15.01 Grief, Mourning, and Bereavement; Introduction

15.02 Anticipatory Grief

15.03 Grieving as a Normal Process

15.04 Responsiveness to Understanding

15.05 Timing

15.06 Stages of Grief

15.07 Symptoms of Grief

15.08 Grief Versus Depression

15.09 Grief Therapy

15.10 Shadow Grief/Grieving by Others [Burn-out]


15.01 Grief, Mourning, and Bereavement; Introduction

Grief has been described as "an intense emotional and physical reaction to a loss, real or imagined, sudden or anticipated." Although in this book we will speak of grief as it relates to the loss of a loved one, the same term can be applied to many other losses, such as the loss of mortality (being diagnosed as having a fatal disease), the birth of an impaired child, a debilitating stroke, infertility, disfiguring injuries, loss of status, or esteem. Although the terms "mourning" and "bereavement" may be used almost interchangeably with "grief" or "grieving" when dealing with the loss of a loved one, the term "mourning" is more generally used to describe the social expression of grief and the terms "bereaved" and "bereavement" to describe the individual who is suffering the loss and the overall process of grief and mourning respectively.

Unlike psychiatric illnesses which share many of the symptoms of grieving, grief and mourning are considered normal, inescapable, and beneficial mental processes through which the survivor reconciles the loss of a loved one and breaks the emotional ties to the deceased. In fact, failure to mourn is often considered an invitation for ongoing pathologic forms of grief produced by the bereavedís failure to separate from his or her loss so as to go on to new activities and relationships. Looked at in this way, grief and mourning become a difficult and painful, but psychologically necessary, task. As Sigmund Freud claimed, only by working through the grieving process can the bereaved be set free to invest emotional energy in new directions.

Many authorities have looked to understand grief and mourning as attempts to reconcile "separation" and "attachment." On the one hand, reality requires the bereaved person to accept the loss in order to achieve a healthy adaptation to continued life in the real world in which the deceased is absent. On the other hand, psychological needs of the bereaved requires a certain maintenance of the previous relationship in spite of the absence of the deceased, the process of attachment. This dilemma requires each survivor to work through a balancing of the needs of separation and the desire to maintain an appropriate attachment depending on the unique circumstances of previous and ongoing relationships. The former demand, accepting the loss, is likely to generate intense anxiety; the latter demand, maintaining features of the relationship, usually provides comfort, but can interfere with future relationships if too much attachment is maintained because of the comfort it provides.

15.02 Anticipatory Grief

We tend to think of bereavement and mourning as beginning after death, but this is inaccurate when dealing with a loved one who suffers through a prolonged terminal illness. In this situation, often in conjunction with helping the patient deal with his or her existential suffering, the family is likely to be thrust into the grieving process long prior to death. This "premature" introduction of issues related to separation and attachment when undertaken prior to death is referred to as "anticipatory grief," and may produce a profound influence on both the family and the patientís care during the final stages of life. It is because of the effect of this anticipatory grief on care of the terminally ill that we address the topic in this book. The following therefore addresses a series of issues related to anticipatory grief. Hopefully, this will give caregivers a better understanding of the interplay between their own grieving and how it influences their caregiving.

First, it should be known that anticipatory grief is the rule and not the exception. Of three hundred fifty subjects studied during the bereavement period, two hundred five (59%) stated they began grieving before the death, a percentage just slightly less than the percentage of patients dying from chronic illness as opposed to an acute event.

Second, in most cases therapists consider beginning the work of grieving prior to the loved oneís death to be beneficial and likely to shorten post-mortem mourning. This is especially true to the extent it allows and encourages the patient and family to work through "unfinished business," problem issues which become difficult to approach after death.

Third, it is important to recognize symptoms of anticipatory grieving in the care provider because, like the symptoms of post-mortem grief, simple understanding of the emotional bases of existing problems, as discussed below, are likely to be highly therapeutic.

Fourth, although working through anticipatory grief is often beneficial in reducing post-mortem grief, this is not always the case. At times, separation phenomena are worked through too early and a process of withdrawal develops which interferes with the mournerís ability to provide ongoing care. At other times, the development of attachment comes too early so as to create a bond with an aspect of the terminally ill patient which then dies along with the patientís death. [See, for instance, the discussion of double-grief in caring for sufferers of Alzheimerís Disease.]

