By Charles A. Corr, Ph.D.
Most of us think of “grief” as something we experience only after the death of someone close to us. But grieving can begin long before the final loss occurs, for you as well as your loved one. In its purest definition, grief is the reaction to loss.
Although they may be almost imperceptible, a number of losses often occur in the course of a terminal illness, such as loss of one’s identity as a productive person, loss of physical strength, loss of independence or loss of the ability to communicate. As the person who is ill grieves these losses, those close to him or her may feel a parallel series of losses. Reaction to these losses is called anticipatory grief, a term commonly associated with slow and expected deaths.
Because the best understood form of grief occurs after death, many people will not understand what you are experiencing during the worst moments of anticipatory grief. Few people in our society are geared to offer support to family members before a death occurs. Anticipatory grief, though, is a normal and healthy response to loss.
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 dreams they shared.
In spite of these painful aspects, however, love and attachment during this time 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, a man dying of cancer may still cherish the time he has left to share with his family.
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.
What you can do
When it is clear that physicians cannot save the life of a terminally ill person, we often hear: “There is nothing more that we can do.” While that may be true in the healing sense, caregivers can still work to minimize the sources of distress. You can seek medical assistance to manage pain and provide tender, loving care—tucking your loved one in bed, fluffing a pillow or feeding him a cup of soup. Anyone who is willing to be helpful can simply offer his or her presence, reducing the sense of isolation and abandonment that affects so many ill and dying people.
Helping them cope
Professional grief counselors have identified four ways we can help the terminally ill cope.
They involve the most basic dimensions of life:
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 or drink and eat are providing care in its best and most basic sense.
Personal security is often a high priority for people who are aware of their declining mental faculties. Alert individuals may need reinforcement of their autonomy by being involved in decisions about their own care, such as where they will live. Even smaller, more symbolic decisions such as choosing what to wear or eat can be important.
As their energy diminishes, individuals facing death may have to decide which relationships they wish to sustain and which to loosen gently. A dying person might wish to deal with legalities for the protection of her estate or to simplify survivors’ tasks. One may also participate in his/her own funeral arrangements or the settlement of other affairs. Doing so can help maintain a sense of control.
People nearing the end of life often wish to identify a sense of meaning in their lives. At this time, developing or reaffirming religious values or philosophical convictions can be very important.
Caring for the caregivers
Good end-of-life care must include both the ill person and family members. Each of you is a feeling person who deserves support and assistance in meeting your own needs at this difficult time. Immediate family members and close friends must be given the opportunity to take part in the caregiving, since the desire to be helpful is almost always among their needs. While specific roles may vary for each person, the fact that they are doing something lets them feel they are contributing and can help them avoid feelings of guilt after the death occurs.
Most importantly, at-home caregivers must avoid becoming overburdened. If you do, you will be unable to take care of your loved one or yourself. The role at-home caregivers assume in the caring process should be appropriate for them and within the limits of their resources. Professionals and other external care providers can help family members identify and fulfill more difficult roles. The aim should be to do all that we can—not more than we can—to take care of those we love.
The knowledge of approaching death provides a rare opportunity to express your true feelings for one who has been important in your life. It’s a time when you can say thank you; I love you; forgive me as I forgive you; and goodbye. Grief and sadness are not eliminated, but they can be faced without complications in the knowledge that you did whatever you could for someone you loved.
About the author
Charles A. Corr, Ph.D., is professor emeritus, Southern Illinois University Edwardsville, and former chairperson (1989-1993) of the International Work Group on Death, Dying, and Bereavement. Dr. Corr’s professional publications include 22 books and more than 80 articles and chapters on a wide variety of death-related topics.