Grief and Bereavement

Grief is quite common and is the normal internal feeling one experiences in reaction to a loss, while bereavement is the state of having experienced that loss.

There is an appointed time for everything, and there is a time for every event.

Whatever our beliefs may or may not be as to a specific "appointed time," each of us knows the inherent truth of the well-known Bible verse. One day, death comes to us and to everyone we love.

Mere knowledge of this inevitability does not lessen our suffering. Poet Maya Angelou wrote, "I answer the heroic question, 'Death, where is thy sting?' with 'It is here in my heart and mind and memories'" - a reflection that death takes from us the physical presence of people who are precious, with effects that often bring piercing pain and indescribable depression.

Although the walk through the valley of the shadow of death is the toughest part of life for the human spirit to endure, most of us move beyond the shadows and once again enjoy the sunlight. Let us gather insight into some of the feelings and experiences you may have in your walk through this valley of shadows, and let us offer hope that sorrow will not be your constant companion for the rest of your years.

Loss causes pain. Losses may be both actual and symbolic.

• Actual loss is the death of a person we love and the deprivation of intimacy that flowed from our relationship with him or her. We lose companionship, laughter, sharing, and hugs.
• Symbolic loss includes life events that are not yet and never will be: high school graduations, weddings, and births.

Pain may be experienced from both actual and symbolic loss; the latter may cause pain several years after a loved one has died.

• Grief is our personal experience of loss. Grief is multifaceted and can literally affect all areas of our life: spiritual, psychological, behavioral, social, and physical. In grieving, we come to terms with what has changed our life and how our life has changed. Grieving is tough, and we must work to get through it. Doing that work is painful, but absolutely essential, because grief has correctly been described as the anguish that permits hope.
  • All grief is not alike. When we lose someone we dearly love, and with whom we have shared a good life, deep pain results. Although it hurts tremendously, this type of pain is actually the best type to experience when someone dies, because it reflects the immense role that person played in our life and the huge hole left by his or her absence. Of this, author C.S. Lewis, who lost his wife to breast cancer, said, "Always remember, the pain now is part of the joy then."
  • We may feel another type of pain upon the death of a loved one -- the pain of opportunity now lost forever. Harriet Beecher Stowe wrote, "The bitterest tears shed over graves are for words left unsaid and deeds left undone."
  • Sometimes pain is not the predominant emotion in grief. When someone we love dies after a long and painful illness, we may primarily be thankful that his or her suffering has ended, although we are in pain.
  • Finally, while death always entails loss, that loss does not always result in pain. Of death coming at the "right time," Julie Burchell observes that "tears are sometimes an inappropriate response to death. When a life has been lived completely honestly, completely successfully, or just completely, the correct response to death's perfect punctuation mark is a smile."
• Mourning is a public expression of our grief. It is the societal process by which we adapt to loss. Examples of mourning include funeral and memorial services, flying flags at half-staff, temporarily closing a place of business in honor of the person who has died, and many other rituals that help us feel that we are doing something to recognize our loss.
• Bereavement is the period after a loss during which mourning occurs (usually a relatively brief time) and grief is experienced (often for a much longer time).

When someone we love has a terminal illness, we must find a way to live with dying. Living with dying involves emotions that may be felt, decisions that must be made, and things that should be done.

More than two decades ago, University of Chicago psychiatrist Elisabeth Kübler-Ross, MD, identified various stages that people who are dying may experience. Their families quite often experience the same emotions. The stages do not necessarily progress in the order listed. Furthermore, the dying person, and those who love him or her, may go back and forth among some or all of these stages. Knowledge of these stages may help us understand the dying person's reactions -- and our own.