15.03 Grieving as a Normal Process

In mourning the loss of a loved one, it is essential survivors understand that grieving is a normal, necessary process of dealing with unresolved issues, not one to avoid or of which to be ashamed. Each of us who live a normal life span will have losses and will be forced to grieve, in our own way and on our own schedule. And because each of us and each relationship in this world is unique, the process of mourning is also likely to be unique, with no need to conform to a pattern urged on us by others. Each of us will be best served to live through our losses in our own unique way so as to get fully in touch with the lived experience, to accept the sorrow of the loss, and to reestablish the presence of others to help fill the resultant voids. This helps us not only through our bereavement, but through other problems we encounter in the future taking the place of the loved ones we have lost.

15.04 Responsiveness to Understanding

Because grieving is a normal psychiatric function and not an illness, bereaved individuals can usually be helped a great deal by learning from friends, books, or organized peer groups without having to rely on either medical or psychiatric therapists. In fact, most grief therapists try to avoid becoming involved with survivors in mourning unless there is an associated depression or it becomes unduly prolonged, as they fear early intervention will only serve to incorrectly suggest the problems being experienced by the individual are abnormal. In avoiding the direct care of the grieving individual, therapists typically make it a point to pass on specific information such as the following as a means of assuring the sufferer what they are experiencing is normal.

First, they note it is common for the grieving person to "hear" or "see" the deceased person as part of normal grieving and that it is often helpful to discuss such occurrences with people who can be trusted to accept it as normal.

Second, they warn the individual that holidays, birthdays, weddings, funerals, and other anniversaries are likely to be difficult, with certain ones being particularly hard because of past shared experiences. That a worsening of grief at these times should not be considered abnormal but as a part of the normal grieving process.

Third, they warn that guilt related to past events needs to be worked through as part of the grieving process, but there is no room for guilt related to reestablishing relations with others. New relationships will only help cement the appropriate separation and attachments established earlier in the course of grieving. In other words, "it is okay to love again." Freedom from grief, or guilt, is not abandonment of what has been lost but rather affirmation of the ability and need to function in society and to share with others.

15.05 Timing

It has been said that most peoplesí problems with grief and mourning are not caused by abnormal responses to loss, but by other peopleís desire "to get mourning over with." Society pressures us to mourn quickly so we can return to the mainstream of life. But others suggest "to mourn what has passed is to affirm life. To grieve well is to value what has been lost. When you value even the feelings of loss, you value life itself, and you begin to live again." By taking the time to grieve fully, one can then value life more.

Grieving is a process often said to take at least 6-12 months, but this is probably an unfair statement when one is referring to loss of a close relative like a spouse, child, or parent. In these instances, it is probably fairer to say grieving will last a lifetime, but tends to lessen with time, the first time through a birthday or anniversary tending to be worse than the next and the next and so on.

In general, it is hard to tell how well a survivor is doing with the grieving process for the first month following a death because the required activity associated with funeral and estate arrangements and the tendency of friends and relatives to be present to help during this time tends to cover up the severity of grief. In contrast, the second month often gives a better indication of the true severity of the bereavedís grief, with some improvement usually being noted as one goes into the third month and more definite improvement by month six to seven.

In judging improvement, an outsider is likely to be misled by asking the bereaved directly. More accurate is an objective evaluation of how the individual is functioning, both as it relates to the demands of daily living, and as it relates to the ability to communicate with others, to hear what others have to say without the bereaved retreating into his or her own thoughts. Studies have shown individuals who have experienced anticipatory grief are more likely to consider themselves over the grief process earlier, sometimes as early as two months, but the number who feel this way is small, around eight percent. To the contrary, many who experience anticipatory grief are very close family members who are also likely to grieve for the longest periods of time.

15.06 Stages of Grief

Just as Dr. Kubler-Ross broke the acceptance of death into stages, so, too, is the grieving process delineated. Some commentators characterize these stages as being the same: denial, anger, bargaining, depression and acceptance, but others have taken varying approaches, with all recognizing the great variability from person to person. One such model employs a three step approach, consisting of (1) initial shock, disbelief, and denial; (2) an intermediate period of acute discomfort and social withdrawal; and (3) a culminating period of restitution and reorganization.

