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Tasks for Friends and Family

An excerpt from Good Doctors, Good Patients, by Judith Rabkin, PhD, MPH, Robert Remien, PhD, and Christopher Wilson, PhD, MPH.

Comment

Relationships, while enriching, are often complicated. When a friend or loved one becomes ill, such complications can become overwhelming. Those who care for and about people with AIDS need to recognize the double-edged effects of sympathy and the realities of social awkwardness and embarrassment; they need to set limits and to accept the possibility of emotional withdrawal. Most of all, they need to be ready to face the intense passions -- their own and their loved one's -- evoked by HIV infection, such as envy, guilt, fear, and all-encompassing anger. For the person whose friend, son, daughter, sibling or life partner is ill, balancing ambivalent and often multilayered feelings can be a complex and challenging -- and ultimately enriching -- task.

Human friendships and attachments are complex by their very nature and in the best of circumstances. In the context of HIV, unresolved issues, inconsistencies, and contradictions become magnified, and a host of new issues, specific to this chronic illness, often emerge. This chapter focuses on potential difficulties and novel challenges that may arise among people affected by AIDS, and describes strategies that have been found helpful.

The term "family" refers to those people one turns to for help and guidance, and who willingly accept these roles. While the term usually refers to one's biological "family of origin," including parents, siblings, and children, it may include other relatives, such as grandparents, cousins, aunts, and uncles. For many people with HIV illness, family consists of biologically unrelated peers in their community. Gay men often have "reconstituted" families, including other gay men and lesbians, with whom the standard holidays are regularly celebrated. Former drug users may have reconstituted families consisting of people they have met through 12-step programs and support groups. And for those who are ill, family may include buddies and caregivers to whom they have grown attached. A broad but useful definition of family as "all those people who decide to go through this experience with their loved one" was given in The AIDS Caregiver's Handbook (Eidson, 1988, p 91).

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Several of the issues addressed in this chapter were thoughtfully explored by a man named Richard who was himself living with AIDS amidst a crowd of friends and family. We turn to his voice throughout this discussion.

Humans Are Social Creatures

Some people live their lives as loners, with only superficial ties to those around them. Most, however, are connected in some ways to other people. If someone develops HIV illness, everyone in his or her life becomes somehow involved. Even those who deliberately divorce themselves from their HIV-positive friends or relatives are "involved." Richard explained this phenomenon, "Those who willfully look in other directions can only be said to speak loudly in their silences...."

In a commentary about friendships and AIDS, Richard began with this observation:

Contrary to the standard media image of the solitary AIDS sufferer, AIDS happens not only to an individual, but to the people who surround him or her as well. This group of caretakers may be made up of a traditional family. More often it's composed of a more diverse [group]. Sometimes it's a combination of family and friends, often leading to struggles and tensions. Certainly the group includes doctors, nurses, therapists, support group members, homecare health attendants, neighbors and tenants of a building, even strangers, who for various reasons volunteer to come face to face with this devastating illness. For AIDS is happening everywhere. AIDS has changed the world, there's no going back. The catastrophe has already happened. Cruelly perhaps, even those fortunate enough to survive the pandemic physically will also "live with AIDS" for the rest of their lives....

The tasks of friends and family are not simple, in part because they often entail novel situations and roles. Basically, the "job description" is "to stand by, to do whatever can be done, to comfort...." (Thomas, 1992, p 48).

At the Beginning

When people first learn that a friend or family member has HIV illness, they may err in the magnitude of their reactions in two ways: they may avoid the person (for whatever reason) or they may be overly solicitous. Although the former is sometimes expected, surprisingly, the latter also occurs. Then, ironically, instead of having to deal with rebuff from family members, the patient may need to ward off excessive attention and constant queries. It may require some practice and mutual adjustment to reach a comfortable balance between expressing interest and concern and being intrusive. A common mistake made by those close to an HIV-positive person is conferring "patient" status prematurely.

A few people, for whatever reason, do seem to withdraw their friendship upon disclosure of HIV-positive status. Although this is a hurtful response, most HIV-positive people eventually conclude that true friends are those on whom one can depend, especially in hard times.

