Barbara:

Dennis, we are so used to talking about AIDS in individuals. What is it that we need to learn and talk about in terms of HIV in relationships?

Dr. Shelby:

Well, what we need to be aware of is the high prevalence of AIDS and HIV infection in the context of ongoing relationships. When I began doing some of the research for the book, I found that I had to hunt far and low to get a sense of just what was the prevalence; that most agencies didn't keep records of how many of their patients were indeed partnered. So I asked a couple of physicians to look into their cases and what we found to both of our surprises was that at that time in 1987, 60% of their AIDS patients were indeed partnered. And what was happening in my practice back at that time was that I was being asked to work with gay couples where one of the men had, indeed, had AIDS, and this has been a very important part of the epidemic, in that HIV infection, as I said, does occur in very high rate, in established relationships. And another piece of the epidemic has been the impact on gay partners, or gay families, and the tremendous amount of caretaking that has gone on in that context and the impact on the well and the surviving partner.

Barbara:

The caretaking being done by the partner.

Dr. Shelby:

Absolutely, absolutely. That has been a very integral part. And again, we are looking at as many as 60% of gay men in established relationships. So there is a tremendous amount of caretaking going on in established relationships.

Barbara:

This must make a tremendous impact on the partner.

Dr. Shelby:

Absolutely. It's a tremendous journey for the partner and if we think about it, it's often a journey and an experience that lasts for many many years from the point of wondering if the partner is indeed coming down with AIDS, to caring for him during the illness and then to mourning the loss of that partner as well, which brings in another piece to the equation, and that is, all of our mourning theories tend to be based on models and research that has been done on middle-aged women whose husbands died suddenly of coronaries or may have died of cancer. Here we have a disease where the surviving spouse is infected, possibly infected, with the same agent that killed their spouse itself.

So, I began wondering about that as I worked with these men and wondering just what was going to be the impact on the mourning process when they too were carrying the same virus that killed their partner. And that was another one of the research questions that I was pursuing. The population I had was about 50/50, about 50% of the surviving partners were negative, about 50% were positive. And what started coming out in the research were considerable differences in the mourning process when the surviving partner was positive versus when they were negative.

Barbara:

You would not be surprised at that, I think.

Dr. Shelby:

Be surprised at it, no. I think the clinical question is what is the impact and how do we understand that impact.

Barbara:

Yes.

Dr. Shelby:

Well, it is an interesting process and again it gets back to the question of why I look at AIDS in the context of relationships. And one of the things that came across in my research, and keeps coming across, is that relationships can profoundly impact an individual's experience of their own HIV infection or their own AIDS diagnosis. Now the interesting thing that keeps coming up is that among partners or among primary caretakers, not necessarily a partner, that if they found out they were positive during the partner's illness, they tended to table it and be more focused on caring for their partner. And what happened across the board was about 6 months into the mourning process, men tended to become very preoccupied with their own antibody status. And so what tended to happen is that they were hit with a double whammy. They are in the midst of mourning and then in the middle of that mourning process, they start to realize full force that they too are infected. So they are faced with trying to sort out the loss of their partner, but also sorting out the impact of being positive for themselves.

Barbara:

When you say that they table it, does that mean they do not take care of themselves?

Dr. Shelby:

Well, not necessarily, I meant table it in a more psychological way.

Barbara:

Ok.

Dr. Shelby:

In what my current research is finding is that, again people go through phases when they find out they are HIV positive. There is an initial phase of wondering and debating whether to be tested. There is a phase of acute disorganization after finding out one's positive. And then there is a long phase of gradual reintegration. Now what tended to happen was that the men who were surviving partners got hit with that phase of disorganization around testing positive again around 6 months into mourning the loss of their partner. So here they were essentially grappling with two very different issues at once. But, the way our minds work, they were often blended together.

Barbara:

The two highest stress things that could happen to you.

Dr. Shelby:

Right. Absolutely. So what tended to happen was men and I am using the word carefully, identified their infection with the partner's death.

Barbara:

How do you mean that?

