Between the diagnosis of a terminal illness and the actual death, many losses occur which affect both the ill person and family members. They may be physical, psychological, social, spiritual or a combination. Reaction to these losses is called anticipatory grief, a term commonly associated with the slow and expected deaths that have become more typical in our society.
A man dying of cancer or AIDS, for example may no longer have the ability to work and may grieve the loss of his identity as a productive person. A woman whose husband suffers from Alzheimer’s disease may grieve the loss in process of his ability to provide support and companionship. She may also grieve losses yet to come, such as the further deterioration of his health and the unfulfilled plans and dreams they have shared.
In spite of these painful aspects, however, ongoing love and attachment during the dying process can still exist. One can grieve and love at the same time.
While loss generates grief, love reaffirms the value of attachments that still survive. Even though he grieves his lost vocational role, the many dying of cancer or AIDS may still cherish the time he has left to share with his family. And the woman who grieves the impact of her husband’s Alzheimer’s disease may still find comfort in his physical presence and determine to do everything she can to love and care for him until he dies.
"It's what you learn after you know it all that counts."
John Wooden
Successful caring for someone with a life-threatening or terminal illness requires the development of good coping skills. Many of our everyday activities involve routine and habitual behavior. We bathe, set the table, start the car or get ready for bed without much attention or effort. But when we are dealing with a stressful situation, such as terminal illness, these customary patterns are interrupted or disturbed, often requiring us to change our behavior to manage the external and internal demands that tax or exceed our resources.
We all have the ability to adapt to change, but we must learn how to cope with loss. Most of that learning can be done by observing the behavior of others and by remembering our own experiences. From these observations, we may decide which coping techniques are the most comfortable or efficient for us; then act accordingly.
Professional grief counselors have identified four steps which may help in the coping process. They involve the most basic dimensions of living: Physical—satisfying bodily needs and minimizing physical distress. Psychological—maximizing the feelings of security, autonomy and richness. Social—sustaining and enhancing significant interpersonal attachments and addressing the social implications of dying.
Spiritual—identifying and developing or reaffirming sources of spiritual energy to foster hope.
Physical steps—good physical care is often fundamental to coping with a life-threatening or terminal illness. Caregivers who help an ailing loved one get comfortable in bed, help them get to the bathroom, drink some liquid, or enjoy a tasty snack are providing care in its best sense.
Psychological steps—security is often a high priority for people who are aware of a decline in their mental faculties or who recognize that they have problems with confusion. Individuals who are alert may need reinforcement of their autonomy by being involved in decisions about their own care, where they will live, or even smaller, more symbolic decisions such as choosing what they will wear or which dessert they will eat on a given day. Confronted by the unknown and frightening realities of death, they may never feel completely secure. But support from caring persons can be a course of great comfort and help.
Social steps. As their energy diminishes, individuals facing death may have to decide which relationships they wish to sustain and enhance, and which to loosen gently. A dying person might also wish to deal with legalities for the protection of his or her estate, or to simplify the tasks which will be faced by survivors through a living trust, will or durable power of attorney. It is also quite common for people in these circumstances to participate in their own funeral arrangements and the settlement of legal and other affairs. Doing so can help them maintain a sense of control and autonomy. Spiritual steps. The terminally ill often wish to identify a sense of meaning to their lives. At this time, developing or reaffirming shared religious values or philosophical convictions can be very important. Such convictions frequently involve a personal god, broad human beliefs about life and nature, or a personal set of values.
All of these steps, especially spiritual, can help affirm a sense of hope.
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