Breaking the News

The complexities of disclosing one's HIV-positive status and techniques for doing so have been covered elsewhere in this book (Chapters 7 and 12). The announcement itself is usually greeted with varying degrees of shock and disbelief, depending on the listener's level of surprise. Particularly among unsuspecting parents, there may be tears accompanied by guilt and anger. The "discloser" should be composed and self-possessed when imparting the information. If he or she bursts into tears, the despair will be contagious, and the situation will be viewed as a calamity. Anticipating the "listener's" fears and preparing answers will help both parties maintain control and perspective. Questions should always be encouraged.

A really graceful response of a loved one, upon hearing the news, ideally, would be to hug the person and say in effect, "I love you and I'll help in any way I can." Most relatives and friends, however, experience some degree of shock and need time to adjust to the news, as did the HIV-positive person him- or herself. It is certainly also appropriate to express sadness, but not to fall apart, demanding comfort and consolation. In fact, the likelihood of the latter reaction actually keeps quite a few HIV-positive people from telling their parents, since this anticipated additional burden is more than they feel ready to handle.

Everyone Needs Support

Everyone needs support when someone he or she cares about is in trouble. Friends and family are understandably upset, sad, angry, and distraught when they learn a loved one has HIV illness. However, when the HIV-positive person announces the news, or starts to become seriously ill, or is first hospitalized, he or she should not be obliged to comfort others. Although some may find the role of "comforter" helpful in dealing with distress, as a rule, the focus should more appropriately be placed on the needs of the infected person. One man, wise to the experience of illness as a result of numerous hospitalizations, ordered a t-shirt with "THIS IS ABOUT ME" printed across the chest. He wore it in the hospital to emphasize to his friends that they weren't supposed to turn to him for consolation, entertainment, or diversion in this setting. In any event, the person hearing the news should bear in mind that the individual always most in need of support is the HIV-positive person him- or herself.

"Being There"

In addition to expressing concern and interest in the infected person's health, it is important for friends to express reassurance that the relationship will remain unchanged. People need to know that their friendship is valued, that their company is appreciated, and that they still have interests and activities in common with their friends. Even if there have been lapses in the past, friends should make an extra effort at this time to be reliable and dependable.

Discretion

A promise of confidentiality is paramount. Anyone who is close enough to the individual to be informed of his or her HIV-positive status should not betray that trust. Being HIV-positive still carries significant societal stigma. Friends and relatives should not gossip about the person's condition with mutual friends, unless there is a compelling reason to do so (e.g., inappropriate and self-destructive behavior on the part of the infected person).

Living a Normal Life

Diagnosis of HIV infection does not, and should not, require immediate changes in one's routine. Friends and family can help to preserve normalcy by maintaining enjoyable customs, patterns, and shared activities. No lifestyle changes may be necessary for several years at least, and in this context, sameness is often reassuring.

A future orientation is an essential part of normal living. The HIV-positive person should be supported in his or her future plans rather than warned of impending decline. If people with HIV look forward to returning to school, getting professional training, or seeing their children grow up, the anticipation itself may be pleasurable.

One of the key ways in which friends and other loved ones maintain normalcy is to treat people as people, not as patients. One man explained the difficulties and discomforts caused by HIV-negative people when they insisted, no matter how lovingly, on relating to him as a person with a disease:

With people who are negative, people from the "outside," I have to be careful with everything I say because either they're going to get hysterical about something or misinterpret whatever I say as having a drastic meaning. I can never just say anything lightly. My HIV status is always part of their agenda. They can never look at me without seeing AIDS, the medical condition.

For example, the daughter of one friend who passed away kept wanting to come see me and bring me food. Last time she said that, I said, "Damn it, let's just go out for dinner, or I'll cook something." And she said, "Well, do you think you could, physically?" And I said, "I don't know why not, I do it every other night of the week."

People start to cling, and that is uncomfortable. It's like clothes that stick to you. Sticking is uncomfortable. I find myself reassuring people too often, "It's okay I have AIDS. Don't worry about it, I can handle it." My feeling is, "Don't keep reminding me. I feel good today, so don't remind me I may feel bad tomorrow."