1. Denial: It is almost impossible to believe that our own or a loved one's illness will result in death. We call for a second opinion (generally a good idea) in the hope that a mistake has been made. Sometimes the denial is not of the illness but of its lethality ("maybe everybody else, but not me!").
2. Anger: Once past denial, anger often sets in. The anger may be specific or diffuse: anger at the doctor for making the diagnosis or not making it soon enough; anger at a spouse for "arguing so much that I just had to smoke, and now look, I have lung cancer, and it's your fault"; anger for not taking better care of oneself; anger at healthy people because "they'll see many more sunsets and spring days and Christmas Eves, and I won't"; and, especially if the individual has tried to lead a "good life," anger at God for "not keeping His part of the bargain." The ill person, or his or her family, eventually may decide that anger accomplishes nothing, and the anger may fade.
3. Bargaining: Promises are frequently made to others, in the hope that giving voice to them guarantees their fulfillment. The promise might be to be here for a bar mitzvah, the birth of a grandchild, or the graduation of a daughter from medical school. An attempt often is made to strike a bargain with the One who is thought to have ultimate control over life and death. We tell God that "I will change my life, or give to mission work, or reach out to try and help people more." Sometimes, the bargain is for a reprieve -- for life free of disease. Other times, it is a limited bargain: "Please just give me enough time to..."
4. Depression: When it becomes clear that bargaining will not change the inevitable, depression may set in. Two types of depression may be experienced. The first is over things we used to do that can no longer be accomplished: dancing, duck hunting, lifting the kids onto our shoulders, and making love. This is the pain of what used to be but will not be again. The other face of depression is over things that never will be -- for us: family Christmas dinners, vacations at the beach, knowing the kind of person a child or grandchild will become. All these things will happen but without us.
5. Acceptance: The stage of acceptance may be reached at some point before death. Acceptance is not a happy time or a sad time. It just is.
6. Anticipatory grief: The family of a terminally ill person often experiences anticipatory grief. As its name implies, this is a grief reaction that occurs in anticipation of an impending loss and is the process by which family and friends come to terms with the potential loss of someone significant. Anticipatory grief has many dimensions, including anger, guilt, anxiety, irritability, sadness, feelings of loss, and a decreased ability to perform usual tasks. The most effective response to anticipatory grief is to acknowledge it openly and to talk about it.

As these stages come and go, there is, for most people -- irrespective of religious beliefs or absence of same -- a search to fulfill a universal need: to find meaning in life.

It is essential to discuss the medical steps that should and should not be taken as the illness progresses. In the U.S., the most common approach to shared decision-making is discussions between the doctor and the person who is ill -- and, under most circumstances, his or her family. The patient, exercising autonomy, makes the choices about medical care, based on the medically appropriate options. Patients from some cultures, however, prefer "family-centered" decision-making, rather than " patient-centered." In the family-centered style of decision-making, medical choices are primarily the province of the family, whose choices "serve the good of the whole family, which includes but is not limited to the patient."

A key factor in end-of-life decision-making is the goal of treatment.

The goal of treatment is either curative, supportive, or comfort care. In a terminal illness, a cure is not possible. Early in the illness, it may be appropriate to actively support vital functions to "weather a passing storm." Such support may include the use of antibiotics for infection, temporary use of breathing machines, and other interventions.

In the last stages of illness, such steps only prolong dying, and it may be more appropriate to forgo them and to institute aggressive care only to provide comfort and to relieve pain and suffering. These decisions, which most often should be mutually agreed upon by the ill person and the doctor, represent the values and desires of the ill person in light of the medical facts.

• Advance directive: Because not all questions can be anticipated, this is also the time for the ill person to complete an advance directive (if one is not already in force), in which he or she may designate someone to make decisions about health care if the ill person is not capable of doing so.
• Hospice: Another important consideration is the advisability of using the services of a hospice during the last six months of life. Most people who use a hospice report a wonderful experience with the hospice staff and their attention to caring for the "whole person." Yet another advantage of hospices in the counseling available not only to the person who is ill but also to his or her family, both before and after the person's death. This may be of immeasurable assistance in dealing with grief in anticipation of, as well as after, the loss. Hospice services are available not only in actual hospice facilities but also as "home hospice," in which the hospice agency provides care services in the person's home.

