Most people suffer and die emotionally alone — isolated from those they have been intimately involved with throughout their lives. Social, family, and intrapsychic processes all operate to promote the isolation of illness and dying. In our society we have “illness and death specialists” to deal with many aspects of suffering and dying. Examples include hospitals, hospice care, nursing homes, morticians, and funeral directors. All are helpful to individuals and families, but also allow the family to become distant from an ill or dying person and each other.
Families operate generally to keep emotional tension decreased and equilibrium stabilized, with the goal being to maintain the status quo within the family system. Since anticipated or unanticipated illness or death disrupts the family equilibrium, family members react automatically in a fashion that will be least disruptive and upsetting to themselves and each other. This is a way of handling stress that is an emotional reflex. Consequently, an ill or dying person often operates partly in denial of suffering and death and partly to prevent upset in others.
Family reaction to serious illness and death is affected by:
- timing of the illness or death
- nature of the illness or death
- openness of the family system
- family position of the ill, dying, or dead person
With regard to timing, generally the older the person, the less the degree of family stress. Illness and death in older age is viewed as a natural and expected process.
There is a great deal of stress related to serious illness regarding the effects of the disease itself, who will provide care, expenses, and strong reminders that each succeeding generation is closer to its own aging and ultimate death.
Illness or death when an individual is in the prime of life is most disruptive for a family. This is time of life where family responsibilities are greatest to self, younger, and older generations. If someone at midlife becomes ill or dies it profoundly affects their children and elderly parents. Financial resources are at risk for all three generations who depend on the midlife generation for financial, emotional, and physical support.
When illness or death strikes an older couple who now has young adult children they may have fewer responsibilities to other generations, however, the illness or death will affect their opportunity for time alone to enjoy self, each other, children and grandchildren. The remaining spouse may need to consider life alone or beginning with someone else.
If illness or death happens to a couple with an adolescent child, there are several factors to consider. This circumstance may interfere with the adolescent achieving independence. It may set the adolescent up as a parental surrogate for siblings and thus hold the adolescent tightly within a family at a time when, developmentally, they should be growing more independent, solidifying their identity, and establishing healthy adult relationships outside of their family of origin. For the remaining spouse, there are often tremendous financial, domestic, and emotional responsibilities, which are often more than doubled.
Illness or death in a family with young children is profound. There are many parental responsibilities at this stage of life. The effects on the children are influenced by the:
- age of the child
- level of emotional and cognitive development of the child
- child’s emotional closeness to the ill or dead parent
- ability of the remaining parent to not allow his/her own emotions to create distance from the child (this is most significant to overall adjustment of the child to the disruption and loss)
In “The Bereaved Parent” by Harriet Sarnoff Schiff (1977), the author talks about how the loss of a child affects the family. How much the child is viewed as an extension of parental hopes and dreams — the more the child is viewed as an emotional extension of the self — the more disruptive the child’s illness or death will be to the family. This is especially problematic when the child takes on an important emotional position in the family and functions as part of the parents’ emotional self(s). Literature on child death says that separation and/or divorce occurs in 70-90% of marriages that lose a child. Siblings often exhibit symptoms such as acting out behavior, school difficulties, physical illness, and suicide. This is especially true for the child who is next in birth order. Children conceived to take the place (replacement child) of a dead child struggle with a variety of issues. It is detrimental to surviving children when the dead child is idealized in the family.
When an adolescent dies the weaning process is both abruptly and never terminated, as with suicide. This leaves the family in a state of suspended animation where they are never truly able to complete the task of weaning from the adolescent child.
The nature of illness or death may be expected or unexpected. Often there is a lack of psychological preparation for the illness or death. There is generally a lack of preparation for the realities of death, such as wills, insurance, and other financial arrangements. After the initial shock of the experience or event, there is an intense reaction to the loss that is often covered over and becomes a “taboo” subject. Such families tend to begin a long course of family difficulties usually viewed as unrelated to the illness or death. Multiple and ongoing symptoms may develop.
Families with illness suffer from the stress of permanent uncertainty — a roller coaster experience. This wears out the family emotionally. There may well be a financial drain. There may be a wish for death, tremendous ambivalence, and guilt. It is difficult for patient and family to achieve a balance between living and dying. Often the family and the ill or dying individual, acting to protect each other from intense anxiety, close down communications and relationships resulting in isolation and loneliness. This inability to deal with tension and uncertainty creates distance and further tension manifested in a variety of symptoms.
Holidays are difficult times for such families. Such events contribute to enabling a family to put reality “on hold” — thus making illness/death “taboo” subjects. The end result is continued isolation, loneliness, depression, and other symptoms.
“Openness” of the family system is the ability of each family member to stay non-reactive to emotional intensity and to communicate his/her thoughts and feelings to others without expecting the others to act on them. A more differentiated individual can remain non-reactive to the emotionality of others. They can define their position on the basis of thought or principle and can hear others’ thoughts without overreacting. The lower the level of differentiation of the spouses the less able they are to directly express to each other divergent or anxiety-provoking thoughts and feelings without becoming angry or upset. In families dealing with illness there is a greater likelihood of emotional and physical symptoms developing when family members are unable to deal openly with one another about the illness. Illness and death also isolates families from external networks such as work and friends.
The more emotionally significant the ill or dead member is to the family, the more likely it is that the illness or death will be followed by an emotional shock wave (ripple effect). There are two reasons why this happens: disruption to family equilibrium and the family tendency to deny emotional dependence when that dependence is great. Any family member who functions as emotionally over-responsible is likely to have others who are emotionally dependent.
When considering family treatment options and how to relate to families who are experiencing serious illness and death keep in mind that we only have control over how we handle the openness of the family system. To best help such families:
- use open and factual terminology and information
- establish at least one open relationship in the family system
- respect their hope for life and living
- remain calm and unreactive
- check on the progress of relationships and issues
- utilize family rituals, customs, and styles