When Illness Becomes Chronic

Setting Boundaries, Defining Limits, Giving Cues

Although one should not suddenly be transformed into a "patient" simply by virtue of informing others of one's HIV-positive status, eventually adjustments become necessary. Relationships are bound to change as a person becomes ill. Nevertheless, acknowledging the increasing infirmity and consequent dependence of the ill person can be very difficult for all concerned.

Many people don't know how they should act or what they should say. In fact, one reason people tend to avoid their ill friends is simple social awkwardness. Embarrassment probably motivates a lot of behavior. It may help for the HIV-positive person to give straightforward instructions and just tell people what is needed. Friends and family might also ask what is wanted or simply express their discomfort by saying something like, "I feel awkward talking with you about this, but...." If offers to help are regularly rejected, a friend might say, "I'd like to be helpful but it seems I'm always being turned down. How could I be most useful?" Most of the time, it is more effective to ask than to guess or to remain silent.

Richard's effort at writing about friendships was inspired by a friend. He shouted at him:

"So you have AIDS -- what do you want me to do about it?" That really left me wondering. What do I want other people to do? What can they do? I never really thought about that before. This episode happened just last year, so it was 4 or 5 years into my illness before I really began to wonder what it is that other people can do. I guess for all those years before, I and all the people around me were sort of on automatic, just doing things we thought we should be doing, but not really thinking about it. That question, you know, created a lot of distance between my best friend and me. But it also made me realize that I hadn't been thinking enough about what it was I needed or wanted done and what it was that other people could or would actually do.

Expectations should be, and almost invariably are, different for different people. Some relatives and friends may be totally available, both emotionally and physically. Others may have limited resources to share. Those who cannot be 100% involved can still have meaningful interactions and relationships. And regardless of how available or involved people can be, general good manners like courtesy and respect for privacy and independence may be expected from everyone.

When a loved one becomes ill, we may believe that, even as love may be unconditional, so our willingness and availability to help, or to simply "be there," also ought to be unconditional. In real life, however, this is rarely possible, even for partners or other household members. Not only do most people have obligations that cannot be indefinitely suspended, but also as the person with HIV illness gets sicker, it is nearly impossible for one person to provide all necessary care. The notion of "doing it all" alone is neither wise nor feasible.

Sometimes in a crisis, friends or family make offers of assistance that they later regret. In the long run, however, it is kinder to set reasonable boundaries than to renege on impossible promises or to resent the all-consuming demands of the caregiver role. It is often helpful to ask specific questions before offering assistance with a proposed task: How much time will it take? How often? Will there be a back-up? Reliability is essential in this context: Deliver on all promises, but promise only that which can be delivered.

Staying the Course

While friends are cautioned against total sacrifice to the care of the sick person, it is also a particularly painful time to disappear. In the face of illness progression, the person with AIDS especially needs to feel others can be counted on. One man with long-term chronic illness said,

My boyfriend did this really weird disappearing act. He just faded. Finally I cornered him once, and he let me know that I was getting to be kind of a drag to be with, and that's a quote. And I said, "Honey, AIDS is a kind of major drag. I couldn't agree with you more." He just couldn't handle it emotionally. The odd thing is that he's [HIV] positive. He's not running for fear of contagion. What he's afraid of is seeing what will happen to him.

AIDS is a terrible disease. Friends and loved ones who continue to share themselves with the infected person should be appreciated and cherished. For those who stay the course, there may be heartbreak, but there won't be regret.

How to Help

Either during an acute illness, as in the period after hospital discharge, or when illness becomes chronic, the issue of providing practical assistance arises. While a few people become dependent prematurely, more often the converse is the case: People may truly need help but don't want to acknowledge or accept it. For friends, this situation is perplexing: Do you wait for someone to ask for help? Do you ask whether he or she wants help? Do you simply plunge in and help without being invited? Interfering with a person's autonomy and privacy in order to address perceived unmet needs is again a question of boundaries. What must be clarified is exactly whose needs are being addressed. In general, friends should make clear that they are not "taking over," but are merely doing whatever legwork the ill person indicates is important to him or her.

