Excerpted with permission from the University of Washington Press, from Caring for a Loved One with AIDS: The Experience of Families, Lovers, and Friends
The bottom line of family caregiving is a relationship between two people. Usually, they know each other well before the onset of AIDS. However, these people often find that the new roles of caregiver and care-receiver have thrust them into uncharted territory. They must understand each other on new terms, rethinking their roles and renegotiating the give-and-take of daily life. And, since AIDS can change people in unpredictable ways, caregivers who met the person with AIDS after the illness began must also renegotiate how they will relate to each other from day to day.
Renegotiation may be intentional or unconscious, smooth or full of conflict. How it happens depends on the current health and emotional well-being of the person with AIDS as well as the emotional well-being of the caregiver. A gay man caring for his lover commented:
Our relationship has grown since (the diagnosis of AIDS). I think it's constantly growing and evolving, which is what I guess they say about all relationships. The relationship is definitely going through a change right now. Matt has been ill, and he is starting to grasp the reality that he may not be here very much longer.
In this chapter, caregivers describe how AIDS has changed their relationship with the sick person, and what's involved in the process of renegotiating the relationship.
Taking On The Caregiver Role
In the beginning, people are likely to form tentative images of themselves as family caregivers, and of the journey they're about to take. They ask themselves, "How will I do this? How involved will I be?" -- questions that will continue during the course of caregiving. They consider their resources, and how much they are prepared to give of themselves.
However, as they begin caregiving, very few people really understand the responsibilities and experiences that accompany this endeavor. They take on the role, later to face unforeseeable duties and hardships. This may lead them to reassess their abilities, which in turn can have a significant impact on what they will do for the person with AIDS.
Modifying Give And Take
Like any relationship, family caregiving is a transaction; a mutual exchange takes place between two people. People who are closely involved expect things from one another in day-to-day life, and expect to give something in return, whether it's emotional support, shared housework, financial assistance, or countless other favors. A caregiver who is also the lover of the person in his care put it this way:
When one person needs support, the other one is there, and it's been a two-way street. I get as much out of this relationship as I give. I guess that's the part of being in a relationship -- the more you give, the more you get out of it.
However, the illness may force the person with AIDS to give up his or her end of the bargain as energy and strength wane. Caregivers modify reciprocity, or "give and take," by adjusting the balance of favors and privileges within the relationship. A caregiver in his late forties, who brought his lover to live with him after an illness crisis, discussed the effect AIDS has had in their lives:
It distorts the relationship which is important to you, and which is in many instances built on a kind of reciprocity -- whatever balance you might have worked out. It's quite altered in ways that might not have been your choice.
The health and the functional ability of the person with AIDS influence the caregiver's sense of how much to give and how much to take. When an acute illness crisis strikes, caregivers are likely to focus strictly on the sick person's needs and relinquish their own. During calm periods in the sick person's health, caregivers are more likely to value reciprocity once again and expect a more balanced give-and-take relationship.
While renegotiating the relationship mainly concerns the caregiver and the person with AIDS, renegotiation can extend to other relationships as well. Caregivers who aren't coupled with the person with AIDS, such as parents or friends, must renegotiate with their own primary partners, friends, and families in order to accommodate the caregiving role. The mother of a twenty-two-year-old man with AIDS worked out a routine with her husband, the sick person's stepfather:
Me and my husband take turns going places. My husband went out last night, and today he's going to get his hair cut, and it's my day to stay at home. Tomorrow I get to run the streets, go shopping, then tomorrow night we're going to a birthday party so my mother is going to come stay here. We get someone to come in and look after him, then we get a chance to do something together. But, it's been really hard on our marriage. I could see the stress this could put on a marriage, if people aren't strong.
Taking Care Of Yourself
As much as some caregivers wish to be selfless, it's very difficult to suspend completely your own physical and emotional needs: as one caregiver put it, "We're not Mother Theresas." The contradiction between altruistic intentions and human needs of caregivers surfaces quite often. A caregiver may be reluctant to take care of himself or herself, as this lover of a person with AIDS noted:
I feel guilty because I need time away. That is a bit much, you know, after you spend three days straight with him. I feel guilty lots of times when he's not feeling well and (I make) a choice to go out and do something for myself. But it's at a point that I really do feel I need some space.
