Family Issues and Problems
Problems | grief & loss | isolation | feelings of uselessness, helplessness, powerlessness | depression | anger & conflict | anxiety | sexual issues | caregiver fatigue | organizing the care (last update 12/2004)
Families face a number of relatively common problems and issues in terminal illness; and the wrenching up and down process of illness is similar to that which the patient experiences. One primary difference is that while the patient is going through his or her trials, family members must watch helplessly. As discussed in the chapter on individual issues and problems, the situation is often complicated by different family members going through the process at different speeds. Sometimes the variations in experience result in patient and family having difficulty supporting one another.
Terminal illness may also have a tremendous impact on the roles people play in their family. A person whose main role is resourcefulness or problem-solving may find him or herself unable to deal effectively with the situation. A person who has always been dependent may suddenly be called on to take charge of enormous responsibilities and momentous decisions. To some extent, the patient must become more dependent, an especially difficult role for those who are accustomed to independence.
For the purposes of this site, "family" is operationally defined as the person or persons who provide care to the person who is dying. Far too often family consists of an elderly person with complete responsibility for the total care of a spouse. A family may also be several elderly people living in neighboring apartments, a homosexual couple, and other less traditional groupings.
The problems facing the family are in some ways similar to those facing the patient. The most common problems are grief, isolation, feelings of uselessness and helplessness, depression, anger and conflict, anxiety, sexual problems, and physical and emotional fatigue. Spiritual distress is discussed in the chapter on individual issues. As with the problems and issues of the individual, those of the family are often interrelated and thus may be more complex in reality than presented here.
Because suffering in the patient contributes to family problems, physical and other patient symptom management is part of addressing family problems.
When a loved one is dying, grief begins before the death. Family members and loved ones grieve not only for the death to come (anticipatory grief), but for the losses that accumulate throughout the process. These cumulative losses may include:
Two of these losses - competence and usefulness and physical health are discussed in the last part of this section.
While varying according to individual differences, the emotional manifestations of grief in family members are similar to those in the patient. There is shock and denial, followed by sadness, anger, guilt, loss of emotional feeling, and feelings of loss of control. Physical responses are also similar and may include shortness of breath, changes in sleep and appetite, gastrointestinal problems, and fatigue. There may also be difficulty relating to others, including the patient.
Once thought to be an important coping mechanism, anticipatory grief may, in some cases, result in problems in the family. Although at least some anticipatory grief is inevitable, there are times when family members grieve so deeply in anticipation of the loss that they are unable to help the patient. There are also instances in which family members work through their grief while the patient is still alive. When this happens, there may then be emotional distancing and further cause for the patient to despair and the family to feel guilt.
Helping in the process of family grief includes, first, for the family to understand that at least some of the pain is attributable to grief and is normal. It is relatively common for the family member who helps the most or seems to be the busiest helping to not show any signs of sadness or grief. In part this is a functional way of dealing with a difficult situation and in part, a defense against experiencing feelings. There are problems inherent in such a defense, principally that the grief and feelings tend to eat away inside the person and come out in anger or in later, very severe grief.
Like the patient, the family benefits from talking about the losses and feelings. It is unnecessary for others, including the patient, to understand exactly what the family is experiencing; but it is essential that they not have to pretend and thus go through the process emotionally isolated. Although it may appear burdensome to the patient, it is helpful in most cases for the family and patient to talk and thus grieve together.
Family roles must inevitably go through at least some change. Support to the family as they redefine their roles includes assisting them in talking about the changes and losses that are part of even positive change, provinding practical assistance to family members who take on new roles (e.g., walking a person through interacting with a government or insurance agency), and assisting others to support family members who are taking on major new roles.
Should the person who is dying be "protected." No. To be protected from all pain is, for many people, to be protected from living as fully as possible. In receiving and giving comfort, the patient becomes a partner in care - not just a passive recipient of care. As a passive recipient, the patient tends to exist alone on one side of the situation and the family on the other - isolated. As partners, the patient and family are together, not alone.
