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For women participating in this study, caregiving was the primary focus of their lives. For some it had become a way of life--a structure that set the parameters of the other components of their lives. For others, it was integrated into busy lives that included caring for others. Many of the women expressed the need to receive care to give care. This supportive care could be from another family member, coworker, or friend, or it could come from a support group, or even from a professional care provider such as a nurse or physician. Many women who are caring for their children, other family members, or friends with HIV are infected themselves (Hackl et al., 1997), and three of the women who participated in this study were in that situation. For these women seeking and receiving care was especially crucial to maintain themselves in the caregiving role.
Sustaining the Relationship as Caregiving
Relationships and feelings about relationships are an important focus, particularly for women (Baker-Miller, 1988; Gilligan, 1982) and maintenance of relationships constitutes much of women's work. Whereas all human relationships are constantly changing, the changes to a relationship demanded by a caregiving situation may be great and may involve major categories of work (Corbin & Strauss, 1988; 1991). As a life-threatening chronic illness requiring many life changes, HIV can have powerful effects on personal relationships, and caring for a person within the context of this disease with its social and medical connotations is a unique challenge.
Reciprocal Caring: An interesting finding of the study was the reciprocal nature of care-giving. Caregiving was a two-way process. Caregivers were aware that the care receiver often cared for them, too. Towana, who intermittently had cared for her sister Bunny when Bunny had gotten herself off drugs nearly 10 years before, was now her principal caregiver in the time they both perceived to be Bunny's last year of life. The complex reciprocity of women caring for women was evident when Towana was asked if she gave emotional support to her sister. She smiled and said: “Uh huh, yeah [chuckle]. Like I say, her frame of mind is so strong at this point she's giving me more emotional support, I think. She's helping me more to deal with her problems. She can talk about it so straightforward. She's like preparing herself. I know this is how it is.... [My son is] going on four months old, and it seems like he's doing things faster than normal She said, "I think maybe God is making him grow faster so I'll get to see him do these things, you know. And I know this is the last nephew that I'll see. And I regret that I won't ever see any grandchildren. [Dealing with losing her is] not so bad because of the way that she talks about it. I believe it would be different if she was real emotional about it; then I would be also. You know, I feel I can't--I got to be strong, keep a stiff upper lip for her. I can't just break down if she doesn't.
Role Transition: The category of role transition included the changes caregivers needed to make to be successful in the changed role. Some family members had been aware of their sons' homosexuality before they learned of their infection. For others, the two announcements were simultaneous. For family members of gay men, usually mothers and sisters, this meant adjusting to a new image of their son/brother and this could be a barrier to caregiving (Smith & Rapkin, 1996). These women had to take on the role of caregiver to a family member with a chronic life-threatening disease while dealing with the knowledge of this changed image of their son or brother as a homosexual and the years of deception implied by this secret-keeping (Kadushin, 1996). One sister expressed her reactions: "I thought we were so close. I thought, `Why didn't he tell me about it?'"
For some women, role transition meant growing into the role. It meant becoming more assertive than they had ever had to be, to be more demanding in getting care for their care receiver and for themselves. Fran, a young mother with a child with AIDS, said, “I'm a whole different person. I'm stronger. I'm more driven. If there's something I want, I get it. I don't give up as easily. I don't take "no" for an answer. I'll go over your fuckin' head.... I'll go over it. I was shy, withdrawn. No more! No time for that; I'm gonna grab the ring. There's no way I could have sat here and talked to you about this crap six years ago. I'd have laughed and joked about it like everybody else. Now it's different.”
The need for a more assertive public role was particularly necessary in the case in which women became spokespersons in the AIDS movement. These were caregivers who took on the role of caregiver to others beyond their families because they were moved by the societal ignorance and stigma associated with AIDS.
Managing Behavior: Women caregivers controlled their own responses and that of the care receiver by the processes categorized under managing behavior. Some of the strategies used to manage another person's behavior included setting limits, pointing out consequences, and offering alternatives.
