When someone close has AIDS.
It is difficult to understand fully what a diagnosis of AIDS means to patients and their loved ones. Unlike cancer and other well-known, life-threatening disorders, AIDS is a disease with which most of us have had little experience. Soon, however, I believe it will touch many of our lives.
The diagnosis of AIDS is frightening. Until we find a cure, it means not only that the patient's life will be cruelly shortened, but also that his or her remaining days may be marred by chronic fatigue, loss of appetite and weight, frequent hospitalizations, AIDS dementia, and debilitating bouts of illness from unusual infections. The accompanying feelings of anger, confusion, depression, isolation, and hopelessness are intense for that person, and they spill over to affect others.
Friends, family, neighbors, and caregivers often are caught unprepared for the suffering that they also experience when someone close to them is seriously ill with AIDS. They, too, must come to terms with complicated medical situations, the practical challenge of everyday tasks, community attitudes about AIDS, and often staggering financial concerns--not to mention the wrenching experience of sharing a loved one's last days.
Recognizing that any single AIDS case affects a number of people, the National Institute of Mental Health has developed this booklet for friends, families, and others who know a person with AIDS. It addresses the fears, psychological problems, and social factors that influence everyone who is involved with someone who has AIDS. It is part of our commitment to excellent care and compassionate understanding for persons with AIDS--and for the people who love them.
It hurts when you know someone dear to you is very ill because of AIDS. In some ways the pain is as terrible for you as it is for the patient. And it is accompanied by fear and worry about being able to help the patient while attending to your other responsibilities and your own needs.
The experiences of people who have lived with, loved, or cared for AIDS patients are varied, but these people all have learned that AIDS takes its toll emotionally. Yet, with compassion, hope, determination, stamina, and help from others, many are coping with the responsibility of providing care for persons with AIDS.
This booklet will discuss what is known about AIDS, the impact of the disease on the patient and the caregiver, and what a caregiver can do to cope with the demands that the disease imposes.
On the following pages are three case histories that describe real people with AIDS and their caregivers. The first deals with a homosexual AIDS patient who is cared for by his lover. The second concerns a bisexual man who was taken care of by his wife and son. And the third deals with a woman drug user who receives care from her family and from a "buddy" she meets through a social service agency. You may wish to read all of these case histories, or only the one that most closely resembles your situation.
DAVE AND TONY
Dave and Tony have been lovers for several years. Soon after they began sharing an apartment, Tony learned that he had AIDS. In the early stages of his illness, Tony suffered extreme fatigue, noticeable weight loss, and night sweats. Then he developed a rare form of skin cancer called Kaposi's sarcoma. Lesions appeared on his face, arms, and upper torso. When the night sweats disappeared, the fatigue remained; he couldn't regain his normal weight, and the lesions were scattered over the entire surface of his body. He began wearing a beard to make the lesions on his face less noticeable, and he self-consciously shied away from strangers.
Tony has been hospitalized six times for treatment of different infections. The most frightening was Pneumocystis carinii pneumonia (a virulent
lung infection that can occur when a person's disease-fighting immune system has been severely weakened). Tony is now too ill to hold a job, but an understanding former employer continues to pay him for the occasional days when he is able to work, and carries his health insurance.
Tony watches television most of the day and appears lethargic. This worries Dave, who would like for him to take more interest in the world around him. Dave continues to reserve their spots in a bowling league for the occasional evening when Tony feels well enough to go and, recently, bought him a puppy. Tony now takes short walks with the puppy, enjoys his playful affection, and likes it when the young dog naps peacefully at his side.
Dave does all the household chores that he and his friend once shared. Before leaving for work, he prepares food for Tony and puts out prescribed medications with instructions for taking them. He carefully checks up on this when he returns home. It upsets Dave that Tony sometimes does not take his medications.
Dave is committed to his role as caregiver. He spends more evenings at home than he did before Tony became ill, and although he works two jobs, he is "on-call" whenever Tony needs him. Dave's boss has already agreed to his taking a leave of absence at some point in the future when Tony needs his full-time help.
Fortunately, Dave and Tony have good friends who visit frequently and stay with Tony when Dave needs to be away. These friends provide transportation to the hospital when necessary and sometimes lend the two men their cars. In addition, they care enough to give emotional support and offer advice.