Dr. Shelby:

The assumption that I am going to die just like my partner. And that becomes problematic in that everybody is different, everybody has a very medical course, and I have a number of partners in my practice, and people that I work with on the research project, who are alive 6, 7 years after their partner died. And what tends to happen is that people become more and more organized around impending death when medically they can be very stable. And then what we have problems with is that the mourning process in a way breaks down, or stops, and what happens is that people start becoming more and more depressed. So essentially the mourning as a process stops and depressive symptomatology takes over. And that is again a very important thing to be looking at in our clinical practice: whether we work with a large population of HIV positive people and gay men or not, we never know in our practice when we are going to get someone who may be a surviving partner, the partner may have a died a year ago, and they may be profoundly depressed.

Barbara:

Now how would you tell the difference between mourning symptomatology and depressive symptomatology?

Dr. Shelby:

Well, I think there is difference. I would refer to mourning as a process rather than symptomatology.

Barbara:

Ok.

Dr. Shelby:

And the things I look for in terms of trying to make a diagnosis is if someone is mourning they may look and appear depressed. But, what you also tend to hear is efforts to modulate efforts to soothe that sadness. You hear people talk about a great deal of missing. You often hear about rituals: ritual visits to the graveside; conversations with the deceased person. You may hear about efforts to memorialize them. You will hear a process of missing, of getting sad and then doing something that helps soothe that sadness, either going to the photo albums or doing something that reminds them of the partner. You will hear a sense of process around that. But, if the mourning process is stopped what you will hear is predominately depressive symptomatology: "I feel awful," "I feel depressed." People may be sleeping too much, sleeping too little; having trouble concentrating. They will be telling you about depressive symptoms; they won't be telling you or talking about a mourning process. And at that juncture then I think a couple things need to happen: one is to assess the degree of depression and possibly refer for a medication consult; and the other thing is to clinically attempt to re-establish the mourning process. And I do that in a number of ways, and that is to try and get a sense of where the process broke down for these people. And what I hear time and time again is people talking about that they will be at home in theie study and they will kind of be reviewing what had happened-the partner and their life together, the illness, the death. And many people can actually say this, that in their fantasy life, they will come to the part, "and he died of AIDS and I am HIV positive" and boom it stops. They become anxious and they shut down. After remembering and thinking and processing, it stops. So one of the things I do is, I say, yeah, well, part of this is because you're positive and trying sense that you are positive and that he died of the same disease. The other thing is, I think that dialog with the deceased partner is a very very important piece of the mourning process. I want to hear what they talk about. I often ask people to bring in photos, so I know who we are talking about. And I will get them to start talking with me, having the same conversation with me that they have in their heads essentially, and try and get them over that hump of viewing their infection as being the same, as being one and the same as what killed their partner.

Again, the issue here is quality of life. Surviving partners often outlive their deceased partner for a number of years. What I am trying to do clinically is again to maximize the quality of their life, intervene in such a way that the depression doesn't come to dominate their life and help them to see themselves more and more as a individual in their own right.

Barbara:

Is there anything you would like to add before we stop?

Dr. Shelby:

Well, I think that the one thing I would like to add for all clinical workers is that HIV and AIDS is a disease that effects everybody. As clinicians, we may encounter a mother, grandmother, a brother, sister, someone who died with AIDS. Just because we do not work for the gay population, or we do not work with a HIV impacted population, does not mean that we are not, one day, going to be faced with a AIDS related problem: a mother who lost her son; a grandmother who has lost her son, a father who has lost his son. So I think that we all need to be aware that AIDS is a disease. Way back in 1984, Morent Bachelor in an article, talked about the ripple effect of AIDS-that someone who dies in California the family in Kansas may be impacted by that death; it was their son. So that the impact of the disease spreads all through the country in all kinds of family systems and that we as clinicians need to keep our ears out and be prepared to intervene with people whose psychological functioning has been impacted by an AIDS related problem.

Barbara:

Dennis, thank you so much. Listeners interested in ordering Dr. Shelby's book entitled, If A Partner Has AIDS, Guide to Clinical Interventions For Relationships in Crisis, may call the Haworth Press at (800) 342-9678.