nurse who was providing much of her mother’s care, was weeping in the kitchen.
“It’s so hard to cope with this,” she said. “Last night my mother was saying doctors never know anything, and that she’ll be fine if she can only start eating again. That made Dad really mad; he yelled at her and then stormed out of the house. He didn’t come back for hours, and when he did he’d been drinking. This morning my sister Sally calls to talk about getting in touch with a funeral home, and she can’t figure out why I can’t stop crying. Then my brother calls from California to tell me about some new chemotherapy; he wants to know if Mom’s doctor knows about it. Is this family going crazy, or is it just me?”
We started by talking about her sadness and pain. Her mother’s prognosis was no surprise; in her hospital work Jane had cared for many cancer patients.
“I knew she was deteriorating, so I thought I was ready for this,” she said. “I didn’t think it would be so hard.”
This occurs frequently. Health-care professionals often assume that because they understand what’s happening to someone they love the pain somehow will be eased. But knowledge only provides understanding; it doesn’t diminish pain.
Jane realized she was grieving and depressed, but was grateful that she at least was dealing with reality. She went over the reactions of others in the family.
“Mother’s in denial, but that won’t last long,” she said. “She’s known for a while that she’s getting worse: last week she even told me she doesn’t want to go on like this. Dad of course, will be hopeless. He’s always hiding his feelings behind angry words and drink.”
Then she laughed and pointed to the heap of sodden tissues on the kitchen counter.
“But this generation isn’t doing too well, either,” Jane said. “John’s a real wheeler-dealer. I bet he thinks he can find Mom a deal that’ll fix everything. And Sally--she’ll be calm, controlled, and accepting for a while, then fall apart when something changes.”
When I visited a couple of days later Jane had an update.
“We all changed roles,” she said. “I yelled at Dad for drinking. He and Mom had a long talk about funeral plans; Mom had him call the priest. Father Wheeler came over and they put together a ceremony, and Dad’s been crying all evening.
“Now Mom’s working on a list of what she wants the grandchildren to have,” Jane continued. “She collects music boxes, and she’s tagging her favorites so we know who gets which one. Sally telephoned the doctor to see if that new drug might work, and John called to say he hadn’t slept the last few nights, worrying that he might not see Mom before she died. So he’s coming home this weekend.”
In short order, Jane had gone from depression to anger, Mom from denial to acceptance, Dad from anger to depression, Sally from acceptance to bargaining, and John from bargaining to depression, then acceptance. And these were only the emotions Jane reported or observed. This is a very simplistic example of what happens to family emotions when someone is dying everyone in Jane’s family probably ran the gamut, and it’s possible to experience several emotions at the same time.
Each person involved has a set of feelings; each brings to the situation a history of experiences and a pattern of behaviors.
To some degree, most people die and react to someone else’s death in ways reflecting their usual style of handling of crises. Quiet people remain quiet; angry, controlling people continue to be angry and controlling; people known for taking care of others may be trying to do so with their last breaths.
Struggling for the Proper Response
How do you respond to these feelings? What if the patient is in denial, the spouse is angry, the daughter depressed, the son bargaining, the best friend accepting? The first step may be the hardest: Keep still. Don’t try to help anyone “deal with” denial, anger, and depression in order to achieve acceptance, which many people see as the “correct” response to dying. Acceptance can be more comfortable than the other stages--especially for onlookers--but there is nothing right or wrong or well or poorly adjusted about any of the stages of dying. They’re normal, predictable responses to a process.
Try not to give advice or to look for solutions. Listen. Accept. This is difficult; if you really listen, you will hear pain, even feel it. If only to relieve your own distress, you’ll be tempted to offer advice or to attempt to defuse the anger to say something to avoid the pain and sadness. Unfortunately, there is really no way of doing so.
How deeply will you be involved? If your spouse, child, or parent is the one dying, you may be responsible for most or much of the care, and so will be around most of the time. If the dying person is a friend, you need to think about how much you can be involved. The amount of time you spend with an acquaintance who is ill probably will differ from that spent with one to whom you’re very close. The degree of involvement that seems to work best is the same or a little more than before illness set in, but it’s important to decide consciously how great or little that involvement will be.
If you decide not to visit or to be involved in a friend’s dying, you may find it helpful to do something to recognize what is taking place. Many people find that sending flowers, cards, or a brief note saying, “I’m thinking of you,” allows them to feel they’ve acknowledged the situation. If you avoid thinking about how much or little to see the person, or if you think about it but avoid making a decision, feelings of guilt may cause you stress before and after the death.