If financial resources are available, the option of hiring someone to carry out routine tasks, such as cleaning, laundry, and shopping should be considered. Alternatively, larger communities with local community-based AIDS organizations may offer buddy programs: Volunteers provide help, usually on a limited basis. In several of the AIDS epicenters, highly specialized services are available to PWAs (persons with AIDS) for the asking: free meals delivered to the home on a day's notice, dog walking or other animal care, and even weekly delivery of donated flowers (Los Angeles).

Such assistance is sometimes more palatable if it is proposed on a trial basis. And, it is sometimes easier to accept such services from a person being paid to do them than from a friend or partner. Hiring someone is a financial transaction, devoid of emotional baggage, guilt, or obligation. Moreover, if routine tasks are taken care of, friends can visit to chat and be companionable instead of running errands.

Less intimate friends may be very helpful in late-stage illness by letting it be known that they are available for specific tasks. For example, one friend with a car and a flexible work schedule might be able to provide transportation to the physician's office or clinic. Another may like to cook and deliver some meals.

The person with HIV illness also must think about setting boundaries. With good intentions, people may call too often, visit too much, or stay too long. When one is ill with pain or nausea or fever, it may be more restful to be alone. This message can be communicated gracefully, without offending, and is entirely appropriate.

Responding to Withdrawal

A difficult situation may develop when the sick person stops communicating with others. He or she may not answer the phone or return messages, may not permit visitors, may not open the door if visitors do come, or may ask visitors to leave after 5 minutes. Alternatively, the sick person may just lie in bed, remaining silent and remote.

One such man, with many chronically unpleasant but not immediately life-threatening conditions, became increasingly detached and withdrawn, staying in bed with the blinds drawn for days at a time. When his only visitor came, he said, "People only make me feel worse. I don't want to be a pet gerbil. I need to be alone. I don't want to see anybody because it doesn't give me any pleasure anyway and I'll only hurt them. I don't want attachments. I don't want commitments. I don't want ties. I feel lonelier around people, and their expectations are annoying."

What should friends and relatives do when the patient withdraws? Where is the line between appropriate concern (about possible neglect of nutrition, medication, and other essential matters) and invasion of privacy? The image of being a "pet gerbil" is disturbing because it does approximate much of the friend's or relative's role as the HIV-positive person gets sicker. The caregiver provides food and drink and a clean, warm, safe "nest." If independence is an unresolved issue for the sick person, it is easy to understand the distaste he or she may feel for the entire situation.

There is no simple or single correct response to withdrawal. Each patient or friend has to work this out individually, and again, consider exactly whose needs are being served. In general, friends should think about the stage of illness, and the presence or absence of other people in the patient's life.

During episodes of acute illness, when medical care is being provided in a hospital or home setting, friends can offer companionship, affection, support, and reassurance. Difficulties more commonly arise when the ill person has progressed to a phase when they are seldom well. During this time, he or she may have reduced energy, mobility, and stamina due to persistent symptoms, such as neuropathy, pain, nausea, and diarrhea.

Late-stage illness commonly entails a gradual detachment of interest and investment in the world in general. Social attachments may be limited to a few central people. These people may be long-time intimates, or they may be newly arrived in the life of the patient, such as home attendants or nurses.

The question for friends and those outside the immediate household then becomes how aggressively to pursue contact. If there is a partner living with the ill person, he or she may be able to provide guidance. More often, the patient lives alone. In deciding how aggressively to pursue contact, one might consider who else is on the scene. If the sick person has a few close friends who are permitted to communicate and visit, check medication, and replenish food supplies, then it might be best to step aside. If, on the other hand, the sick person is not in regular touch with anyone else, it is probably appropriate to be more insistent, even pushy, about stopping by from time to time.

Responding to Cognitive Impairment

As time passes, some HIV-positive people develop problems with memory, mental quickness, and verbal fluency. For most, the changes are mild and never interfere with daily life. There are some people, however, who develop major cognitive problems, which may be accompanied by difficulty with balance and motor coordination as well as increasing apathy and withdrawal. Personality changes also may be observed. While clear-cut AIDS-related dementia is most often seen very late in illness, it can develop earlier in the disease when people are still being cared for at home. When it does, it can create major management problems for friends and family: When to insist on visiting? When to take over responsibility for tasks like grocery shopping? When to provide supervision for meals and medication?

