HIV: ON DYING-THE DYING PERSON AND THE CAREGIVER
People who are dying and the people caring for them ask difficult questions of each other, and say things they always meant to say to each other, and cry together. They find these things comforting—people feel better knowing someone else is concerned or is having the same feelings. Both the people who are dying and their caregivers find it a relief when someone sincerely asks them, “How are you?” Dying people and their caregivers want attention and companionship. They want to be taken seriously. They want to know that they need not be alone. People facing death together often grow closer.
This is not to say that their interests always converge. They have to solve some real problems. One is that they may be experiencing different “Kubler-Ross” responses at the same time. When, for instance, one person is accepting death and the other is denying it, they will probably feel alienated from each other and find communication difficult. They may solve this by accepting that the other person’s feelings are as compelling as their own. They try to treat the other person’s feelings as facts, at least temporary ones, that require respect. In extreme circumstances like these, people have only the feelings they can afford to have, and they feel things only when they are ready. Sometimes they have had enough of HIV infection and death, and they need to take a break for a while. Sometimes they are ready to think and feel and talk about what is happening to them.
Another problem for the caregiver is knowing when the dying person wants to talk about what is happening and when he or she needs to ignore it. The best the caregiver can do is listen for cues. Cues are when the person begins talking about his troubles or what he has read about dying or how tired she is or that she is frightened, or how to deal with the business of leaving the world. Then the caregiver can say, “How can I help? What would you like to do?”
A second problem is that the normal balance of the relationship begins to change. Dean is not yet close to death, though he and his partner are aware that he will die and they discuss it. “My partner is going through a hard time right now,” said Dean. “Not only is he concerned about me, but he also just had to put his mother in a nursing home, and he doesn’t get along with his father and sister. So now he’s telling me, ‘I need you. Don’t go anywhere for a while.’”
When Lisa was in distress because her husband was dying, she found herself asking him for comfort. From the outside, this seems odd: surely the caregiver should not ask for help from the dying. But in fact, it is an entirely natural extension of the relationship between people who care for each other. People in a relationship normally take turns. Sometimes one is the comforter, the helper, the listener; sometimes the other is. The problem is that for the person close to death, this sort of give-and-take becomes too heavy a burden. When death is imminent, the balance of responsibility begins to shift to the caregiver.
Caregivers need to begin to forgo the luxury of asking for help with their own fears and worries. They need gradually to stop coming to the dying person with both minor irritations and profound troubles. They listen. They ask questions: “Are you comfortable enough? Are you
upset? What do you fear?” They let the dying person cry, and are silent or cry with him. They let the dying person express her fears and fantasies, and help test fears against reality. They say, “I will try to do what you like. How can I help?” They hold and touch the dying person whenever they can and as often as the person wants.
A common ground rule is that the dying person calls the shots: when to stop working, when to get another x-ray, whether to answer the phone, which friends to see and when, whether to make decisions, when and where to talk about their feelings about what is happening to them. The caregiver can argue, but the decision rests with the person who is dying.