In general, people facing death continue the process they began in response to depression and fatigue. They concentrate their energies on what is possible. They let go of some things they had wanted, mostly long-term career goals. They take control of their own attitudes: they decide how to live with their limits in life and still feel satisfied. In short, they balance living and dying.     In a way, they seem both to live and to die at once. Not only did Helen plan her trip to the beach the following summer and buy beach clothes, she also celebrated Mother’s Day in December—”In case I wasn’t here,” she said. Steven says his life is “back to normal,” and he doesn’t “sit around waiting to get sick,” but he doesn’t “order things that will take a year to get,” either. Alan says, “I’m keeping myself healthy and trying to keep the disease from getting worse”; he also says, “I won’t enroll in night school, I’m afraid I couldn’t finish.”     These people are not contradicting themselves. They are dealing with two facts; one is that they are dying, and the other is that they are still alive. They have to live recognizing both death and life. “I need some help dying,” said Dean. “But I also need help with living until I die, graciously and with dignity.” In fact, people have always had to learn to do this. Everyone has to figure out how to stay alive and still be ready for death, how to approach dying and still live the rest of their lives.     Eventually people say that they have always known how. At some time in their lives, they have had to accept the inevitable with courage and grace. “If we have not known how to live,” wrote Montaigne, “it is wrong to teach us how to die, and make the end inconsistent with the whole. If we have known how to live steadfastly and tranquilly, we shall know how to die in the same way.” Lisa’s husband said the same thing, that he would die as he lived, by paraphrasing the Bible: “I know I came into this world naked and I will go out naked.” The person who has lived is the same as the person who will die. If you know yourself at all, you know how you will die.*226\191\2*

Some hospitals, clinics, and HMOs, especially those in large urban areas, have comprehensive programs of care tailored to the specific needs of people with HIV infection. The goal of comprehensive care programs is to provide all the care needed by a person with HIV infection in one setting and under one roof.     The type and extent of services provided, and the type of specialists available, vary from one program to another. The people and programs in comprehensive care programs can include HIV counselors, medical specialists, support groups, home therapy programs, dietitians, psychologists and psychiatrists, social workers, case managers, hospice care programs, drug rehabilitation programs, and dental care. Most comprehensive care programs will have some but not all of these services.     HIV counselors are specifically trained to provide information about HIV infection, especially information about the progress of the disease, the meaning of a positive blood test, and information on preventing transmission. These counselors also give advice on where, in a local community, to go for legal advice, for financial advice, and for personal planning services.     Medical specialists associated with a comprehensive care program are the same experts a primary care physician is likely to consult about some of the complications of HIV infection that require specialized knowledge or a specialized procedure. The specialists most likely to be consulted are neurologists (brain and nerves), ophthalmologists (eyes), gastroenterologists (intestines), dermatologists (skin), oncologists (tumors), psychiatrists (mind), obstetricians (pregnancy), and pulmonary physicians (lungs). The specialist in a comprehensive care program may deal primarily with the specialty as it applies to HIV infection. That is, instead of a gastroenterologist who deals with all problems of the digestive system, you may find one who has a special interest in the gastroenterological problems of people with HIV infection.     Support groups offer, to a person with HIV infection, emotional support in the company of people facing similar problems. The support groups are ideally made up of no more than five to eight people affected by HIV infection who have common interests and concerns. The groups are often led by a mental health professional. The benefit of a support group is sharing experiences and problems—medical and nonmedical—that are not easily shared with others.     Home therapy programs extend comprehensive services to the person’s home. These services are most useful to the person whose physical condition is stable and who may be staying in the hospital only to receive certain types of treatment, like intravenous drugs. Nurses working in home therapy programs can give intravenous drug treatments, can draw blood for necessary laboratory tests, and do general nursing care—all at home, and all much less expensively than in the hospital. In most instances, the person with HIV infection or the caregiver is taught how to administer the drugs intravenously by him- or herself, so that visits by a trained professional are few. This style of giving intravenous drugs may sound somewhat risky, but it has now become commonplace in medical practice.     