This situation, when it happens, is burdensome, difficult and discouraging. Help can be provided by organizing, simplifying, and structuring daily activities and tasks for the sick person. Increasing supervision may be called for, which is almost always best handled with the assistance of home aides. Sharing responsibilities with other friends and relatives in this difficult situation also helps.

Visiting

A very ill person may prefer silence. Conversation, or even listening, may simply require too much effort. The author of a classic book about the end of life wrote, "This is the time when the television is off. Our communications then become more nonverbal than verbal. The patient . . . may just hold our hand and ask us to sit in silence. Such moments of silence may be the most meaningful communications for people. . . . our presence may just confirm that we are going to be around until the end" (Kubler-Ross, 1969, p 113). Although some people forbid visits when they are in the hospital or at home ill, most appreciate the reassurance that they have not been abandoned. At such times, it is prudent to limit visits to 10 or 15 minutes. Or, the visitor may sit and read a book while the patient dozes. Sometimes, when the end is very near, the visitor can do more to support a devoted partner or the family than can be done for the patient.

Mutual Obligations

A Chinese fortune cookie advised, "In order to have a friend, you must be one." Most emotionally healthy adults recognize the mutuality of relationships. In the face of illness, however, that point sometimes can become obscured. While friends and family must respect the privacy and dignity of the person who is ill, HIV isn't a license to become a prima donna. The HIV-positive person needs to be reasonable about his or her demands of others, or the consequence may be eventual disintegration of the support system.

Maintaining a balanced relationship can become increasingly difficult as illness progresses. This was illustrated by a case of two men who had been together for many years. One was hospitalized with a serious condition for 3 weeks. He was on a special AIDS unit with an attentive and caring staff. The other supported them both, living and working at a job on the other side of town. The patient asked, expected, and demanded that his partner come across town before work to help him dress and get to the bathroom, although hospital staff were available to help. The partner was then to go to work, returning directly to the hospital in the evening to keep the patient company. At 9 or 10 p.m., the partner could then go home, which was across town. There were hardly any other visitors. The partner felt obligated, and exhausted himself trying to fulfill these unreasonable expectations. When the time for hospital discharge approached, the patient refused to have home attendants because he didn't like strangers. The partner became increasingly doubtful of his ability to manage with this very sick, frightened patient. His neediness seemed insatiable. The patient called a therapist, declaring, "I think I should commit suicide. I'm too much of a burden for Joe." Joe, the partner, in turn, called and said, "I have burn-out. I can't go on. He'll have to go back to the hospital." Clearly, the inability of either to set limits produced a mutually devastating situation that was resolved when an outsider said simply, "Home care will begin tomorrow." The situation eased and both relaxed. When the patient died soon thereafter in the presence of his partner (and home attendant), both were calm at the end.

It is in the interest of everyone to be reasonable and measured both in what is asked for and in what is given. This is hardly easy for some people even when times are good. In crisis, it can be incredibly difficult. But it is essential.

Common Emotional Responses

Sympathy: Supportive or Patronizing?

Expressing sympathy, by word or actions, appears the right thing to do, the socially expected response to someone's illness, the polite reaction in a social situation. It isn't always communicated or perceived that way, however. As Richard explained:

Sympathy, I realized, had become a double-edged sword. I thought I wanted it and had always without much thought considered it to be one of the natural virtues, but once I became seriously ill and the recipient of an enormous amount of sympathy, I began to detect something pacifying, something that seemed to promote in me a kind of passivity. Instead of murmuring expressions of sorrow and care, I began to long for people who would tell me to get off my ass and get over myself. I no longer wanted to be treated like a sick person. Such treatment only fed any nagging lethargy and death wish that I, as anyone else, might have. Where were the friends who had refused to indulge me?

Richard was on target. Sympathy is a "two-edged" response. Its positive side is intuitively obvious, but what about its negative aspects? How are feelings of pity, sympathy, empathy, "feeling for and feeling with" distinguished? When is sympathy used as a divider or means of distancing ("You're sick and I'm not"), or as a way to imply altered status ("you poor thing"), or as a way to avoid doing anything? How can one not express sympathy for someone who is loved and so sorely tried? "Tough love" or indifference seems callous and unfeeling. The individuals involved, the stage of illness, and physical condition will determine how an appropriate balance can be achieved.