The best way to deal with grief is to prevent the terrible guilt that comes when the family realizes they did not do as good a job as possible of caring for the patient. Grief still exists, and there often is some guilt, but it is relieved in large measure among those who work hard to to help the patient. Family members who work hard with as much competence as they can muster tend to do better than those who do less than they could have. There is also a separate chapter on grief.
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Helping in the Process of Family Grief
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In the family, isolation and loneliness occur when other family members and friends do not come, or when they come and do not help or do not seem to have an appreciation for what everyone is going through. Some visitors expect to be entertained as if nothing of import was happening; others want the patient and family to be cheerful or "positive." In either case, the visit is not particularly helpful. Families that were never very social or involved in church or community activities tend to become less social and may receive little social support.
Especially in the later stages of disease, the overwhelming physical and emotional demands of giving care mean that there is little opportunity or inclination for social contact. The amount of work and the stress of giving care in later stages are hard to exaggerate. No matter how many people are around, in the later stages, the primary caregiver is likely to feel isolated.
Helping decrease or minimize isolation includes involving the family's personal resources as well as community resources. Involving personal resources means that the family will probably need to make specific requests for specific help - and be prepared for some expected helpers to not be helpful. Some personal resources such as friends and members of the same church will not know what to do, but respond very well to being given a specific job to accomplish. The later section on organizing gives specific direction on involving personal resources. Community resources and how to receive the best possible care are discussed in the section on dealing with the health care system.
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Helping with Isolation
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Feelings of Uselessness, Helplessness, Powerlessness
Feelings of uselessness, helplessness, and powerlessness are part of terminal illness - especially the later stages - under almost any circumstances. The behaviors and work that helped in earlier stages are no longer effective. The patient continues to get sicker no matter how hard people work; no matter how much people care and pray; and no matter how much money is spent. Every human throughout all time is ultimately helpless to stop death. And sometimes it seems there is nothing we can do to stop suffering.
But not all feelings of uselessness come from the illness itself. Many people simply do not know what to do when a family member (or friend) is dying. The health care system is also mysterious to many: From the perspective of doctors and nurses, the health care system (hospital, treatments, etc.) is familiar and logical. From the patient and family perspective, the health care system is often a mysterious and frightening entity that seems to exist for doctors, nurses, procedures, and so on - with the patient and family sometimes seeming only incidental to the functioning of the system. Sometimes the patient/family perception is more real and accurate perception.
Helping when feelings of uselessness and helplessness are a problem includes learning how to provide what care is possible. It is important to understand that at some point the primary purpose of care changes from curing to caring. This does not mean giving up. It means that the focus shifts from disease to suffering; from healing the disease to healing the person. The challenges in this care remain great for clinicians, patient, and family.
Health care providers, most especially nurses, are responsible for teaching family members how to deal with existing problems and prevent problems that might emerge. It is often necessary to request or even demand explanations of procedures, treatments, schedules, and so on. This site exists for the same purpose. The greater and the more competent the family involvement, the better everyone will do. Family involvement is important even in families able to pay for around-the-clock total patient care. Children, no matter how young, can help in some way.
My mother died in the middle of the night. The previous afternoon, she was having some difficulty breathing because of fluid in her lungs; and the secretions were coming up in her mouth. My four-year old son stayed with her along with the rest of us. He would wipe his Grandmother's lips with a damp washcloth or Kleenex. He also brought her water. Before he went to bed, he drew and colored a picture for her and propped it on the table beside her bed.
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Helping When Feelings of Uselessness, Helplessness, and Powerlessness are a Problem
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Sadness is universal in terminal illness and depression may also occur (please see the discussion of depression in the chapter on individual problems). Families most prone to depression include those in which there is:
Many of the symptoms of depression are similar to characteristics of people who are caring for a person with terminal illness. These include deep sadness, fatigue, inability to experience pleasure, feelings of helplessness and worthlessness, and difficulty sleeping. These characteristics also are manifestations of grief.