• Nothing left unsaid: The period of a terminal illness allows the opportunity for nothing to be left unsaid when death does come. There may be "issues" to be discussed for the first time. There may be expressions of thanks and gratitude that have not before been stated -- in other words, things that should have been talked about but were not.
• The perfect moment: Sometimes, we procrastinate, waiting for just the right moment. In their book Medicine as a Human Experience, Rosen and Riser write of another doctor who had to tell an 8-year-old boy that he was dying of leukemia. They quote her as saying, "Why had I waited so long, making excuses to myself that I needed the perfect moment? There is no such thing as the perfect moment. We make all our moments, and by the truth and love we bring to them, we make them perfect."
• Things to be said: For many of us, at least three things have remained unexpressed for too long a time: I love you, I forgive you, and please forgive me. Although living through the terminal illness of someone we love can be excruciatingly painful, this forced necessity to talk through things -- instead of putting them off -- is one of its blessings.

Grief is a process. Although we would wish otherwise, grief cannot be bypassed, hurried, or rushed; it must be allowed to happen. We do not go through grief and come out the other side the same as we were before the loss. Grief changes people.

Five stages of grief have been identified. Nothing is absolute, because each person's grief is unique, but listed here are characteristics of the stages that many people experience.

• Shock and disbelief: This initial phase, which may last from a mere few seconds up to six weeks, is marked by numbness, disbelief, and, often, alienation from others. The loss may be intellectualized and dealt with on a "rational" level, as opposed to a "feeling" level. This is the stage many people are in at the time of the funeral.
• Awareness: This next stage is an emotional and suffering phase that resides in the heart. At the same time that the chemicals (for example, adrenaline) released in response to the stress of our loved one's death are beginning to decrease, and the support of friends is lessening, the impact of the person's loss is beginning to be truly realized: the lonely bed, the lack of someone with whom to talk. The onset of this stage occurs two to four weeks after the death, and the pain we experience continues to increase until it peaks about three to four months after the death. Typically, this is the longest phase. Strong emotions, such as anger, fear, and guilt, may be experienced.
  • Individuals may experience uncontrolled bouts of weeping, as reflected in the words of someone identified only as Colette, who said: "It's so curious: one can resist tears and 'behave' very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window...or one notices a flower in bud only yesterday has suddenly blossomed...or a letter slips from a drawer...and everything collapses."
  • The full recognition of the implications of our loss can take years. Speaking metaphorically, Mark Twain wrote: "A man's house burns down. The smoking wreckage represents only a ruined home that was dear through years of use and pleasant associations. By and by, as the days and weeks go on, first he misses this, then that, then the other thing. And when he casts about for it he finds that it was in that house. Always it is essential -- there was but one of its kind. It cannot be replaced. It was in that house."
• Depression: We desperately want everything to be the same as it was before the loss. This unachievable desire, simultaneously so natural and so understandable, may elicit depression at around six months.
• Reconciliation and recovery: The final stage resides in the gut. For most of us, it is several months before we overcome the most severe emotional stress, and it takes at least a year to work through the grieving process. We must weather the "first" everything (for example, birthdays, holidays, date of the loved one's death) without the person who has died.
  • As time passes, and as we allow ourselves to work through our grief, we begin to reconcile the loss and to engage in rebuilding our lives. The swings of emotion slow, and a scar is formed, lessening the pain. Our focus shifts from death, and life begins anew. Reaching this stage does not mean we will never grieve again but that the grieving feelings no longer disrupt our lives or block our capacity for growth, discovery, and joy.
  • A caution, however: After a significant loss, we are changed forever; thus, the "new normal" is not like the "old normal." It has been suggested that we should attempt to reach an accommodation with our loss, rather than an "acceptance" or an effort to "recover."

What about children and grief?