The desire to please the person with AIDS at all costs can keep the caregiver from even considering that his or her own needs may be as important as the sick person's care. However, most family members who remain in the role of caregiver eventually learn how to care for themselves while caring for a person with AIDS. Support groups and counseling, caregiver courses, and encouragement from close friends can confirm the legitimacy of the caregiver's attention to his or her personal needs, even those that might contradict the wishes of the person with AIDS. A middle-aged man taking care of his lover described how he handled this problem:
In our support group people have gotten into hassles with their sick lovers because the lover doesn't want strangers coming into the house, and I'm really strong in representing the view that you just tell the person, "Well, I'm doing it because I need the assistance. I can't clean the house, and the person is going to come in to help me with this problem -- it has nothing to do with you. I don't need your permission to decide whether I should wash the kitchen floor, or study for my exams that are coming up, or deal with my business, or whatever."
Getting Support From The Person With AIDS
If the caregiving relationship is indeed a two-way street, how much support may the caregiver appropriately expect from the person in his or her care? Most caregivers eventually become comfortable expecting something from the person with AIDS, unless the person with AIDS is quite mentally or physically debilitated. One type of support caregivers may want is concrete assistance; for instance, they may ask the person with AIDS to do the laundry while the caregiver is at work.
Other caregivers may want the person with AIDS not to do tasks, and instead save the precious commodity of energy for activities with the caregiver. Honoring these requests can become a sensitive issue in relationships, and conflicts may arise when the person with AIDS ignores them. For example, the caregiver may feel betrayed when the person with AIDS overexerts themselves doing household chores in order to feel "useful," and is then too exhausted to enjoy activities with the caregiver.
A caregiver usually wants to feel that the person with AIDS is grateful for the work he or she is doing; in fact, gratitude from the person with AIDS is an especially important type of support our caregivers mentioned. Unless the person with AIDS is significantly disabled, caregivers often expect the person with AIDS to treat them well -- to speak kindly, and to try to understand the caregiver's point of view. Caregivers in our study wanted common expressions of caring, such as appreciation, listening, emotional support, and interest in their activities and well-being.
The sick person's expression of concern can be a notable reward. One caregiver in his twenties who was caring for his partner of seven years felt frustrated and hurt without that attention:
I had a lot of things to tell him, all the things that had been going on while I was gone, and he wasn't responsive like I wanted him to be. You know, I wanted feedback. I wanted to hear whether I did something right or wrong, and I just wasn't getting it. I'm not sure if he was really listening, and that's happening a lot more these days.
Coping With Dependency
The ability to rely on another person for help or support is a vital component of close relationships. In caregiving, however, this reliance becomes more intense and less reciprocal. As the sick person's dependency on the caregiver increases, their connection can start to resemble a parent-to-child relationship. One caregiver, who had already raised a teenage son, felt reluctant to go through the same experience with his sick lover:
Having been a single parent for all these years, I did not want another situation where it's like having another kid, which of course it is. And that's been difficult.
Increased dependency is difficult because it may diminish the self-respect of the person with AIDS, increase the burden of responsibility on the caregiver, and erode the pre-existing, patterns of give and take in the relationship. Even parents caring for a younger child with AIDS may feel overwhelmed by the additional dependency that accompanies a terminal illness.
The amount of dependency shifts with the ill person's health. Children with AIDS who aren't feeling well may want to be held more. Adults with AIDS may simply want the caregiver to be more accessible. Certain manifestations of AIDS, such as mental impairment, may take away whatever independence the sick person has and greatly increase his or her needs for constant care. The parent of a young man with AIDS who lives with him noted the extra attention a person with mental disability needs:
You can't leave him alone too long, because you never know how the mind's going to be. Like, one time I went to sleep, and I thought he was in the room, and he had checked himself into the hospital.