About 6 months ago the two men visited Tony's family. It was the first time Tony spoke to them about his homosexuality and his illness. "They were great," Dave recalls. "His sisters let him hold his niece and nephew, and that meant a lot to Tony. Since then, his family visits us at the hospital and at our apartment. That has been comforting for both of us."
While attending to Tony's needs, Dave takes good care of his own health. He and Tony adopted safer sex practices even before the onset of Tony's symptoms, and they have been especially careful since the
AIDS diagnosis was confirmed. Dave regularly attends a support group for caregivers, and he stays in close touch with his own doctor. In the last 9 months he has had three blood tests for the antibodies that signal infection with the AIDS virus. All the tests were negative.
MARIA AND JOHN
John was a big man, and "so handsome before AIDS," according to his wife Maria. Even though the 3 years of his illness had been terribly difficult, his death at age 43 left her grief-stricken. She still can't fall asleep without a light on, and her eyes brim with tears as she talks about her husband's struggle with the fatal disease and her own feelings of guilt because she couldn't be at his side all the time.
It began with the skin peeling on John's hands, and then his feet. His physician admitted him to a research hospital for diagnosis and treatment. Maria said, "I knew he was bisexual; then the doctors at the hospital confirmed what we had feared--he had AIDS." John received treatment and was released from the hospital, only to return periodically as infections flared or his condition became acute.
These were traumatic times. Maria kept her husband's illness a secret for fear that she would lose her job. She desperately needed her earnings, which were their only source of income. After working all day, Maria stayed up most nights tending to her husband and kept a vigil at his bedside when he was hospitalized. She paid almost no attention to her own needs, sleeping only a few hours each night and eating very little.
Once Maria had a problem with the rescue squad, which balked at transporting her husband to the hospital for treatment even though he was obviously very sick. Maria lashed out at them, making them understand that they had a duty to perform and couldn't get AIDS from doing it. From then on, they were cooperative.
Maria worried a lot about their son Carlos. He had been aware of his father's illness and had helped to take care of him when she was not there. After his father's death, Carlos began to have trouble in school. His reading skills deteriorated and he became a discipline problem.
Maria felt that counseling might help her son, so she arranged for him to enter treatment. The boy's schoolwork and his behavior soon began to improve. Until recently, Maria denied the need to seek counseling for herself, but her attitude has changed, and she is considering it. In the meantime, she is trying to make the best of a new life without John.
DONETTA, ANNE, AND DEBORAH
A year and a half ago Donetta had a full-time job and an apartment. She spent weekends shooting heroin and cocaine with friends, but she never considered herself an addict. The drugs were fun, and sharing needles and syringes with her friends was part of the scene when they got high together.
Then Donetta began to feel tired all the time; she had night sweats, and sometimes a fever. Because she missed so many days at work, money was tight, so she moved in with a girlfriend. Seven months ago Donetta called her sister Annie to say she thought she was dying. Annie rushed to the apartment to find Donetta struggling to breathe, feverish, and barely conscious.
When the hospital gave her a diagnosis of AIDS, Donetta was shocked. She thought AIDS was a disease of gay men and "down-and-out junkies." Annie visited every day while Donetta was recovering from Pneumocystis carinii pneumonia. After her hospitalization Donetta entered a drug treatment program and attended Narcotics Anonymous (NA) meetings. She also got to know Deborah, a volunteer "buddy" from one of the city's AIDS programs.
Today Donetta lives in a shelter for women who have AIDS. Annie and Deborah visit her often and take her on little trips outside the shelter--even if it's just a short walk up the block to buy a magazine or ice cream cone.
Donetta's mother and aunt always bring food on their occasional visits. Donetta knows that they are expressing love and genuine concern about all the weight she has lost. But when her family members sometimes cry during their visits, it upsets her. The most special days for Donetta are the Sundays when her brother drives her to their parents' home for the afternoon.
Donetta has had two instances of severe thrush and a second episode of Pneumocystis. Sometimes her hands shake uncontrollably; her legs
hurt and she has almost no sensation in her feet. She used to have a clear complexion, but an adverse reaction to a treatment drug has left splotches and bumps on her skin.