We should be open, honest, and gentle when children lose someone they love. Do not force them to attend a funeral if they do not want to, but give each child a chance to devise meaningful family rituals to observe the death, and have the child participate in some service or observance (for example, lighting a candle). Allow each child a chance to talk at family meetings, which should be held perhaps once a week. Ask the child about guilt, which is common after a death ("I said I wanted my brother to die after he took my crayons, and he did!"). Do not be afraid to cry in front of your children. When a child dies, parents commonly are so mired in their grief that they do not or cannot reach out to their other children to support and comfort them. As tough as it is, parents must be there for surviving children.

• Some factors can interfere with the resolution of grief. Try to avoid these if at all possible:
  • avoiding emotions,
  • overactivity leading to exhaustion,
  • use of alcohol or other drugs,
  • unrealistic promises made to the deceased,
  • unresolved grief from a previous loss,
  • judgmental relationships, and
  • resentment of those who try to help.

• Some situations are unique in their challenges and may necessitate professional help.
  • One such situation is the death of a child. Such an event is just against the natural order of things, and it is a type of grief that we may be unable to truly work through to an accommodation.
  • Another such situation is the murder of a loved one. Trauma such as murder complicates grief, adding a whole new dimension to our bereavement, one that we are reminded of with each news broadcast.
  • Disenfranchised grief occurs when we experience a loss that cannot be openly acknowledged, publicly mourned, or socially supported. An example would be the loss experienced by someone who was having an affair with a married person who dies. Because the usual opportunity for mourning is not available, disenfranchised grief is hard to work through and may be prolonged.
  • Complicated grief is delayed or incomplete adaptation to our loss. In complicated grief, there is a failure to return, over time, to pre-loss levels of functioning, or to the previous state of emotional well-being. Grief may be worse in younger people, women, and people with limited social support, thus increasing their risk for complicated grief. Counseling from a minister, grief counselor, family physician, or mental-health professional may be required to effectively deal with complicated grief.

Grief may cause significant physical symptoms and psychological distress.

• Physical manifestations of grief
  • loss of appetite
  • changes in weight
  • trouble falling asleep or staying asleep
  • fatigue
  • chest pain
  • headache
  • palpitations
  • hair loss
  • gastrointestinal distress
• Risk for health problems and death: Grieving people are at increased risk for health problems and death.
  • Physical complaints such as changes in weight, chest pain, and palpitations, while often seen in the bereaved, nevertheless should be discussed with a doctor since they may be due to other conditions.
  • Chest pain that is alarming; that radiates to the neck, jaw, arm, or back; or that is sudden in onset, should prompt an immediate call to 911 for emergency medical services.
  • Similarly, seek immediate help for chest pain or palpitations associated with shortness of breath, nausea, sweating, lightheadedness, weakness, or profound fatigue.
• Psychological manifestations of grief
  • sadness
  • anxiety
  • helplessness
  • emotional swings
  • irritability
  • apathy
  • disbelief
  • impaired concentration
  • lowered self-esteem
  • hallucination that the deceased person is present (visual or auditory)
  • feelings of unreality, numbness, denial
  • searching for the deceased
  • flashbacks
  • individuals may progress and then suddenly feel worse, without an obvious trigger
• Suicidal thoughts
  • Thoughts of suicide occur in up to 54% of survivors and may continue up to six months after the death.
  • Although it is common to have such thoughts, individuals should talk with a doctor or a mental-health professional.
• Depressive illness
  • Depressive illness, not to be confused with situational depression caused by the loved one's death, occurs in 17%-27% of survivors during the first year after a death.
  • Symptoms of depression typically begin after one to two months of bereavement, last for several months after the loss, and are constant.
  • Depressive illness is associated with prominent thoughts of suicide, profound changes in appetite or sleep, or substantial decreases in function. The help of a mental-health professional is needed.