According to these theorists, the shock and denial phase is characterized predominantly by disbelief and numbness. The funeral, the gathering of friends, and other mourning rites help survivors accept the loss in a supportive environment. Viewing of the body is usually encouraged as a further means of overcoming denial. As numbness turns to intense pangs of separation, various searching behaviors, such as pining, yearning, and protest, generally take over.

The next phase, acute anguish, which typically lasts a few weeks or months, predominates once the searching for the deceased individual fails. Erich Lindemann has characterized six components of this acute anguish:

(1) Intense somatic distress, occurring in waves for periods of twenty minutes to an hour, and manifested by a tight throat, choking and sighing, an empty feeling in the abdomen, weakness, tenseness, and mental pain. He notes in particular that because visits may bring on those somatic disturbances, withdrawal from friends, relatives and others is common.

(2) Preoccupation with thoughts of the deceased.

(3) Guilt thoughts leading survivors to accuse themselves of having mistreated or neglected the dead.

(4) Irritation and anger being directed at themselves, the deceased, friends, relatives, doctors, the world, or God.

(5) Restlessness, agitation, aimlessness, and lack of motivation accompanied by the abandonment of the survivorís usual habit patterns.

(6) Identification phenomena leading to the adoption of traits, behaviors, or symptoms of the deceased (especially those of the final illness), which can occasionally reach pathological proportions.

Finally, during restitution and reorganization, the bereaved recognizes the extent of loss and realizes grieving has been accomplished. Attention shifts to life apart from the deceased. The hallmark of restitution is the survivorsí recognition they can return to work, resume old roles, acquire new ones, experience pleasure, and seek companionship and love.

15.07 Symptoms of Grief

It is not surprising symptoms associated with mourning are many and varied, as each individual takes a unique course through the stages of denial, anguish, and restitution. Although the following discussion of symptoms may suggest their occurrence is likely to be related to grieving, it must be emphasized many of these symptoms may also suggest physical or psychiatric illness for which proper medical evaluation and treatment is required and should be undertaken before assuming all is related to grief.

In the early stages of a normal grieving pattern, the mourner repeatedly reviews memories of the deceased only gradually realizing (or accepting) that these memories no longer corresponds to a real, living person. During this period, the griever is likely to suffer from irritability and restlessness, along with denial, a generalized feeling of anger and self-blame, often centering on some relatively minor act of omission or commission toward the deceased. Anxiety is likely to be heightened by the realization that the survivor no longer has the chance to be forgiven by the deceased.

Grieving persons are likely to present themselves as sedentary and withdrawn, having forsaken most activities and socialization. They often describe themselves as tired and not interested in physical exercise. Other common characteristics of the grief state include decreased appetite, a disturbed sleep pattern (frequent napping or dozing throughout the day), and lack of any interest in sexuality. Those who have lost a mate are often totally uninterested in a relationship with someone else and are offended at being asked about this.

A special kind of self-reproach referred to as "survivorís guilt" may occur especially after a prolonged illness when survivors recognize they experienced a sense of relief when the deceased died. Sometimes the survivors feel they should have been the persons to die. Later, as the survivor makes new emotional attachments, another form of guilt appears -- a sense of betraying a former spouse in particular. Many bereaved persons go through a period of time when anger becomes a significant part of their grief. The anger may be felt toward the deceased person for unhealthy ways of living or as a legacy or anger about the relationship. Usually, the anger is felt as a response to being abandoned and left in the lurch. As time goes on, the anger may be redirected away from the deceased toward others, the deceasedís physicians, God, fate, society, or at their family or friends. In addition, they may feel envious of those who still have the type of relationship they have lost.

Frequently there are intrusive voices or images which force their way into the mind of survivors, often occurring as distressing instant replays of the circumstances of the death. As these are likely to occur at a time when the survivor is also experiencing fluctuating states of turmoil associated with the unpredictable states of emotional and cognitive thoughts, they may feel overwhelmed, out of control, and as though they were going crazy. This may be particularly distressing for healthy, generally adaptive people who never before have experienced such an emotional roller coaster and may be particularly disconcerted be their inability to assert control over their own internal lives.