“I let her down,” you may say to yourself. “I should have called. Now I’m sorry I didn’t do more.”
Many dying people are lonely, not only because people don’t visit, but also because of what happens when people do visit. Visitors may spend their time with the person wrapped up in idle talk about the weather, sports, or politics. Perhaps because, consciously or unconsciously, it’s intended to do so, their chatter keeps the dying person from being able to speak intimately. A dying person’s world shrinks, narrowing to a few important relationships and the progress of his illness. When dying people aren’t allowed to talk about what’s happening to them, they become lonely, even amid loving, concerned people. They may feel isolated and abandoned, and in turn become resentful and angry.
This is why it’s important to reflect in advance about how to help and what to say.
Not long before her death, Jean wrote, “When the friend who was my main caregiver had to be away for a few days, people told her if I needed anything I was to call them. Several told me so personally. But only one person made a specific offer.
“‘I know you go to church when you’re able to,’ she said. ‘I’d like to take you on Sunday. I’ll be over for you at ten. Don’t worry if you decide at the last minute that you can’t make it. It won’t inconvenience me at all.’
“That call was a real relief,” Jean wrote. “I can’t take everyone up on casual offers that require me to ask for help, but I really appreciate it when someone suggests something they can do-- and does it!”
If you want to help with practical chores, offer specifically rather than generally. Don’t say, “Call me if I can do anything” or “Let me know if I can help.” Not only are dying people too overwhelmed to make lists of tasks for someone else to do, they may not know what needs doing, or may wonder if you’re simply being polite. Instead, offer something concrete.
“I know you enjoy music,” you could tell a friend. “May I bring over some CDs or tapes tomorrow?”
Offer to do the grocery shopping. Propose to vacuum or dust the house. Always give the sick person the option of canceling at the last minute. And by adding, “If that’s not what you want, tell me what else I can do,” you ease the way for the person to make a request.
If you’re the main caregiver, be willing to accept help--the assistance and involvement of others will ease your sense of being overburdened. However, when someone makes a generic offer to help, be ready to say, “Thanks--here’s what I need you to do. . . .” Friends often want to do something but don’t know what; they’ll feel better if you can give them specific assignments, and you’ll have more energy for other things.
Talking About Death
Talk of death is among the most difficult of issues. You may worry that you’ll say something that will “make it worse.”
People often think that if they mention death they’ll upset someone who is ill. Many worry that if they try to say anything about something as sad as a friend’s dying they may break into tears and cause the dying person to do so as well. The control that goes into maintaining such composure is sometimes perceived as a display of indifference.
Sonia complained about her children’s efforts to be very brave and calm.
“They should cry!” she said. “After all I did for them, they should be sorry I’m dying!”
Her son was taken aback.
“But, Ma, we didn’t want to make it worse for you,” he said. “You know you’ve never been able to stand seeing one of us upset; you always cried with us.”
“I thought it was because you didn’t
care!” she said.
Remember that not saying anything gives the appearance of not caring. Many factors figure in the depth and intimacy with which you and the patient discuss death and dying. If the person is trying to believe the diagnosis, learning to live with the illness, and preparing for death, you may conclude that it would be helpful to approach the subject, and often it is.
However, the person may not be ready or have the energy to talk about death. Perhaps she has someone else to talk with, wants to spare you, or simply doesn’t want to talk about it. Don’t force the topic onto anyone, but don’t shy away from it, either.
One way to begin talking about death is to let the dying person know of your interest. If you don’t know whether the person will recover, asking, “Are you going to be all right?” or “Can you tell me what’s happening?” may help you both get started. The first conversation usually is the most difficult; once you’ve broken the ice it becomes a little easier.
Show that you’re willing to talk, then let the conversation develop. You might begin with a simple comment: “I’m sorry to hear that you’re so ill,” or “I really feel sad when I think about what’s happening to you.” Wait for a response. Listen. There is no one right thing to say, although it’s never wrong to speak of your love and concern.
Don’t worry about saying or doing the “wrong” thing. Most of us have said a few wrong things, and good relationships haven’t suffered. Sick people usually tolerate mistakes made in honest, loving attempts to help.
What’s often harder to forgive whether for the dying person or in one’s self is the failure to do or say anything. Dying people need the company of those who will listen, those willing to understand their situations, those who continue to offer love and friendship in the face of death.
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