"It isn't for the moment you are struck that you need courage, but for the long uphill battle to faith, sanity, and security," said Anne Morrow Lindbergh. Each of us must work through our grief in our own way. We deal with losses as individuals, and ways of so dealing vary widely. We must each deal with grief at our own pace, appreciating that there will be ups and downs, and that healing takes time. You will know when you are getting better.

• Helpful tips
  • Allow yourself to experience the pain of grief.
  • Having someone to share grief with may well be helpful if you are the type of person who likes to talk. You may feel comfortable in confiding feelings to a friend, family member, member of the clergy, or health professional.
  • A support group may help, even though you may feel worse after the first sessions. Do not stop attending.
  • Read uplifting books or articles.
  • Keep a diary or journal.
  • Do not hesitate to talk about the person who died, and encourage others to talk of the person who died.
  • You may wish to talk out loud to the person who died.
  • Avoid seeking relief through alcohol, smoking, medications, or drugs.
  • If you are having trouble sleeping, get up and read or, if possible, take a nap during the day to catch up on your much-needed sleep.
  • Eat a balanced diet.
  • Try to get into a regular daily routine.
  • Begin or continue exercise.
  • Employ what works for you in returning to normal routines.
  • Anticipate problems and take preventive steps (for example, during holidays).
  • Get help in the following instances:
    • You have continued difficulty sleeping.
    • You have substantial weight gain or loss.
    • You experience prolonged emotional distress (> six months).
    • You are having suicidal thoughts.
  • Time is your worst enemy and best friend. Although you cannot overpower grief, you can ride its waves until you reach the shore.
  • Recovery is under way when you have healed well enough to reach out to others who are grieving to give them support, share your experiences, discuss your coping techniques, and give them hope.

The bereaved are often alone and isolated because they fear doing or saying the wrong thing. Do not let that happen. How can you help?

• Be yourself.
• Take action (for example, call, send a card, help with practical matters).
• Be available after everyone else gets back to their own lives.
• Do not be afraid to talk about the loss.
• Talk about the person who died by name.
• Do not minimize loss; avoid clichés and easy answers.
• Be patient with the bereaved; there are no shortcuts.
• Encourage the bereaved to care for themselves.
• Remember significant days and memories.
• Acknowledge your limitations.
• Do not try to distract the bereaved from grief through forced cheerfulness.
• Guilt is common and often does not have a factual foundation. If someone wants to talk about it, encourage that, and do not attempt to stifle or explain guilt away.

Remen and Rabow present other approaches that have proven helpful to people coping with loss, along with those that are unhelpful.

What helped

• Let me talk about it as long as I wanted to
• Told me everything I was feeling was normal
• Let me cry
• Cried with me
• Hugged me
• Sat with me and listened
• Called me back again
• Was physically and emotionally present in the moment
• Held my hand
• Said "I am sorry" and meant it
• Said "whatever your choice, I will support you"
• Talked to me the same way after my loss as before
• Made food for me
• Listened and listened
• Brought their dog

What does not help

• Tried to problem solve
• Changed the subject
• Gave advice before they knew the whole story
• Talked about themselves and their losses
• Said "call me if you need anything"
• Got me to take care of their feelings about my loss
• Didn't acknowledge my perspective
• Explained how I caused the loss
• Told others about our conversation without asking me
• Said this will be a great learning experience
• Gave advice without being asked
• Told me "don't cry"

What can we learn when the death of someone we love brings us face to face with our own mortality?

Gandhi advised us to "live as if you were to die tomorrow." In like manner, Christian Furchtegott Gellert said, "Live as you will have wished to have lived when you are dying."

• How differently would you live your life if you knew that tomorrow would be your last day on the face of the earth?
• What would you make sure you said? To whom would you have said it? Who would you make sure to call, write, or see?
• What would you have wanted to do?

Because no one knows the rate at which the grains of sand are falling through the hourglass of life, it makes sense -- each day -- to do and say those things that we would have wished we had done when our "appointed time" comes.