Anger

Richard told this story:

"So you have AIDS, what do you want me to do about it", shouted my best friend at me late one night. We had been having dinner with another guy, a boy with AIDS who was not doing well but who laughed at all his problems and treated his illness as a big joke. My best friend laughed with him and egged him on to make more fun of what was a desperately serious situation. I grew more and more depressed and silent in the face of their merriment. As they became drunk, I became furious. After the sick boy had left, my friend and I quarreled bitterly over what seemed to me to be a shockingly callous attitude on his part -- he is HIV negative -- towards the life and death of close friends. But I also felt a certain gratitude when he shouted at me his fury and exasperations. Ah, I thought, at last some truth telling. I had minded less his anger at me for being ill, which contained within it a germ of compassion, than his refusal to express his anger. The bored, polite sympathy he offered me had seemed false because I knew he found the whole subject dreary and tiresome, and had no real interest in the details.

Those who spend time with people living with AIDS know that the latter are often angry. Friends or relatives may, on occasion, become targets, just by being there, although the anger is characteristically an existential rage about the injustice of losing one's life. In studies of AIDS long-term survivors, comparatively low rates of clinical depression or anxiety were observed; the predominant emotion elicited and reported was anger (Rabkin et al, 1993). Three-quarters of the men interviewed frequently felt very angry. Among the more eloquent responses was this one, given by a man more than 3 years after his AIDS diagnosis: "AIDS has just put a dagger in my life essentially cutting my life in half. I have not reconciled myself to it one bit. To this day I am still in a state of shock that something so awful could happen." Another man, very ill, explained: "My dominant emotion is rage. I'm mostly angry at the sheer frustration of being denied my life." As a rule, such anger can fuel a fierce determination to survive.

Anger can be adaptive in the struggle to engage the best medical care or to become involved as a political activist. Anger at physicians, the government, the loss of friends, is common. Some people are angry at themselves, with more or less reason, for becoming infected. However, if the anger is consistently and exclusively directed at friends, family, and care providers, or the medical system in general, it becomes self-defeating. When possible, volunteer work, political action, letter writing, or marching in demonstrations may represent more productive outlets for the anger that is both intense and inevitable.

What is often overlooked, unrecognized, or denied is the anger of others toward the person with HIV illness. The anticipation of the loss of a child, sibling, parent, or partner can be devastating. One man said, "My brother was angry at me for being HIV-positive and wouldn't talk to me about it. He thought that I, a college graduate, should have known better." More pragmatically, illness causes disappointments, frustrations, irritations, changes of plan. Nobody who has cared about or for a person with AIDS can completely ignore the negative feelings that sometimes arise when the illness interferes with expectations. Acknowledging -- and dealing with -- the anger is difficult, however, because it seems so petty, so unfair to "blame the victim."

The person with HIV illness also may be slow to recognize this anger in those around him. Richard observed:

It was actually my support group leader that pointed it out to me. "You know your friends are really angry at you for being sick," he said. I had actually never thought about it consciously, but when he said that, I realized that it explained a whole panorama of feelings and responses and slightly strange awkwardness between me and people that I had not really been able to identify before. You are left with the feeling that people are angry when you're ill and they like you when you're well... and that in turn produces anger in yourself, and the feeling that people will only stick around when you're OK. I also think the anger runs deeper than just irritation over cancelled plans. I think there's an anger that isn't really rational, but that says, "How could you let this happen to you? How could you bring this unpleasantness into all of our lives?" I had felt some of that towards other people with AIDS, a feeling that it's almost a personal failure on their part. It's not rational or fair and it's certainly not attractive, but it seems very powerful. That kind of anger needs to be thought about and looked at.

