Is AIDS Bereavement Unique?

by Peter Goldblum

I remember the first time I was asked to do a hospital consultation with a dying patient with "Gay Cancer." It was in the early 1980Õs. When Patrick McGraw, Ron's physician, called with the referral he said, "IÕve done all I can do for him. This is the time I usually ask the chaplain to go in, but neither Ron nor his lover feel comfortable with a priest or rabbi, so I thought a psychotherapist would do." At first I was flattered, then bewildered; nothing in my training prepared me to make such a visit. As I was walking up the steps to the hospital, the words "compassionate care" kept coming to mind.

When I entered the room, I found a gravely ill man in the hospital bed; his partner, Sid, was standing next to him holding his hand. They were expecting my visit and welcomed me cautiously. Trained by frequent visits by other consultants, they fell into telling me Ron's medical history. I was glad for the time it gave me to think about what I had to offer these men.

Shortly, a nurse came in to do a short medical procedure for Ron. Sid and I excused ourselves and went out to the hallway. Again, I was somewhat relieved to have some time to think. In the hallway I asked Sid how he was doing. Obviously exhausted, he bravely reassured me that he was holding up. I then asked him if there was anything that he wanted to say--or wanted to hear--from Ron that wasn't being said.

At first he seemed surprised by the question and then relieved. "Well, yes there is," he said. "Ron and I have been together for fourteen years. We have a beautiful home together and raise prize show dogs. We get along wonderfully. Neither of us is what you would call 'mushy', we haven't had sex in years and that's fine with both of us. I know that he loves me and would do anything for me, but neither of us has said that to the other for years. I would like to hear him say he loves me and I want to tell him how much I love him, but I feel embarrassed." I asked if he would like me to facilitate that discussion, and he said he would.

Relieved now that I had a purpose, we returned to the room and Ron. I told Ron that the purpose of my visit was to help him and Sid say those things they wanted to say to each other before they had to say good-bye. Since no one really understood the disease that he had, no one could really predict the future. He broke in at that point and said, "I know that I'm dying. I need to start saying my good-byes." Ron started out in a weak and frail voice. "Sid, I know that I don't say this as often as I should, but I really want you to know how much I love you and that my only regret about dying is leaving you." All three of us began to sob, as Sid proclaimed his unending love.

Shortly, I excused myself, gave them my card and said I would check in the next few days.

Two days later Sid called to tell me that Ron died peacefully. He thanked me and told me the last few days were the closest of their lives. Again, with a quiver in my voice, I asked him to check in with me whenever he needed. I didn't hear from him for several months, when he came by my office for one session. He told me about the last days of Ron's life. When I inquired about him, he felt that he was progressing well, was busy with the house, garden, and dogs. As he was leaving he said, "I just want you to know what a comfort it is for me knowing and having heard from Ron that he loved me. Thank you, I carry with me several lessons learned that day with Ron and Sid.

First, bereavement work begins long before one has experienced a death. Having respectful compassionate care by medical providers, having one's relationship honored by others, and the knowledge that one has done a good job caring for a loved one, go a long way in assisting the mourning process.

Second, at the core of what we do as mental health professionals is compassion. Our ability to be present with our clients and to listen with an open heart will usually bring us to do the right thing.

Finally, compassion and knowledge augment and potentiate each other. In other words, knowing what we are doing, allows us to more compassionately focus on our clients needs rather than our own insecurities.

The AIDS epidemic has left thousands of mourners in its wake. In what has been described as "a culture of mourning," people associated with those groups most affected by HIV disease routinely experience multiple and chronic loss. As of 1994, up to 60 percent of gay men reported annual losses, and one-third of these bereaved individuals described multiple loss of family, friends, and neighbors. Some AIDS mourners have witnessed the extinction of their entire social support network, thereby reaching a level of isolation uncommon to most other bereaved groups. Despite new medical treatments that prolong the lives of many people with HIV disease, deaths continue to occur and caregiver burden remains significant. As is true of the HIV epidemic, the epidemic of HIV-related grief is far from over. Even with a 12 percent decline in HIV mortality in 1996, 22,000 Americans died of AIDS in the first six months of that year.

The experience of HIV-related bereavement is not a randomly distributed event. Within the gay and bisexual communities, those men who have a history of high-risk sexual behavior are not only more likely to be infected, but are also more likely to lose one or more friends to the disease. In fact, men who are HIV-infected are almost twice as likely as are uninfected men to have lost a loved one. This places HIV-infected gay and bisexual men in a dilemma: on one hand, the gay community can provide support and assistance in facing the epidemic; on the other, integration into the gay community increases the risk of experiencing multiple loss. Likewise, uninfected people who are closely connected to the gay and bisexual community may risk further grief by maintaining or deepening these connections. While there is little research on this dynamic of community integration in other populations, it is probably similar for other groups with high infection rates, for example, injection drug users.

The research literature supports the conclusion that people facing AIDS bereavement share characteristics with people facing other types of grief. For example, a New York study conducted early in the epidemic found that people grieving both HIV-related losses and other types of losses experienced grief symptoms including numbness, denial, and preoccupation with the deceased. As is true for studies of grief and caregiving in general, this study found that the intensity of grief symptoms was greatest for those who had taken care of a partner or close friend during his or her illness. A more recent study comparing AIDS bereavement versus cancer bereavement found both similarities and differences in psychological responses between the two groups within the first three months after a loss. Specifically, the two groups were similar in terms of levels of grief, traumatic stress, grief-related depression symptoms, and general psychiatric symptoms, including anxiety, depression, somatic symptoms, and social dysfunction. However, AIDS-bereaved subjects reported lower levels of social support in response to bereavement and a greater number of losses. They were more likely to hide the cause of death from others and reported more support from friends than from family. In addition, some AIDS-bereaved individuals reported greater levels of rejection.

In contrast to most life-threatening diseases, HIV disease has had an impact on disproportionate numbers of young and middle-aged people. Such premature death may be expected to increase the risk of prolonged or pathological grief reactions in loved ones. In addition, the stigma associated with AIDS, homosexuality, and substance abuse may prevent some people from seeking support from community resources. The likelihood of multiple and chronic losses due to the epidemic further increases the burden for people with the disease and those who care for and mourn them. Finally, given that these losses exist within the context of an epidemic, a sizable group of care givers and mourners are HIV-infected and struggle to cope with their own health concerns at the same time as they minister to others.

I've learned a lot about AIDS since meeting Ron and Sid--professionally and personally. As a psychologist specializing in treating gay men with HIV concerns, I have counseled hundreds of men working to avoid becoming infected, coping with HIV disease, and grieving both personal and community losses. As a researcher, I've conducted studies and written about AIDS bereavement. As a gay man, I've buried many of those closest to me. AIDS has been my nemesis and my teacher.

Peter Goldblum, PhD., MPH is in private practice in San Francisco. This article is extracted from Working with AIDS Bereavement: A Comprehensive Approach for Mental Health Providers by Peter Goldblum & Sarah Erickson (UCSF AIDS Health Project Monograph Series.)