At times mourners appear to purposely take on new personalities in an attempt to ease the pain of the grieving process. These strategies may include avoidance of reality, rationalization, attempts at humor, involvement with new types of friends, passive distraction (such as immersion in television) and indulgence in food, alcohol, tobacco, or sex. Many persons cite belief in God as helping them cope and find meaning in death even when they have not appeared to be religious previously. On occasions the mourner may chose to embellish the previous relationship instead of separating from it by maintaining and building symbolic, internalized ties, which tends to increase the deceasedís participation in the bereaved personís life through imaginings, symbols, legacies and memories. Efforts to perpetuate the lost relationship may be evidenced by so-called "linkage," an investment in objects treasured by the deceased or that remind the grief-stricken persons of the deceased. Alternatively, the survivors may take on the qualities, mannerisms, or characteristics of the deceased person, apparently as a means of perpetuating the person in some concrete form, or may develop physical symptoms similar to those experienced by the deceased or symptoms which suggest the illness of which the deceased died. Unfortunately, these strategies to avoid pain only serve to maintain the previous relationship, thus indefinitely blocking restitution which requires the previous process of separation to occur.

Alternatively, the grieving process may produce such insight into the weaknesses of former relationships the mourner actually comes out of bereavement much stronger than they were initially. This is particularly likely to happen when wives who have previously relied heavily on their husbands are surprised by their own capacity to tolerate grief, to carry on, and even to find new approaches to life, leading to an evolving sense of strength, autonomy, and independence appears. Having mastered acute grief, the survivors may then experience existential growth and may become more compassionate, patient, and balanced than they were before the loved oneís death.

15.08 Grief Versus Depression

As we have discussed previously, the layman tends to think of depression as being the same as unhappiness, but the physician does not. The same can be said about grief. Many layman will refer to others undergoing the grief process as being depressed whereas therapists and physician are likely to view the unhappiness as a normal psychological state naturally related to the death of a loved one.

Nowhere is this distinction more important than in dealing with grief, for a number of reasons. First, because when grief leads to clinical depression, it is far more likely to lead to suicide, medical illness, and psychiatric disabilities. Second, because the treatment of the unhappiness we associate with grieving and the modern treatment of depression with medications are so diametrically opposed to each other. And, third, because failure to recognize that grief is not the same as depression can lead to inadvertent drug therapy which may interfere with the grieving process. It is therefore important to try to differentiate normal grieving from depression, recognizing it is not always easy and that the two may come to co-exist, especially in individuals who have a history of previous depressive episodes.

In trying to differentiate the two, the one overriding difference between grief and depression as stressed by most commentators relates to loss or retention of self-esteem. In differentiating the two conditions, they point out that the predominant emotions in grief are sadness and a yearning for the return of what has been lost, accompanied by a sense of emptiness and lack of existential meaning, but without a loss of self-esteem. In contrast, the predominant emotions in depression are self-deprecation and overwhelming guilt, which reflect loss of self-esteem.

Another common difference is that with grief after the loss of a loved one, dreams of the deceased person and visualizations of other similar illusions are common, while they are not typical of depression. To further differentiate the two conditions, some commentators suggest grief tends to interrupt the individualís usual state of functioning, whereas in depression the individual continues to function but does so in an inappropriate manner. [The author admits he finds it somewhat difficult to make this differential.]

Factors which have been found to be associated with the development of depression during the grieving process include youth, poverty, low initial self-esteem, difficult parental relationships, multiple prior losses, neuroticism, and poor physical or mental health. Complicated grief patterns are more likely to occur following sudden death, a homicide or suicide, when it involves a missing person, or a situation in which the bereaved was partially at fault for the death. The presence of certain symptoms that are not characteristic of a normal grief reaction may be helpful in differentiating bereavement from depression. These include the survivor (1) feeling guilty about actions unrelated to the deceasedís death; (2) thinking about death in ways other than feeling he or she would rather be dead or should have died with the deceased person; (3) exhibiting marked preoccupation with worthlessness; (4) showing marked slowing of thought processes; (5) exhibiting prolonged and marked inability to function appropriately; and (6) having true hallucinations beyond just thinking he or she heard the voice of, or transiently sees the image of, the deceased person.