The person who is ill may be equally resentful of those who are HIV-negative or still healthy despite HIV infection. This anger is also difficult to acknowledge. When Richard mentioned the issue of other people's anger toward him in his support group, one person countered with a question about his anger at them for being well:

There is that also, which is another thing that isn't really talked a lot about, which is the terrible resentment I feel towards healthy people. Strangely enough, I have also felt it from other people with AIDS who were doing worse than I was. When I was in the hospital for a diagnostic procedure with people who were doing very badly -- and I was thriving -- I felt my health was this terrible conspicuous thing that I had to conceal. I'd try to look ill if I could and cough a lot. It was sort of like having feet that were too big, or wild red hair. My health was all over me and I couldn't hide it enough. Anger goes back and forth between people.

It may be particularly difficult for a person living with AIDS to acknowledge angry feelings toward those he or she counts on for companionship, affection and practical help. Friends and family might directly address the fear of jeopardizing their support by reiterating their commitment: "You can count on me anyway, even if you get grouchy or cranky at times, even if I need to take 'time off' when you get impossible." Of course, this has to be true: Reliability is an essential part of "being there" in any meaningful way.

Anger is part of any close human relationship. Illness does not exempt people from the basic courtesies of living with others. If an individual has a legitimate cause to be angry with someone else, such feelings can and should be openly expressed. But what about when friends and family experience anger at a loved one because of his or her illness? How can such feelings, common as they are, be managed? At one time, people believed in the "teapot" theory of emotions: Anger stayed inside unless you released it, like steam from a boiling tea kettle. Only when anger was let out could it be dissipated. Since then, however, it has been observed that expressing anger as soon as it is experienced may actually generate more anger than deferring its expression. Failure to acknowledge angry feelings, on the other hand, may lead to avoidance of the sick friend or relative.

Talking about the situation with someone who has "been there" can usually provide relief. Perspective, humor, and a good listener can be very helpful. And, often, we feel better after we complain: "We had this wonderful weekend planned, and then he got a fever and wouldn't even let me come over to visit."

It may also be helpful to join a support group for partners, parents, or care providers. These are becoming increasingly available as community-based organizations for people with HIV illness have come to recognize the unmet needs of those who care for and about them. Joining such a group is a more formal but sometimes extremely effective way of coping with your role as the friend or relative of someone who is sick.

What about when friends or family are the unwitting targets of rebuff and anger? A visitor, prepared to do errands like groceries and laundry, might be greeted with the words, "I don't feel like having you here or seeing you today." Or, someone who suggests going out to a show might be bitterly attacked with, "You know I'm too tired to sit through something like that." Or you are given a list of 18 things to get at the supermarket and are greeted with annoyance because you got the wrong brand on one of the items. Even when a friend is permitted to help, he or she might encounter criticism for the way in which certain tasks are done.

When this type of reaction occurs occasionally, most can handle it. If it becomes a pattern, however, it is best to approach the problem directly. Otherwise, a repetitive cycle of anger and guilt will begin that will become increasingly difficult to break.

One might say directly, "I'm trying to think of activities we'll enjoy together and you seem upset by that. Tell me what's the matter." Or, "I'm trying to be useful and all I get is attitude. So how can I help you best?" It may be as simple as a financial problem. It may be a reminder of something they used to do with someone else, friend or partner, whom they have lost. No matter what strategy is tried, it is almost always better to try something than to remain feeling miserable, hurt, angry and finally guilty for a lack of graciousness. It is also helpful to remember that anyone who experiences persistent pain, nausea, fever, and fatigue is likely to be cranky at least some of the time.

Calling to confirm a visit, even a scheduled visit, is a good idea. Reframing goals is also helpful. Instead of expecting to be greeted with pleasure, one can be satisfied with the knowledge that the sick person has an adequate supply of food, for example.

Guilt

Surprisingly often, those who are most dedicated, as well as those only peripherally involved, feel some degree of guilt about not having done enough. When a visitor finds the patient sleeping during a dreaded hospital visit, the response may be relief, followed by guilt. Or, an offer to visit may be turned down, again to the relief of the potential visitor. Worst of all, one may feel relief upon the death of a terribly ill patient, especially if his home had been filled with medical equipment, drugs, and attendants around the clock. While most people feel simply terrible for their own reaction, in reality, relief is an appropriate and fairly common response. Once it is understood as an expected and "normal" response, guilt may be manageable.