During her second hospitalization, nurses appeared fearful and hurried as they cleaned the top of Donetta's foot only enough to insert an IV drip. When Deborah visited, she was alarmed to note that other areas of Donetta's feet were encrusted with dirt and dead skin. She scrubbed
Donetta's feet, rubbed them with lotion, and gave her a pedicure.
Recently Donetta met some new friends who use drugs. Donetta told
Deborah and Annie that she wants to get high with them, but so far she has resisted, and she has decided to go back to NA meetings. Donetta wants to take a class next semester, and she has begun to plan for other things she wants to accomplish in the time she has left.
Dave and Tony, Maria and John, and Donetta, Annie, and Deborah offer a glimpse into real AIDS cases. The people who shared their stories expressed hope that the experiences they revealed would help others. The names of the individuals in these case histories were changed to protect their privacy.
GETTING THE FACTS
". . . then the doctors at the hospital confirmed what we had feared--he had AIDS."
When a person receives a diagnosis of AIDS, he or she usually reacts with some degree of shock. Other reactions include fear, guilt, denial, embarrassment, and sadness. Anxiety often prevents patients from thinking clearly, and they may have a confusing array of thoughts and questions. They need honest information about their illness and about planned treatments. They must also be told how AIDS will affect their lives and what steps to take to protect themselves and safeguard the health of others.
If you are close to someone with AIDS and acting as a caregiver, you also need to learn as much as you can about the expected course of the illness, the treatments, and sources of help and guidance available to you.
You can help to avoid confusion and misunderstanding about the illness if you accompany the patient to the doctor and listen to the medical reports, instructions, and advice. It helps to take notes on this and other relevant information such as medications and schedules. Since the doctor will be an important source of information for the patient and you, you may want to ask questions about AIDS, including how the disease may
affect you and your relationship with the patient.
Information about AIDS can come from a variety of other sources. A number of organizations have developed reliable, up-to-date information services for the public. Addresses and telephone numbers for several national resources are listed at the end of this brochure. Hospitals, drug treatment centers, self-help groups, and local and State public health departments can also be good sources of AIDS information.
WHAT WE KNOW ABOUT AIDS
Scientific research has determined that a specific virus causes AIDS. A person becomes infected with the AIDS virus when it gets into his or her bloodstream. This typically occurs during sexual intercourse (anal, vaginal, or oral) or through direct exchange of blood from an infected person to another person--as might happen when drug users share needles for injection, or when infected blood or blood components are used for transfusion. Anyone infected with the AIDS virus is presumed to be infectious to others and may remain so for life. The time between becoming infected and developing AIDS may be 7 to 8 years or even longer.
Many people infected with the AIDS virus do not show symptoms of AIDS, and some may never develop the disease. Other infected people
develop varying degrees of illness, ranging from mild to critical. The severity depends on a number of factors, including the effects of the AIDS virus on a person's immune system, the individual's exposure to other infections, and the extent to which the virus invades the central nervous system.
Symptoms of AIDS virus infection can include chronic fatigue, fever, loss of appetite and weight, diarrhea, swollen glands, and night sweats. In later stages AIDS may be heralded by unusual types of cancer (such as Kaposi's sarcoma) and opportunistic infections. These infections, which include Pneumocystis carinii pneumonia, are a major danger to persons with AIDS but generally would not occur or would not be serious in someone with a normally functioning immune system.
Because people with AIDS are vulnerable to additional infections, it is important that they follow healthy habits of diet, exercise, and rest. They should avoid situations that may expose them to infectious diseases. For example, they shouldn't clean a bird cage or cat litter box because that could involve exposure to bacteria or parasites. They should be under the care of a physician who is knowledgeable about treating AIDS, and they should refrain from behaviors and activities that may transmit the virus to others.
Many people with AIDS suffer some form of impaired brain function. This can occur in two ways: 1) as a result of opportunistic diseases of the central nervous system or 2) from direct injury of brain cells by the AIDS virus.
