Grief is an integral part of our human condition. All of us have lost or will lose someone we love beyond all telling. Our social nature makes us want to bond and become attached to others. “‘Tis better to have loved and lost, than never to have loved at all.” For how many centuries has this saying been a guiding insight into our human relationships? Grief is the price of those attachments of love that we make in our lives. How we deal with it has a lot to do with how we can put the loss into a broader perspective that allows us to continue to live despite the engulfing void in our lives.
Hearts heal faster from surgery than from loss.
-Ellen Goodman, Boston Globe, January 4, 1998
She died, and the person I was died, too.
-A widower of seventy, following his wife’s death
Life must go on; I forget just why.
-From “Lament” by Edna St. Vincent Millay
Remember me, when you can’t go on;
Think of me, when all hope is gone.
When you’re all alone and no one seems to care,
I will always be there.
For I am everywhere, and I have always been here;
Since time began, I am.
And I will never leave you, for I am your friend.
Just look inside your heart, take my hand.
-“Remember Me,” lyrics and music by JoAnna Burns-Miller, 1999
Grief demands expression of powerful emotions. We need an opportunity to tell and retell events, stories, and memories, all of these but reflections of our deep love for the person who has died. This is why it is so much harder when you have no one to talk with about how you are feeling. It’s also true that some people are more vulnerable than others in the throes of bereavement and have more trouble overcoming their grief.
This book, devoted to the human side of cancer, is at its heart about loss, the threatened or actual loss of health and life. But it also about surviving the loss of a beloved person who has died of cancer: spouse, parent, child, sibling, friend. “How do I go on after losing someone whom I loved so deeply and who mean so much in my life?” I hear this asked, sadly, all too many times. One in four families is touched by cancer each year. Indeed, cancer has become the leading cause of death in this country as heart disease mortality has diminished. This chapter describes the pain of grief and of the bereavement that follows the death of someone close.
Those who have experienced a significant loss and struggled to go on will recognize all too easily the feelings and emotions brought on by grief; I hope the discussion and suggestions for coping will be helpful. For those who have not yet been touched by loss, the chapter may not seem so relevant. But for readers who have a loved one who is ill and whose life is threatened by cancer, this chapter describes the feelings of grief, what is known about the human process of grieving, and offers some approaches that may help.
Grief before loss
Death from cancer is often preceded by a lengthy period in which both the person who is ill and the healthy caregiver recognize the likely fatal outcome, while at the same time trying to deny it. This period is sometimes called a time of anticipatory grieving. However, no matter how clear the outcome is, and how prepared one believes one is, the actual death somehow comes as a surprise: “I didn’t expect it so soon.” “I was still hoping for the best.” “I can’t believe it’s really happened.”
Grief after loss
The first hours and even days after death are often recalled later as: “I was in a daze; I can’t even remember it.” “I was so numb I had no feeling at all.” “I went through the funeral without even realizing what was happening.” “I felt so unreal, as if I was watching a movie.” “For days, my heart felt like a piece of stone.” This is a kind of benign temporary denial of the painful information as the psyche tries to absorb the catastrophic information.
But the numbness is interspersed, in this acute stage, with waves of intense grief, of crying and sobbing, that come on several times a day, occasioned by a sympathetic word, a hug of affection from a friend who understands, or seeing some object that suddenly brings back the gravity of the loss. Caught up in a wave of grief, you become distraught, crying without easy control, and overwhelmed for a period of minutes with trouble regaining emotional control. Sudden vivid memories come back, coupled with a sense of unreality, disbelief, and panic, swelling to an overwhelming feeling that “I just can’t go on.” These waves are so difficult to bear that you try hard to prevent them by avoiding contact with people. However, the act of sharing the loss with another, as painful as it is, is actually helpful because it encourages talking about the loved one and sharing memories, which makes the loss real and reduces the feeling of “maybe it isn’t so.” It also celebrated the life of your loved one.
A panicky, anxious feeling accompanies the sadness and helplessness and makes it hard, if not impossible, to carry out daily tasks. You may find yourself wandering aimlessly around a room picking up objects without thinking or pacing in agitation with the thought, “I can’t live like this.” You may avoid activities that brought you pleasure before, particularly those that remind you of your loved one. For example, you may not want to listen to music that was previously a shared source of enjoyment because it makes you feel sadder. These feelings are all intensified during the waves of overwhelming grief described above.
Along with psychological distress, grief disrupts normal physical function. The abrupt change in your pattern of living-caused by the absence of a key person in your life-disrupts the brain and biological rhythms (the body’s normal twenty-four-hour rhythm of function), especially of the nervous, hormonal, immune, and cardiovascular systems. These physiological changes lead to the common physical symptoms of grief. For example, it may be impossible for you to concentrate, to keep your attention on any topic. Sighing respirations are common, and choking sensations occur often with crying. You may feel weak and profoundly fatigued. Sleep may be difficult, ranging from fitful to impossible. Food has little taste;it “sticks” in your throat. Weight loss is common, and you may look pale and ill, in addition to looking profoundly sad. Strikingly, many of these physical consequences seen in human beings are similar to reactions observed in animals. For example, Dr. Myron Hofer, a psychiatrist and researcher, has witnessed similar effects in infant mice when their mother is taken away from them.