Caregivers are usually willing to accept more responsibility during heightened illness, and to put work, school, or other relationships on hold while they devote themselves completely to the person with AIDS. As the sick person's health improves, most caregivers are willing or eager to let go of some of this responsibility, and let the person with AIDS do as much self-care as possible until the next illness crisis.
Dependency can cause tension between the caregiver and the person with AIDS as they try to work together to manage the illness. A caregiver may become frustrated with the sick person's unwillingness or refusal to accept help. One woman struggled with her need to please her partner:
I work very hard on something, and it doesn't taste good to him, and I'm just angry at the situation. You try to give him some good information, or something the doctor has said, and they don't want to hear it. You're trying to do the right thing for them, and sometimes nothing is right. It's frustrating.
To balance both their own and the sick person's discomfort with dependency, caregivers often attempt to foster independence in the person with AIDS. In fact, some caregivers invest considerable energy to make sure that the person with AIDS can continue self-care for as long as possible. One lover noted:
I'm letting him deal with [taking medicines]. You have to be real subtle and sensitive. They say it's an important thing for him to take medicines at the right time and so forth, but it's almost as important for him to be in control as much as possible.
When true independence is impossible, some caregivers attempt to create the illusion of independence. They may even deceive the people in their care to protect them from humiliation or physical harm and to reduce the impact of dependency without compromising their care and safety. This bank officer, accustomed to being in charge at work, outwardly relinquished control in order to help his partner feel more independent:
Even though I let him be in charge of his medicines, I knew what was going on with each one. I check up on him without letting him know by counting his pills.
Relationships, especially intimate ones, are rarely smooth. Struggle and conflict are inevitable as two individuals create and maintain an environment which affects them both. The challenges and difficulties of having AIDS and caring for someone with AIDS can accelerate conflicts in a relationship. The stress of AIDS can especially aggravate pre-existing issues or conflicts, as this caregiver, a political science graduate student, noted:
AIDS exaggerates people. Every kind of emotion or feeling is magnified; whatever kind of idiosyncrasies you have ever had are magnified. One of Rob's is an abandonment thing; I'm not exactly sure where that comes from, perhaps his last relationship he was in before me. And so it seems like there have been times since he's had AIDS where what I think are really innocuous things have become big for him. I think, "Who is this person? Why didn't I know about this before?"
Friction between the caregiver and the person with AIDS can become more intense as pressures accompanying the illness escalate and patience decreases. Caregivers can become unhappy with certain facets of the sick person's behavior toward them. They may feel the person in their care tries to manipulate or take advantage of them. One young woman caring for a friend wrestled with the problem of where to draw the line with him:
I think he can do more when I'm not there. Often he won't eat, and it feels a bit manipulative, just because that's a role that's played between the two of us.
However, the knowledge that the person with AIDS may soon be gone often motivates caregivers to minimize conflicts and resolve differences peacefully. And, sometimes, sheer exhaustion or the need to preserve his or her own energy causes the caregiver to defer to the person with AIDS.
Caregivers note that they become more patient; they're more likely to give in to the person with AIDS during an argument and let go of resentments that arise. They may choose not to become angry, not to express negative feelings to the person with AIDS, not to point out the sick person's irritating behavior. Flexibility, tolerance, and forgiveness become important tools for minimizing conflict. A caregiver in his forties, the lover of the person with AIDS, understood this well:
You have to deal with aspects of the relationship in a way that doesn't allow some of the techniques that you might use with a more healthy person in a relationship. You have to tolerate it and work around it.
A common strategy caregivers use to keep the peace is carefully "choosing battles." Some things they might have argued about in the past are no longer worth the struggle; caregivers decide which issues are important enough to fight over and which can be let go. This new approach to negotiation helps the caregiver consider which topics to avoid, how best to speak to the person with AIDS, and when to defer to the person with AIDS during an argument.