Among people with AIDS, a common form of impaired brain function is dementia. The early symptoms of dementia are difficult to distinguish from a serious clinical depression (but would not of course be confused with a case of "the blues" . The symptoms include forgetfulness and poor concentration, a slowing of motor functions, decreased alertness, apathy, withdrawal, mood swings, diminished interest in work, and loss of sex drive. Later, some AIDS patients exhibit frank confusion, disorientation, loss of bladder and bowel control, seizures, mutism (not speaking),
and profound dementia (resembling that of late-stage Alzheimer's disease), ending in a coma.
If someone close has AIDS, you may need to learn more about what to expect of a person suffering from dementia and how to look for signs of mental impairment. This is an important problem to discuss with the patient's physician and with mental health professionals.
Some people with the AIDS virus develop a condition called AIDS- related complex (ARC). Many people with ARC are normal in their energy level and ability to work, while others are extremely debilitated, cannot work, and require help with everyday tasks. ARC patients can suffer severe emotional distress. The uncertainty of not knowing whether
AIDS will develop apparently contributes to their anxiety. All sexually active people--especially those with multiple sex partners--are to some extent at risk for infection with the AIDS virus. However, the activities which are the riskiest include:
* Homosexual and bisexual experiences by men
* Intravenous drug abuse with sharing of needles
* Sex with high-risk individuals
It is important to note that a person need not have engaged in these activities many times in order to become infected. But in general, the more frequent the risky activity, the greater the risk.
In addition, infants born to mothers infected with the AIDS virus are at greater risk, as are persons with hemophilia and those who had transfusions with blood or blood products before 1985.
IMPACT OF AIDS
For people with AIDS and their circle of family and friends, the normal daily patterns of life change. Frequent tests, treatments, and hospitalizations can be overwhelming. Life becomes more difficult as the illness progresses, and more help is needed to organize daily schedules, keep medical appointments, administer prescribed medications, and deal with routine tasks.
Few other diseases produce as many losses--loss of physical strength, mental acuity, ability to work, self-sufficiency, social roles, income and savings, housing, and the emotional support of loved ones. Often, self-esteem also fades in the wake of such catastrophic losses.
How people--including patients and caregivers--deal with AIDS depends a great deal on their past coping abilities and strengths, their present attitudes, and the care and concern shown to them by others. Counseling is also helpful to many people, and some have said they could not have made it through this difficult period without the help of a counselor. Because children of the person with AIDS also face a difficult adjustment, they too may benefit from therapy.
Some patients feel guilty about having AIDS. Some are afraid of exposure to new infections or are concerned about transmitting the disease to others. Like patients with other life-threatening diseases, some AIDS patients become preoccupied with their illness and with death. They may show such symptoms of anxiety as tension, insomnia, agitation, and lapses in attention. Also, they may get angry at themselves, at the illness, at the discrimination and stigma they experience, at the lack of a cure, at the prospect of dying, and even at their caregivers. Many people with AIDS become depressed and some even contemplate suicide. Few, however, actually kill themselves.
The psychological responses of a person with AIDS may result from the illness itself, or they may be induced by medications. Caregivers need to be sensitive to changes in the person's mood and behavior and discuss these with the physicians and counselors, keeping in mind that some people may express their emotions openly, while others may attempt to hide them.
ADVISE FOR CAREGIVERS
Taking care of a person with AIDS can become a 24-hour-a-day responsibility that is both physically and emotionally draining. If you are caring
for someone who has AIDS, you will have to draw on inner strengths--compassion, hope, determination, and stamina. You will also need to come to terms with your own feelings about the illness. This is especially important if you are just now finding out about the person's lifestyle--that is, sex practices or intravenous drug use that increased his or her risk for AIDS.
Your attitudes can have a profound effect on the care you give the person with AIDS. Understanding and sensitivity to his or her needs are critical.
It was the-first time Tony spoke to them about his homosexuality and his illness. "They were great," Dave recalls. "His sisters let him hold his niece and nephew, and that meant a lot to Tony. Since then, his
family visits us at the hospital and at our apartment That has been
comforting for both of us.
In particular, people with AIDS need reassurance that they will not be abandoned or isolated--that their families and friends care. A phone call, a visit, or a friendly touch underscores the caring. Be ready to talk with the person with AIDS about his or her feelings and illness, but also remember that preoccupation with sickness can be boring and gloomy for both of you. Therefore, let your conversation also focus on the news of the day or sports or movies. The use of humor often eases tension in the patient-caregiver relationship; it shifts the focus away from negative feelings and may even improve the ability of the person with AIDS to combat disease. Many times you will need to be an active companion and a good conversationalist; other times you will need to be a good listener or just "be there."