During this stage of acute disorganization, you may feel distant from others and want to be alone. Yet you must go through the cultural rituals that follow a death: the wake, sitting shivah, the funeral, and the burial or cremation. These rituals around death developed over the centuries for a good reason: They encounter the tendency to isolate oneself. They ensure that you are surrounded by others who care and who share the loss. For several days, you may rarely be left alone by family and friends, who wish to give you comfort with sympathetic words and gestures.
This complex picture usually persists for about six weeks. Dr. Erich Lindemann, chairman of Psychiatric at Massachusetts General Hospital in the 1950s and with whom I studied, carried out the first study of normal grief. In 1941, a tragic fire in the Coconut Grove nightclub in Boston trapped about five hundred young people inside. Most died or were badly burned. As the staff of local hospitals attempted to give medical care and comfort to survivors and families, Lindemann documented the survivor’s symptoms, their grieving, and its outcome. He found that after six weeks, the aimless, disorganized days and nights with preoccupying thoughts of the deceased, including hearing them speak or seeing them in a fleeting dream or dreamlike state, began to diminish. A normal pattern of daily activity began to ensue. However, there was a wide variation in timing, in severity of symptoms, and in recovery.
This study was followed by those of many other outstanding researchers, who told us that we have held a lot of myths about grief that just aren’t true:
- Myth: Grief should be over in a year.
Fact: Grief lasts much longer than a year for many people.
- Myth: Grief goes through stages to final acceptance.
Fact: There are no stages of grief and, often, no acceptance of the loss.
- Myth: Life should go back to normal.
Fact: There is no “recovering” what is gone for many, but simply carrying on with a radically altered experience of life.
We know that when grief befalls a parent after the death of a child, or a spouse after the loss of a mate of many years, particularly after a long illness, there is apt to be prolonged grieving, and the loss is never fully over. Unquestionably, the death of a child is viewed as the most painful loss: “I’ve not only lost my child, but my future.” For many people, the loss of one’s mate or partner is equally traumatic. And then there are the losses made all the harder by a long-standing pattern of interdependence, such as sometimes exists between parent and adult child, and between siblings.
I saw Mary after her husband of forty-nine years died of prostate cancer. They had a very close relationship and had woven a pattern of shared responsibilities typical of fifty years ago. She took care of the home and had raised the children, and he was the breadwinner and keeper of their finances. She participated little in these areas because it didn’t seem important. During his illness, Bill tried to tell Mary about their financial affairs and to show her what she would have to do when the time came for her to take over these matters. She refused to listen. In the final months of his illness, Mary took total care of Bill, and this took all of her time. She gave up seeing her friends, and her only social contacts were telephone calls and visits from the children and grandchildren.
Mary found Bill’s death hard to believe at first. She went through the religious services without showing great emotion and accepting comfort from others. The reality of the loss did not hit her until her friends and children left, and she was finally at home alone. She became preoccupied with thoughts about Bill’s illness and worried that she hadn’t done enough. She ate poorly, did not want to cook, and lost weight. She cried all the time. Her family became concerned about a possible suicide risk when she told her daughter, “I really don’t want to live. I’d rather join him in the cemetery now.” At her daughter’s insistence, Mary agreed to accept help.
Sessions over six weeks were devoted to her going over and over the events of Bill’s illness and death, and her concerns about the last moments: “Maybe, if I had called the doctor a day earlier, he might have lived a while longer.” She felt guilty that she hadn’t done enough. It was difficult for her to let go of these feelings and recall the happy memories of Bill and their long life together. When she talked about her concerns with her children, they tried to help by saying, “Stop talking about it. It’s only making you feel worse.” The effect of their response was to isolate her even more.
As we continued to discuss her loss, Mary was able to eat and sleep better and to socialize some. One year after Bill died, she was functioning better and had found an accountant to manage her affairs. However, she was still grieving and living much of the time preoccupied with memories of her life with Bill. Special family parties were so painful that she wanted to avoid them: however, for the sake of the children, who very much wanted their mother to be with them, she forced herself to go. She did take up the game of bridge again, and reconnected with her old friends. She attended a group for widows who shared their similar feelings. A year and a half after Bill’s death, Mary realized that life would never be the same, but at least now she could continue to live.
Grief following an unexpected death
While cancer is a disease in which people often have time to prepare for a loss and to say good-bye, that isn’t always the case. Sometimes there is no time for either the person who is ill or the loved ones to absorb what is taking place in a whirlwind of overwhelming medical problems and failed treatments.
Hans was a diplomat in his seventies, happily married to a woman twenty years his junior. He had carefully planned how his wife would manage when he died first. Neither he nor his wife was prepared for her diagnosis of acute leukemia, which did not respond at all to treatment. They both struggled with the reality, but the time was too short to grasp fully the true nature of her fatal decline before her untimely death a month later.