The use of antidepressants for a family member is less common than for patients. Some clinicians maintain that using medications masks emotional pain that is better to express early in the process than late. Others see antidepressants as essential for the family member to continue to function in caring for the patient. Both positions have validity. Emotional pain is inevitable and to mask it is futile: If it does not emerge early, it will come out later, and if later, then often in a more severe manner. At the same time, it is cruel to withhold medications from a person incapacitated by depression. For those with a history of depression, medications are essential. It usually takes at least two weeks for antidepressants to have an effect on depression.
Persons with major depression often require hospitalization. If not hospitalized, it is important that a family member who is depressed do something to help care for the person who is terminally ill. Persons with major depression will be able to do very little, but still, need to do something. Indeed, one of the key interventions for any person who is depressed is to get them moving.
If the family or patient does not understand depression, it should be carefully explained; and the patient with terminal illness should also be monitored for signs of depression. The patient certainly needs the opportunity to talk about this difficult situation, including concerns for what will happen with the depressed person after the patient dies.
Other aspects of care are similar to that with a patient who is depressed. This includes assessing risk for suicide after the patient dies. A family member who is depressed and grieving is at significant risk for suicide. Suicide risk interventions are basically the same as for a patient who is suicidal, except that monitoring/interventions should intensify during bereavement. Please see previous discussion of depression and suicide and the chapter on grief.
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Helping When Depression is a Problem in a Family Member
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Terminal illness brings tremendous stress to families, and many families react with anger and conflict. Recall that anger is generally a response to fear or threat and that the target of the anger may or may not be the cause. When anger is a lifelong pattern of behavior, it is an ongoing process within the person who is angry, and will occur regardless of what others do. In other instances, anxiety, helplessness, physical exhaustion, and other factors cannot help but be shown in anger. The anger may be directed to health care staff, institutions, the patient, and/or other family members.
It would be nice to think that families in which someone is dying would forget their individual quarrels and problems, and support one another through this difficult time. Many do. Many do not. Those old conflicts, hurts, and differences come out as strong as they were years ago. This is normal, and in many cases problems may be resolved or at least set aside. In some families, however, the conflict is so chronic and intense that it is neither resolved nor set aside, but continues to have negative impact on the entire family.
Anger and conflict also occur between family caregivers and health care providers. There are, of course, instances in which family and patient should be angry toward doctors, nurses, or institutions. Injustice and cruelty occur; and are complicated by the enormously high stakes of the game and the powerlessness of many patients and families.
There are also times when staff or institutions are scapegoats for family or individual problems. A common family example of displaced anger and conflict that can include both health care staff and family members is when a family member becomes suddenly, and sometimes temporarily, involved in the care or decisions. In terminal situations it is not uncommon for some of the adult children of a family to return home two to three times from out of town. While often helpful, those visits can present significant problems for all concerned. Conflict in out-of-town visits arises in two main arenas.
In both cases, after a several days of intense turmoil, the person from out of town leaves. The caregiver and patient may be emotionally and physically wrecked, but must pick up the pieces and go forward.
To help when anger and conflict are a problem, it is first necessary to recognize the effects that they have on oneself and others. Many people react to anger and conflict with great anxiety or internal tension so that a logical or thoughtful response is very difficult. The most common responses to anger are anger or withdrawal. Neither is very helpful, but one or the other may be difficult to avoid. Remember too, some anger and conflict are normal when a family member is terminally ill.
It is important that anger is expressed verbally rather than with physical violence. Great progress is made in understanding and dealing constructively with anger when the person who is angry is able to identify the circumstances and feelings that preceded the anger. Most often those feelings will be related to powerlessness, frustration, anxiety, etc. Look for a pattern in these. If the underlying feelings can be expressed, then those important feelings, rather than the anger, become the focus. This is, you will recall, the last chance to deal with family and individual issues. Some feelings of powerlessness or similar feelings or situations (often underlying anger) can be addressed through the patient and family working toward greater control or increased involvement in care.