Choosing battles also means excusing the person with AIDS for his or her less-than-desirable behavior. Caregivers work hard to understand how difficult life must be for the person with AIDS. They often regard the sick person's unkind words or self-centered behavior as reactions to the illness, and they try to help others have a similarly accepting attitude. This outlook seems particularly important when the person with AIDS has some illness-related mental damage and unexplained behavior. One mother tried to help her husband cope with these symptoms:
My husband gets real frustrated with our son, and I have to remind him that Bob is not himself, so it's not his fault that he's like that.
A caregiver may feel an urgent need to get along well with the person with AIDS, and to interact with him or her in a positive way. With careful management, conflicts may be replaced with a new sense of teamwork and harmony within the relationship, as this gay man observed:
Our relationship was very good in lots of ways, but [caregiving] has heightened and developed and strengthened the relationship. A lot of it is very poignant and very beautiful and very bittersweet.
Minimizing conflict and maintaining harmony within the relationship is not without its costs. These costs become more apparent to caregivers as the person with AIDS becomes sicker or as the duration of caregiving increases. Caregivers may begin to feel resentful and angry about constantly having to accommodate the person with AIDS and keep the peace. However, caregivers are usually reluctant to show their anger to the people in their care, so they find other ways to deal with it. Many caregivers find support group meetings and caregiving classes outlets for communicating their frustration. Others may suppress their feelings, expressing them through physical symptoms such as headaches or ulcers, or taking them out on people in their other relationships.
Abandoning The Caregiver Role
For some caregivers, the relationship with the person with AIDS may become so uncomfortable that they eventually decide to abandon the caregiver role, or place the sick person in an institution. And, it is important to note that some people are unwilling or unable to become a primary family caregiver. Even for those who actively assume the caregiving role, the question of whether to remain in this role may resurface periodically. Although most of the caregivers reported that they intended to continue with caregiving until the sick person's death, a small number considered leaving the role before then. For these people, the costs of the relationship outweighed the motivation to stay.
Some people caring for lovers were rejected by family members who didn't approve of the sick person's homosexuality or drug use. Other found that the relationship they had with the person with AIDS before diagnosis just wasn't strong enough to withstand the added strain of illness. Some caregivers couldn't cope with the sick person's emotional responses to the illness or the symptoms of HIV, especially mental impairment. One man decided to leave his partner because staying with her simply became too difficult:
They said they were going to release her [from the psychiatric ward of the hospital], and I said, "Okay, but if you guys are going to release her, then I have to tell you I don't think that I've had enough time away from her where I feel well. I don't think I feel safe around her because of her violence and rage. I do feel fear. Therefore, I'm going to have to take the initiative and choose to not be around her any more." I said good-bye, good luck -- and I took off down the street.
Caregiving is a tough job for everyone involved, and it can be difficult to keep a relationship together through the incredible strain of a life-threatening illness. Caregivers find it helps to anticipate potential problems, to choose battles carefully, to recognize that increased conflict often reflects a normal reaction to the stress and fear of their situation, and to live one day at a time.
Things To Think About
- Changes in your relationship with the ill person are inevitable as his or her health changes. Old expectations and patterns of being together may not work any more. Develop new ways of relating to each other. For example, give your loved one more slack, but don't let him or her take advantage of you.
- Sometimes the sick person may forget that you have needs, too. It's okay to remind the person with AIDS about things that are important to you.
- It's natural to want appreciation from your loved one for all the things you do. Let him or her know that a "thank you" can go a long way. Seek affirmation from other family members and friends; let them know it's important to feel appreciated.
- The amount of help the sick person needs from you will ebb and flow. These changes can be difficult, and will require you to shift the amount of responsibility you assume. Remember that persons with AIDS may lose some self-respect when others do for them what they used to be able to do for themselves.
- You and your loved one are under stress, and conflict is natural and likely under these circumstances. "Choosing your battles" can help you keep the peace without sacrificing what is important to you.
- It's natural to question your commitment to caregiving -- it's part of the response to the difficulties that may occur. Ultimately, it is your right to decide whether you feel able to take care of your loved one.
©1992 by Marie Annette Brown and Gail Powell-Cope. Used with permission of the University of Washington Press. To order, please call: 206 -543-8870.
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