15.09 Grief Therapy

As mentioned earlier, a major element in "grief therapy" is reassuring the individual his or her feelings are normal, transient, beneficial, and do not require specific psychiatric or drug therapy. Another important element is discussing the process with the grieving party early during the terminal illness to help the sufferer recognize their own anticipatory grief and its potential effects on their own caregiving.

Although little is written specifically related to the treatment of anticipatory grief, there is little reason why suggestions related to dealing with mourning after death would not apply even earlier. The following are typical suggestions given to those who are in a position to help the bereaved. Knowledge of what health care providers are advised to do should be helpful for the individual griever to gain the understanding necessary to work through the mourning process. The following suggestions come from various sources addressed to physicians, nurses, grief therapists, clergy, hospice workers, etc.

1. Advise the mourner to avoid making significant personal decisions or lifestyle changes during this difficult time.

2. Acknowledge the stress the individual is going through and reassure them it is normal. Remember most bereaved persons do fine on their own without specific treatment. When additional help seems needed, a mutual-support group is usually beneficial. Such a group is efficient and both cost and clinically effective.

3. Suggest the need for rest, solid nutrition, diversion, the need to identify new activities, and routine meetings with others who share their distress.

4. Suggest concentration on the positive aspects of the deceased, not the negative.

5. Stress the uniqueness of the grieving process and accepting that a unique response may be perfectly appropriate for the individual. For example, a child going for a long ride on a motorcycle right after the funeral.

6. Recognize the early mourning period is a time to show love and appreciation and not to deal with specific issues. For example, by saying "Iím sorry about your loss" or, if you know the departed well enough, "Iím sorry about your mother."

7. Reassure the bereaved that a feeling help is needed is not a sign of weakness.

8. Later on in the course, mentioning that eventually the bereaved is likely to feel a desire to explore possibilities for new intimate relationships and that this would be normal and desirable if and when it occurs.

9. Minimize anti-depressant medication therapy if possible, except in the presence of a true clinical depression.

10. Many people write letters to the deceased during the grieving process. Consider doing this while the patient is still alive, first writing the letter as if the patient had died, then rewrite it maintaining those issues which the survivor feels can be addressed with the patient and omitting those that seem too stressful.

11. Encourage the grieving party to discuss their "unfinished business" with a terminal patient as well as encouraging the patient to address their own unfinished business.

12. Suggest that any unusual physical symptoms be discussed with the grieverís physician before assuming it is related to the grieving process.

When professional therapy is required for grief therapy, setting time-limits is often wise, for brief therapy is usually sufficient. Characteristics of such therapy usually involves (1) an educational component, helping the bereaved know what to expect; (2) encouragement for expressing the full range of bereavement emotions and affects through evocative techniques; (3) attempts to help the bereaved come to peace with their new relationship with the deceased; (4) attempts at helping the bereaved establish a new identity; and (5) focusing on an integrated self-concept and a stable world view.

Early in the grief process, when the prevailing forces are likely to be hopelessness, helplessness, inadequacy, and loneliness, the therapist aims at maintaining and communicating a conviction about the bereaved personís adaptive capacities. Later, as the bereaved person emerges from the period of intense regression, the therapist may play a role in supporting the survivorís efforts to try out new behaviors, explore new relationships, expand attitudes, and grow through the experience.

In an advisory journal to nurses the following was suggested:

1. Obtain an in-depth personal history of an individual. Understand what unique losses the person sustained, the meaning of those losses to the individual, the strengths a person brings to the situation, what that person values in life, and how grief is unique to him or her.

2. Develop a relationship which encourages openness. Remember "to be open is to be vulnerable, an important characteristic of humanness." To be vulnerable is often to suffer. We tend to avoid suffering, and yet avoidance of suffering may deter movement to higher levels of consciousness. Suffering offers us the opportunity to transcend a particular situation.