Family conflict sometimes becomes intense and chronic. In some cases family members are unable to resolve conflict individually or within the family. It is then often helpful to use the hospice nurse or social worker to work with the family, perhaps in a family meeting. The most productive family meetings to resolve conflict often involve an outside (neutral) person who may, at times, call time out and take conflicted parties to separate rooms to calm the atmosphere. In these meetings goals are clarified; often those in greatest conflict may realize that their real goal was to fight with or "get" the person with whom they were angry. Once in the open, such a goal is changeable. Some family meetings result only in temporary truce and a plan for those in conflict to avoid one another.
When conflict is due to an unnecessary problem or injustice in the health care system, then the problem should usually (but not always) be addressed. Sometimes, because of perceptions of institutional power and the possibility of retribution, family and patient find it better to simply accept the problem.
Anger and conflict related to opinions and judgments from someone not close to the situation or who lives far away should be addressed by identifying and addressing what are usually underlying feelings of guilt and ill-expressed concern. This can be enormously helpful to the entire situation in that the positives of concern and love take the place of conflict. What was a problem becomes an opportunity for reconciliation. It may also be helpful to remember that the problem is limited by the person's stay.
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Helping with Anger and Conflict in the Family
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In many ways, anxiety in the family is similar to anxiety in the patient. The primary difference, other than whatever individual differences exist, is that anxiety in the patient is often related to dying or being dead. In the family, on the other hand, differences in anxiety include fear and anxiety related to the patient dying or being dead. In both cases, grief and role changes are part of the process. Included in this anxiety or fear is the realization of the utter finality of the death. In the case of the elderly, the death of a spouse may be perceived as not only that death, but a remaining lifetime of loneliness culminating, perhaps, in nursing home placement.
Anxiety in family members is experienced much the same as in the patient. It is the same dread, fear, nervousness, irritability, sleeplessness, changes in appetite, shortness of breath, craving for alcohol or drugs, and so on. Increased anxiety is associated with changes (especially deterioration, but sometimes also improvement) in the patient's disease status, poorly managed symptoms, and emotional changes in the patient. Either not understanding what is happening or knowing what is happening and trying to hide the truth from the patient contributes to anxiety. Loss of control plays a major role in anxiety. Anxiety may also be related to a preexisting anxiety disorder, but, as with the individual, usually is attributed only to the terminal situation.
Helping when anxiety is a problem in the family begins, with first, as much as possible, preventing problems such as unexpressed grief and unmanaged symptoms that so often lead to anxiety. Overwork in providing physical care is a given in many situations, and often results in exhaustion which, of course, contributes to anxiety. Thus respite care or other relief for the caregiver may decrease anxiety as well as other problems.
It is of vital importance that everyone involved know, to the extent each is able to understand, what is happening. It seems like health care staff assume, because they know, that patient and family also understand what is happening and what will happen. Of course the patient and family do not know, and this lack of knowledge and control are major contributors to anxiety and anger. As with the person who has the terminal illness, when anxiety occurs as a situational problem, it usually responds well to short-term or supportive intervention.
Talking about the feelings of anxiety and what seems to cause and/or intensify them is helpful. In many cases, the family member most or solely responsible for care seems to operate alone with her or his feelings of dread and fear. In some cases, talking about these feelings with the patient is helpful; and in others it is best to seek help elsewhere. Identifying and increasing understanding of underlying issues, e.g., fear of making a mistake or being alone, helps the anxiety become more manageable.
Medications are indicated when anxiety is severe or impacts the ability to provide care. An antidepressant may be indicated when anxiety and depression are mixed. Long-acting benzodiazepines such as diazepam (Valium) are probably used more often in persons without medical complications than are short-acting ones such as alprazolam (Xanax). Short-acting anti-anxiety medications are usually the better choice for both patients and family members. Antidepressants, especially SSRIs are indicated when anxiety and depression are mixed.