Friendships and AIDS

New Friends

Establishing new ties with someone who is ill is complicated for several reasons, regardless of one's own health status. Richard observed:

I have to hesitate a little bit now when I meet new people with AIDS. I think, "Do I want another friend with AIDS who is probably not going to make it?" It's a hard decision.

Another thing about friends who have AIDS is that [if you also have AIDS] your whole friendship becomes about AIDS. My doctor, your doctor, my pills, your pills, your stomach, my stomach -- that kind of talk can fill a whole friendship. It's amazing, you know, I've spent whole days with people like that, and at the end of it you think what a privilege, but also what a horror, sort of.

In one sense, becoming close to someone whose illness is part of them from the outset is less distressing than discovering that a long-time friend or family member is infected, and then witnessing the gradual decline. With someone who is already ill, there is an awareness, at least at some level, that this friendship is likely be time limited.

Love and Devotion

Despite the difficulties that develop in relationships involving at least one person with HIV illness, there is also the possibility of a transformation of devotion to a level of extraordinary intensity and beauty. This may occur when both partners are ill and take turns caring for each other, or when only one person is ill and the other, who could walk away, chooses not to do so.

We talked to two men about their friendship. The first statement is Steven's, a participant in the Long-term Survivor Study who was interviewed in 1990 after he had been ill for a number of years. Steven was asked, "When you were first diagnosed with PCP, was anything or anyone particularly helpful to you at the time?" He answered:

My friend. I have a friend who is my old college friend and we're spiritually very close. He's just a beautiful man. He was there for me right at the start and has been, ever since. He has dropped all of his plans for his own life in order to help me. Words cannot describe this type of person. I'm sure there are others doing the equivalent in helping people with AIDS, but nobody could have a more dedicated friend than he has been to me.

Later he was asked, "What brings you pleasure now?"

My relationship with my friend Bill. I think it validates my life. Whatever happens to me, what we've shared and the kind of love that has been shown me is a privilege that many, many people never know and for which I'm incredibly grateful. I just thank God. It validates everything I've ever done, no matter the disappointments. We have lived to the maximum in terms of a caring relationship. It is special. It marks me now. I have a great deal of pride in the fact that someone would care that much about me.

About a year later, we called for a follow-up interview and discovered that Steven had died 3 months earlier. His friend wrote the following letter: "I can't begin to describe how badly I miss him, how different and odd and new I feel to myself being in this world without him. Losing him, losing that line out into the future which the feeling of an accompanied heart always gives one, has been an even more total erasure than I'd imagined it would be...."

This exchange brings to mind a passage from St. Augustine, writing of his feelings after the death of his childhood friend: "For I felt that my soul and his were one soul in two bodies, and therefore life was a horror to me, since I did not want to live as a half; and yet I was also afraid to die lest he, whom I had loved so much, would completely die"(Confessions, 4.6).

While loss may be a consequence of attachment, most would agree that a life without the experience of intimacy is worse. In the words of Tennyson, "It is better to have loved and lost than never to have loved at all." Perhaps because of the awareness of life's impermanence, the affection between people (at least one of whom has HIV illness) can attain a purity and intensity possibly never before experienced by either. The limits imposed by awareness of impending mortality may permit the expression of an unconditional love that we fear to risk in other circumstances.

References:

Eidson E, ed. The AIDS Caregiver's Handbook. New York: St. Martin's Press; 1988.

Kubler-Ross E. On Death and Dying. New York: Macmillan; 1969.

Rabkin J, Remien R, Katoff L, et al. Suicidality in AIDS long-term survivors: what is the evidence? AIDS Care. 1993;5:393-403.

Thomas L. The Fragile Species. New York: Scribner; 1992.


This excerpt is from Good Doctors, Good Patients by Judith Rabkin, PhD, et al. Copyright © 1994 by NCM Publishers, Inc., 200 Varick Street, New York, NY 10014.


For more excerpts from Good Doctors, Good Patients, click here.



  
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This article was provided by NCM Publishers, Inc.. It is a part of the publication Good Doctors, Good Patients.
 
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The Support Needs of Caregivers
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