Hans was devastated and required help from friends to organize her funeral and burial back in Germany. On his return to the United States, he still could not believe his wife had died. “I imagine she is away on a trip.” His grief was acute, and he cried and paced aimlessly for days. Unable to go out with friends, he stayed home and went over and over the monthlong illness and what else might have been done. He tortured himself for not seeking an experimental therapy in Boston. Friends encouraged him to come to see me.
We talked at length about the enormity of his loss. He had had a clinical depression twenty years earlier, and after three months, we agreed he might benefit from medication.
He also agreed, reluctantly, to join Dr. Sherry Schachter’s grief support group for people who have lost a loved one to cancer. In the group, he was able to talk more easily with people who understood his loss. Over the next two years his outlook improved.
Grieving over years
The American way . . . has turned grieving into a set process with rules, stages, and of course, deadlines. We have, in essence, tried to make a science of grief, to tuck messy emotions under neat clinical tables—like “survivor guilt” or “detachment”
So whatever our national passion for emotional efficiency, for quality-time parents and one-minute managers, there are simply no one-minute mourners.
-Ellen Goodman, Boston Globe, January 4, 1998
The myth exists in our culture that there is an acceptable time period to be set aside for grieving, usually one year. But this ignores the reality of human nature. Each person is unique: each loss is unique. The expectation of a “deadline” beyond which you no longer grieve is just plain wrong and add to your burden. This amounts to blaming the person who is grieving for his or her suffering, rather than trying to understand it-another form of “blaming the victim.”
Parents know full well that they will never “get over” the death of their child. They hold the memories far too dear to let go. Life does go on for them, but in an entirely different way. I was honored to speak at a meeting of the organization In Loving Memory, which is dedicated to providing comfort and support for parents who have lost their only child or all their children. Over two hundred people gathered for this remarkable meeting in Vienna, Virginia, and shared memories of their children with others who knew exactly how they felt. Each wore pictures of their children, shared memories, and listened to discussions of the many faces of grief. It felt like a celebration of their children’s lives, in a setting that made this possible. Many parents are still grieving years later, and some never fully recover or “put the past behind them.”
In 1998, I took part in a TV segment on 20/20 about grief. The personal story about Rob, a young man whose father had died of cancer ten years earlier when he was a teenager, touched me.
Rob and his family were interviewed on the day of his graduation from medical school. The day itself was bittersweet because it would have meant so much to his father, and the celebration was clouded by his absence. Rob tells of how earlier feelings of loss returned, for him and his family, on that graduation day, although it was a full decade later. He said that, for him, grieving was the only way of holding on to his father. Painful, yes, but also evidence that the tie was unbroken and that his father still was in there hearts.
There are similarities between the myth that there are stages in grieving (from denial to acceptance) and the notion that patients pass through psychological stages in their experience of a cancer illness. All the stages may occur during grief, but not in a set sequence and surely not in a way that leads us truly to accept the death of someone who was an intimate part of our life.
Dimensions of grief
How we grieve, like how we confront a serious illness, is influenced by the attitudes of the society at large, as well as those of our own personal traditions. We see over and over at Memorial that people from certain ethnic groups are apt to be more demonstrative in their grief. The other extreme is the “stiff upper lip” that is expected in some cultures un which it is considered a sign of weakness to cry or show emotions in public, no matter how distraught one is. These attitudes and expectations can cause us to suffer in silence. We can feel like we’re “doing it all wrong,” when in fact there is no right way.
Social attitudes often differ among families regarding talking about death with young people. Children and teenagers have many questions, like “Where do people go when they die?” Some families answer the question by saying, “Grandma is in heaven” or “with God” or “alive in your heart and memory and feelings.” It is often best to speak to children about death as straightforwardly as you can, within the context of your own beliefs and traditions, to help them to go on.
Several emotions that accompany grieving are important because they can come as a surprise. If you are prepared for them to arise, they may be easier to deal with.
A major part of grief in its early stages is an obsession with the last days of the illness and “why” it happened, as illustrated earlier by the experience of Mary. Thoughts go around and around as you look for ways things might have been different, might not have ended in death. “What else could I have done?” “Did I make a mistake?” “Why did I go home that last night and not stay at the hospital?” “Did the doctor make a mistake?”
Vivid memories of the last days come back repeatedly, such as how your loved one looked, so pale and ill, sometimes in pain. People say, “Why can’t I just remember the good days and forget the last horrible ones? But I can’t get beyond how she looked that last week.” This preoccupation with wanting to clarify the details of the illness and the causes of death often is connected with the feelings of self-blame and guilt, that somehow you could have done better or even have saved the person you mourn.
The present method of delivering health care contributes to this dilemma in a new way. When a person becomes critically ill, it often becomes important to know whether or not the patient wants to be resuscitated in the event breathing or the heart stops. In the absence of an advance directive in which the ill person has indicated his or her wishes in this regard, the next of kin or health proxy-usually a spouse or partner, a parent, an adult child, or a sibling-must be asked whether the patient is to be resuscitated. The decision to resuscitate may lead to the patient’s being placed on a respirator with continued discomfort and pain; this decision may prolong dying.
Sometimes, saying no (Do Not Resuscitate