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Helping when Anxiety is a Problem in a Family Member
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Loss of sexual intimacy is most problematic in the early stages of illness and in long-term illness. As in so many other issues of terminal illness, differences in sexual needs is frequently the primary issue. In later stages of illness, the patient may have no interest in sex per se, but is likely to have a significant need for intimacy. In long-term illness, e.g., multiple sclerosis, lack of sex can become a serious problem for the spouse, while the patient has little or no interest in sex. The physical and emotional exhaustion inherent in giving care, regardless of caregiver circumstances often means that sex is not a significant issue.
The most common sex-related problem is the need for physical and/or emotional intimacy rather than sex per se. However, the desire for sex itself can become a problem in some cases. The problem is complicated by the private nature of sex and feelings of shame that may accompany sexual desire as a loved one is dying.
Helping when sex is a problem begins with clarifying whether sex per se or the need for physical and emotional intimacy is the problem. Although sex is not possible in many instances, intimacy is not only possible, but essential. Too often both the patient and family are so caught up in sickness that loving and caressing are forgotten. Thus intimacy can certainly occur through holding hands, touching, caressing, kissing, and so on. I am not talking here about great physical passion - but about the loving that can happen between people who love one another.
Sexual desire is normal. It may not feel right when a loved one is dying; but it is normal. The primary issue is what one does with the desire. My basic premise is that sex outside the relationship with the loved one should be avoided. It is helpful to share the existence of problems with sexual desire with a person who is (1) nonjudgmental and (2) not in any way a potential sex partner. Sex and logic often do accompany one another. Hence the opportunity to talk through some of the problems can result in increased orientation to reality and the potential consequences of acting out desires.
Diversionary techniques may help. Thinking about and struggling with sexual desire and/or guilt about it usually only increases desire. Avoiding, interrupting, or diverting desire (e.g., masturbation) are more effective than confronting it.
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Helping when Loss of Sexual Intimacy is a Problem
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Caring for a loved one with terminal illness is physically, emotionally, and spiritually tiring well beyond what many people expect, especially when one family member has total responsibility for the care. There is often a cyclical nature to the fatigue, beginning with physical labor and sleep loss. The labor is harder and sleep more difficult because of associated grief and anxiety. Isolation is a common complicating factor. The caregiver's schedule of leisure activities and other work and is also altered, thus further compromising her or his energy and abilities.
The work and demands of caring for a seriously ill family member impacts the physical health of caregiver(s). First, chronic tiredness results in general debilitation and increased risk for stress-related illness. Chronic tiredness also results in caregivers frequently neglecting their own health by ignoring dietary restrictions or not taking their own medications regularly. In some cases, increased use of alcohol, tobacco, and/or other mood-altering prescription or nonprescription drugs occurs.
Irritability and/or depression tend to increase. Some caregivers become more demanding and critical of others, thus, in some cases, driving actual or potential helpers away. Indeed, it is often true that nobody else can do as good a job of giving care; but it is also in the patient's best interest that someone else help.
Caring for loved ones in sickness and health is an ancient and vital duty of life. Like the soldier who goes trembling into battle, we would rather this not be happening; but we choose to do our duty. Sacrifices are made; some willingly, some unwillingly. In a sense, we really may be "happy to do this." But it seems to me that it is more and deeper than happiness. I wonder why we have so much trouble believing we have duties or saying (and accepting when another says), "I'm choosing to do this because I care for you."
Helping when caregiver fatigue is a problem begins with understanding that in most cases, great tiredness is inescapable. It is possible, to some extent, to prevent or decrease complete exhaustion, especially and most importantly, early in the illness. It is important to recognize the signs of exhaustion, such as irritability, forgetfulness, and personal neglect. Is there really this much conflict in the family, or is it a sign of exhaustion?