A dietitian’s job is to help people with HIV infection solve the eating problems which can interfere with proper nourishment. Eating problems are partly a result of opportunistic infections, partly side effects of medication, partly a result of HIV itself. Dietitians teach people with eating problems how to prepare meals that are highly nutritious, appealing, and provide enough calories to maintain weight and strength.     Psychologists and psychiatrists treat the array of emotional difficulties that face people with HIV infection. Some of these difficulties are serious, some short-lived; some are treatable with medications, some are best treated by talking them out. Psychological social workers, psychologists, and psychiatrists—three kinds of mental health professionals who provide somewhat different services—can determine the severity of the emotional difficulty and can decide on the best course of treatment.     Social workers and case managers help sort out many of the nonmedical problems people with HIV infection face: dealing with hospitals and insurance companies, keeping finances straight, sorting out living arrangements, and much more.     The services offered in comprehensive care programs are more likely to be extensive in metropolitan areas and in hospitals or clinics that serve large numbers of people with HIV infection. Some people, especially those in the early stages of the infection, have no need for such a complex network of services. Some AIDS physicians work in private offices but have established a network of referrals that is comparable to a comprehensive care program. Some people with HIV infection prefer the simplicity of a single physician; others prefer the availability of many specialized services. The people who most benefit from the advantages of a comprehensive care program are either those who need more complicated and specialized care or those whose primary care physicians are uncomfortable treating many of the complications of HIV infection.*156\191\2*

The nervous system has two parts: the central nervous system and the peripheral nervous system. The central nervous system is made up of the brain, where thinking takes place, and the spinal cord, which is a bundle of nerves that carries directions from and to the brain. The peripheral nervous system is composed of the nerves that bring sensory messages to the brain and deliver commands to the muscles. Both the central nervous system and the peripheral nervous system can be affected by HIV infection.     The central nervous system—primarily the brain—is somewhat more likely to be affected than the peripheral nervous system, either by HIV itself or by an opportunistic infection or tumor. The most common symptoms of central nervous system involvement are (1) mental slowing, with memory loss and impaired concentration; (2) seizures; (3) weakness or paralysis; (4) poor coordination; and (5) headache that is often severe or different from the usual headache. All of these symptoms suggest infection in the brain or meninges (the membrane surrounding the brain) and require medical treatment. In many instances, the person with these symptoms will then be referred to a neurologist, a specialist in diseases of the nervous system.     The most frequent and serious diseases of the central nervous system are toxoplasmic encephalitis, cryptococcal meningitis, lymphomas of the brain, and AIDS dementia complex. Other diseases also affect the central nervous system: Kaposi’s sarcoma, cytomegalovirus, progressive multifocal leukoencephalopathy, Mycobacterium avium, tuberculosis, and the herpes viruses.     All these diseases cause similar symptoms. Diagnosis, therefore, requires special tests. The tests usually done begin with a neurologic examination that includes a physical examination of the nervous system to determine coordination, strength, sensations, reflexes, and mental functioning. An important laboratory test is a lumbar puncture, also called a spinal tap. The lumbar puncture is done to obtain the cerebrospinal fluid that surrounds the spinal cord and brain; the fluid is then examined for any inflammatory cells or microbes that will provide clues to the diagnosis.     Other major laboratory tests are computerized tomography (CAT scan) and magnetic resonance image (MRI) of the brain. Both tests are methods of viewing the brain in three dimensions to look for specific changes. These changes indicate the location of the problem and its probable cause. Diagnosis of central nervous system problems, then, is based on the symptoms, the results of a neurologic examination, the results of examination of the cerebrospinal fluid, and any changes in the images of the brain.     Many diseases of the central nervous system can be treated successfully, especially early in the course of the disease. Many of the symptoms suggesting central nervous system infections, however, occur even when there is no problem in the central nervous system at all. Weakness, seizures, and mental changes, for instance, can be caused by medications, changes in the balance of electrolytes in the blood, and fever due to some other infection. Particularly difficult to sort out are headaches: 90 percent of all people, with or without HIV infection, have periodic headaches.     The final part of this section on head and nerve problems will discuss the problems HIV infection causes with the peripheral nervous system.*130\191\2*