When AIDS takes a life.

After three years of marriage, Linda and n gave birth to a healthy baby boy. When their son was 6 months old, the parents became alarmed because he began to lose weight. More alarming was the fact that the infant began to need smaller diapers rather than larger ones.

Initially their pediatrician was baffled. After extensive testing doctors determined the little boy had AIDS. When the parents were tested, they learned that Linda, the mother, also had AIDS. Their son died at 14 months. Linda's health continued to deteriorate for nearly three years before her life ended at age 32.

Despite the fact that shortly before her death Linda was an emaciated 60 pounds and had become completely blind, her diagnosis was kept a secret from family, friends, and colleagues. Even at the burial all but one brother and sister believed that Linda had died of cancer.

Unfortunately, there is still a major social stigma attached to AIDS patients. As a result, those who grieve an AIDS loss are afraid to acknowledge their grief publicly. When there is an AIDS-related death, survivors will need all the help, support, and ways to help AIDS survivors heal.

Respond with compassion. The AIDS crisis has presented not only a medical challenge but also a theological one. Religious groups are confronted by the fact that in many cases AIDS was contracted through drug use or numerous casual sexual relations, both of which violate traditional Christian teaching.

In spite of that reality, all AIDS patients and their survivors must be treated with unconditional love and acceptance.

Be sensitive to hidden grief. Dr. Alan D. Wolfelt, a grief specialist and director of the Center for Loss and Life Transition in Fort Collins, Colorado, reminds caregivers that AIDS survivors are "disenfranchised" because they feel the need to hide their grief. He states: "Disenfranchised grief is experienced when the death of someone loved is not acknowledged or socially supported. Unfortunately, many survivors of AIDS deaths are disenfranchised. Because of the social stigma surrounding the disease, survivors of AIDS deaths feel the pain of loss yet may not know how or where or if they should express it."

This pattern of sheltering feelings and hiding the true nature of the illness often begins when AIDS is first diagnosed. One example is that of Elizabeth Glaser and her husband, Paul, Hollywood director and former star of the TV series Starsky and Hutch. In 1981 Elizabeth was infected with the AIDS virus through a tainted blood transfusion. Unknowingly, she passed the virus on to her two children.

Ariel, their eldest daughter, was diagnosed as HIV positive at age 4. Although the couple decided to confide in only a few of their closest friends, the impact was extremely negative. "At first no one would allow their children to come and play at our house," Elizabeth Glaser writes in her book In the Absence of Angels.

"Some friends refused to let my kids come to their homes at all. Some said their children could continue to play with mine, but only at the park. Some dropped out of our lives. We asked a therapist to see if a child psychiatrist would work with Ari when and if we felt it was appropriate. I was later told that psychiatrists would not see my child because they were afraid if word leaked they would lose too many other patients."

Unfortunate experiences such as those of the Glasers force AIDS patients, their families, and close friends to engage in a conspiracy of silence. A healthy grief recovery hinges on the freedom to express feelings openly and honestly. "Just like other bereaved persons grieving the loss of someone loved, AIDS survivors need to talk, to cry, sometimes to scream, in order to heal," says Dr. Wolfelt.

Work to be well informed Because of inaccurate information and fear associated with AIDS, there is a continuing need for education and information. Be informed so you can inform, educate, and reassure others about AIDS issues. Some people hesitate to visit surviving family at a funeral home, fearing they will contract the virus themselves simply by shaking hands or embracing family members. The national Funeral Directors Association recently published a helpful booklet titled A Caring Response to an AIDS-related Death. That brochure is effective in dispelling myths about contracting AIDS during a funeral visitation.

Accept the intensity of AIDS grief. The harsh negative response from society toward AIDS patients and families creates a more intense grieving process. "Sometimes when I am alone in my car," Glaser says, "I scream, |If You are there, God, I hate You!'"

While such intense and angry expressions can be unsettling to a listener, the bereaved need to get those feelings out. Dr. Wolfelt advises, "Accept that survivors may be struggling with explosive emotions, guilt, fear, and shame well beyond the limits experienced in other types of deaths. Be patient, compassionate, and understanding."

Be aware of support groups. One of the most effective sources of help to AIDS survivors is a support group. There they can meet with people who have had a similar loss, see others coping successfully, and share their feelings without fear of rejection or ridicule. A practical act of mercy on the part of a caregiver would be to take the time to locate a group--noting location, dates, and meeting times, and giving that information to the bereaved.

Two organizations that can provide information about AIDS and support groups are: National Association of People With AIDS, Box 34056, Washington, D.C. 20043 (phone: [phone]); AIDS National Interfaith Network, 300 I Street NE., Suite 400, Washington, D.C. 20002 (phone: [phone]).