3. Understand the inexpressibility of many emotions and experiences. This inability to express feelings, however, only denotes the importance of being there for the individual in "disciplined presence."

4. Acknowledge that missing is likely to be the theme or sentiment the bereaved will want to talk about. It is this unfolding recital of history that is likely to be meaningful to the bereaved individual.

5. Notice that seeking help may indicate that the bereaved needs to be comforted. "The need is to let go, embrace prior experiences and allow the expansion of consciousness to unfold."

6. Understand the premise that pain and hurting of the bereaved are being openly acknowledged. In witnessing and being present to anotherís pain and hurt, it is important that we identify our own personal patterns of pain and hurt. Self-awareness is essential. In forming a "shared consciousness" with the one who is grieving, it is possible that the nurse may "revisit" a personal loss.

7. Anticipate a client holding onto memories, moments, and an identity as part of grieving. Confusion and mixed emotions can be manifestations of "holding on." Insight into the fact that this confusion is a normal part of the grief work is gained through nurse-client interaction. What the individual wants to do about holding on will become apparent as the grieving pattern emerges.

8. Understand that all societies define expectations of how one should grieve. Inform people, however, that each personís lived experience of loss is unique -- each of us has our own natural life rhythm, and it is important to let this life rhythm guide our actions and grief work. All of us must give ourselves permission to grieve.

9. Accept what the client is valuing in their life. This valuing shapes present experience and is an indicator of the significance of loss.

10. Recognize that change occurring in bereavement is unique to each individual. The nurse cannot assume that similar losses will reproduce like changes. Each has a unique pattern of response.

Before attempting an in depth approach to helping a bereaved person, it is recommended the "therapist" attempt an in-depth evaluation of the mourner. Critical to this effort is determining who the loved one was, what the person meant to the survivor, how they lived together, what their shared dreams and hopes were, and the nature of the events surrounding the death. The following are a few questions which have been suggested as a means to that end:

"How was the death for you?

"Were you ready to let go?

"Was there a sense of relief when your family member died?"

"Did you feel an empty space?"

"What are the memories of your family member, both before or after the illness?"

In evaluating the depth of grief for later comparison, it is wise to organize the patientís responses or behaviors (markers of the intensity of grief) into five or six categories, commonly including socialization, physical exercise, occupational activities, appetite, sleep and sexual interest.

15.10 Shadow Grief/Grieving by Others [Burn-out]

When dealing with a prolonged terminal illness, it is not unusual for non-family members to become involved in the process of anticipatory grief. This can be especially devastating for a nurse or similar care giver who repeatedly deals with terminally ill patients. The following symptoms are said to be common in "shadow grief," as it is called, but the list may also be helpful in recognizing the symptoms of anticipatory grief in family caregivers.

* loss of energy, spark, joy, and meaning in life;

* more frequent times of fatigue;

* detachment from surroundings;

* feeling powerless to make a difference;

* not speaking up even when you feel strongly about an issue;

* increased smoking or drinking;

* drug abuse;

* physical illness, insomnia, weight change;

* unusual forgetfulness;

* constant criticism of others, especially managers;

* consistent inability to get work done;

* self-doubt;

* uncontrolled outbursts of anger;

* emotions out of proportion to the circumstances that caused them;

* talking about patients and their families as objects;

* giving up hobbies or interests.

In the same article listing these symptoms, the following list of suggestions is made to help the caregiver cope.

* When you recognize "shadow grief" let it come out, jot it down, let it enter your consciousness. Put it in a journal."

* Do "purge writing." Give yourself five minutes to write down whatever comes to your mind.

* Get physical. Exercise.

* Take time to cry -- with and for your patients.

* Ask colleagues to help you perform tasks. You might be feeling inadequate when in fact the job youíve taken on is difficult or impossible to handle alone.

* Connect with your place of worship.

* Look for joy in you work and with your colleagues.

* Create a caring circle of friends.

* Seek professional counseling as needed.

* Listen to music. Ask if you can play soothing music in the unit while you work.

* Express your artistic side.

* Find other ways to give yourself comfort. Sit quietly for a few moments in a lounge or empty conference room or carry a photo of a favorite vacation spot on your clipboard.



Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

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