Setting limits was used by the more assertive caregivers. Elyse attempted to control the behavior of Jeremy, her PLWH brother whom she believed to be mistreating their mother. This is an example of a caregiver sustaining and protecting the relationship between the PLWH and another family member, Elyse and Jeremy's mother. Elyse confronted her brother about his "exploding" in anger when he was annoyed: “[Y]ou have a tendency of doing it to my mother quite a bit, which I don't appreciate. When [you do] it to me, I don't care how sick you are, I am still going to say it: I don't deserve to be treated that way. And don't treat me that way. I'm a human being, I have feelings just like you do.”
If constructive, the strategy of setting limits was accompanied by offering alternatives. Examples of offering alternatives included suggesting acceptable outlets for anger and suggesting counseling and support group options. Pointing out consequences and offering alternatives were strategies used by caregivers in preserving relationships under stress. Pointing out consequences included such tactics as self-disclosure, saying, "This hurts me when you do it" and discussing possible future regrets. Managing one's own behavior was closely related to managing the behavior of the other in that one's own behavior was managed first, often in private. Elyse confided, "Sometimes I have to go back and calm down, so I won't blow up, ... so we can sit down like two adults and communicate."
Balancing Independence: Balancing independence was an important goal and process that emerged from the caregivers' stories. Study participants used management of their own behavior and management of the care-receiver's behavior with the conscious purpose of balancing or conserving the independence of the PLWH. Such tactics as keeping my mouth shut and holding back were particularly useful strategies for the caregivers who were trying to balance independence. In discussing her sister Beth's ability to make decisions when these decisions did not involve life or death consequences, Daphne said of her sister's ability to take care of herself, “One of the things that I am aware of is to not take that away from her.... It's not my place to say, "Now wait a minute.... You shouldn't do this or whatever," and I just kind of stay out of it.”
Managing Distance: Managing distance in sustaining the relationship occurred under the conditions of a perceived need for a change in the amount of geographic, personal, or emotional space on the part of the PLWH or the caregiver or both. In many cases adult children, after many years of independent living, had to come home to be cared for by their mothers (Boyle et al., 1997; McGinn, 1996; Peabody, 1986). Such changes in role and relationship called for creative negotiation of space. Jeremy moved home to live with his mother when his health failed. Because he needed more care than his mother could provide, his sister Elyse moved in as well so she could help out. This alteration in living arrangements and space resulted in tension and arguments over territory and privacy.
The strategy of managing distance was found in the elder caregiving literature, specifically in the study done by Johnson and Catalano (1983) in which the investigators identified distancing and enmeshment as caregiver strategies. The concept of managing distance also was noted in the findings of other researchers studying caregiving of the elderly (Phillips & Rempusheski, 1986). A form of managing distance was indicated also in a study by Carmack (1992). She found that friends and family members of PLWH balanced engagement and detachment in the context of multiple losses.
The usual scenario in managing distance was that one party initiated the change and the other responded to it. The qualities and characteristics of the previous relationship influenced the responder's interpretation of the change. Feelings around changes in personal and emotional distance included panic, agreement, abandonment, anger, guilt, and relief. Responding behaviors varied between efforts to accommodate and those to resist the efforts at managing distance. Strategies described under management of behavior, such as keeping my mouth shut and holding back, often were responses to unwanted changes in distance. Other strategies were setting limits, pointing out consequences, bargaining, offering alternatives, and appealing to justice.
For HIV-infected mothers caring for their children who would survive them, managing distance was sometimes a painful choice in positioning their child for his or her best possible future. Beth made the decision to have her son Anton spend time in another state with the aunt who would care for him after her death. Fran realized the effect her illness was having on her daughter, and said, “I have an 11 year old. I sent her to Las Vegas. She's with her father. Things weren't good [here]. [My baby's father] was using; he was stealing from me and stuff. Things weren't good at home for [my daughter]. She would bang her head against the wall and say, "I hate AIDS." And I thought, "She needs to be a kid; she doesn't need this. She's an 11 year old; she doesn't have to worry about this crap." So I loved her enough to let her go. [Her father's] a good daddy. I would never admit it, but it's too hard. It's too hard for her. I talk to her. It hurts, but you must love someone enough to do that. She had a therapist that made some headway but ... she was constantly afraid I was gonna die on her. So this way she won't have to think about it.”
Reflection Exercise #4
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