It helps when the caregiver's work and sacrifice is acknowledged by other people, including the patient. Of course many caregivers deny that they are tired or sacrificing to provide care. They still benefit from acknowledgment.
Staying healthy is important to giving good care and the caregiver's health status should be regularly assessed. Hospice staff, outpatient clinic staff, doctors and doctor's office staff should be pleased to answer questions, check blood pressure, etc. Influenza immunization is important before flu season.
Community resources such as hospice should be utilized early in the illness. One of the great problems of terminal illness is that people wait too long to bring in hospice. Patients and families assume that every doctor knows best when to bring in hospice. That is an incorrect assumption. Waiting until symptoms are out of control or the patient is gravely ill is a mistake that results in unnecessary suffering for patient and family. Please see the introductory chapter, section on dealing with the health care system. Personal resources such as family, friends, and church should also be mobilized early in the illness.
Wisely used community and personal resources allow the caregiver to avoid the exhaustion that may otherwise overwhelm the family. How to organize these resources is discussed in the section on Organizing the Care, below.
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Helping when Caregiver Fatigue is a Problem (and Prevention of problems)
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For a number of reasons, many people in western cultures no longer know what to do when a family member is terminally ill. The nature of modern medicine means that the patient and family are often passive recipients of technological treatments. Both at home and in the hospital, family, friends, and neighbors are far less involved than in years past. This is changing to some extent because of the hospice movement, demands for individual autonomy, and changes in the health care system.
Organizing care is not something that just happens naturally. Organization requires thought, work, and sometimes reorganization. The brief time spent on organization is sometimes begrudged; but time spent here helps avoid conflict and gaps in or duplication of care. Clear division of responsibilities is essential. Everyone involved should know who will do what and when it will be done. Setting clear expectations for helpers is absolutely essential in them doing a good job and feeling good about what they are doing. There is no time nor place where job satisfaction is more important than this time and place.
Those who offer to help on the basis of, "Let me know if you need anything" are seldom very helpful. There are a few people who can be depended on to pitch in irregularly as needed, but they are the exception.
Not everyone will help and thus some disappointment is to be expected. Some people will offer to help, but are always busy when help is requested. Some may help once or twice, then fade from the picture. On the other hand, one or two people may emerge as more helpful than expected.
Organization should be based on patient and family needs and on the individual abilities of those who will help. The following list of common needs/tasks will help in planning. Please bear in mind, though, that each situation is different and not all of these needs fit every situation and there are situations in which other needs exist.
Every family has its own unique constellation of actual or potential social support. A good way to mobilize a support system is for each family member to go through, name by name, their address book, church directory, civic club members, colleagues at work, and any other such listings. The list of names from such a search may be smaller than expected; and the list is likely to grow smaller as contact is made and help requested.
Typical Needs/Tasks in Terminal Illness
Some of these must happen several times/day, some daily, and some less often. The critical issue is that the help is dependable.
References
Byock, I. (1998). Dying Well : Peace and Possibilities at the End of Life. New York: Riverhead Books.
Davies, B. (2001). Supporting families in palliative care. In B.R. Ferrell & N. Coyle (Eds.). Textbook of Palliative Nursing (pp. 363-373). Oxford: Oxford University Press.
Fallowfield, L.J., Jenkins, V.A., & Beveridge, H.A. (2002). Truth may hurt but deceit hurts more: Communication in palliative care. Palliative Medicine, 16, 297-303.
Kemp, C.E. (in press). Spiritual care interventions. In B.R. Ferrell & N. Coyle (Eds.). Textbook of Palliative Nursing (2nd ed.). Oxford: Oxford University Press.
Kemp, C.E. (1999). Terminal Illness: A Guide to Nursing Care (2nd Edition). Philadelphia: Lippincott, Williams & Wilkins.
Milberg A, Strang P, Jakobsson M. (2004). Next of kin's experience of powerlessness and helplessness in palliative home care. Supportive Care in Cancer, 12, 120-128.