However, when you're living with someone who has AIDS and are trying to be helpful, be wary of helping too much. It's healthier for the patient to do as much for herself or himself as possible. To the extent that the person with AIDS is able, encourage him or her to engage in work, hobbies, and social activities. Be sensitive to his or her desire to be included in making decisions about these matters as well as about treatment.
PRECAUTIONS FOR CAREGIVERS
AIDS is not easy to catch. It is not transmitted from person to person by shaking hands, hugging, preparing and serving food, or even coughing and sneezing. No cases have been found where the virus has been transmitted by casual household contact.
Even if you are infected, however, you should take steps to avoid reexposure to the AIDS virus. You can care for a person with AIDS at home and minimize or eliminate the chances of putting yourself or others at risk if you observe some simple precautions:
* Do not share toothbrushes, razors, tweezers, or other items that could have blood on them.
* Use freshly diluted household bleach (1 part bleach to 9 parts water) or other disinfectants (hospital strength) to clean surfaces soiled with blood or other body fluids. Bleach should not be used on upholstery or carpets, and it is corrosive to metal objects. For some spills, soap and water or a household detergent solution can be used.
* Wear rubber gloves and a coverall or smock when handling materials soiled with the patient's blood, semen, or vaginal secretions, or urine or feces in which blood is visible. Household rubber gloves can be decontaminated and reused, but disposable medical gloves cannot.
* Wash soiled clothes, sheets, and towels in soapy water until no visible soiling is present. This may require several wash cycles. Water should be at a minimum temperature of 160[degrees] F, and the wash duration should be at least 25 minutes.
* If the person with AIDS has been your sexual partner, the only certain way to avoid further risk of exposure to the virus is to have no more sexual contact with that person. The exchange of body fluids--especially semen, blood, or vaginal secretions--is particularly risky. If you find it impossible to abstain from sexual contact with a person who has AIDS, it is extremely important to use a condom and spermicidal gel from start to finish.
* Be careful to avoid exposure to the patient's blood by a cut, needle-stick, or a splash in the eye or mouth. If you are so exposed, wash with plenty of soap and water, then call your personal physician. * You also may wish to obtain AIDS virus testing and counseling for
CAREGIVERS NEED SUPPORT TOO
Relatives and friends of people with AIDS also need emotional support, because seeing someone you love in the throes of this painful and debilitating illness can cause depression and anxiety. Also, because families and friends often experience the same prejudices felt by people with AIDS, many caregivers experience distress in deciding whom to tell- -or whether to tell--that their loved one is dying of AIDS.
Sometimes caregivers become so involved in attending to the person with AIDS that they neglect their own needs. Although it is difficult, you should do your best to avoid this. Try to find the support services that are right for you.
After his father's death, Carlos began to have trouble in school His reading skills deteriorated and he became a discipline problem. Maria felt that counseling might help her son, so she arranged for him to enter treatment The boy's schoolwork and his behavior soon began to improve. Until recently, Maria denied the need to seek counseling for herself, but her attitude has changed and she is considering it.
Support from counseling or psychotherapy often helps caregivers adjust to their situation and the demands that AIDS imposes. If you decide to try counseling or psychotherapy, the patient's doctor or social worker should be able to refer you to appropriate mental health services. Many hospitals, churches, and community organizations have organized support groups in which people with AIDS and their families, lovers, and friends meet to share their problems and concerns. Sharing the experiences of others in a similar situation can be comforting, and support groups are often the source of much valuable information. Some people prefer to meet in groups without patients. Others prefer individual rather than group counseling. Most caregivers agree that some kind of mental health counseling or therapy is beneficial during the illness of the person with AIDS and often after his or her death.
IF DEATH IS NEAR
The realities of impending death and bereavement are difficult under any circumstances, but especially in AIDS cases. Most people with AIDS are in the prime of their lives when they confront illness, disability, dependence, and death. Feeling close to a dying person, you are likely to experience hopelessness, sorrow, anger, or a sense of loss, and you may develop new thoughts about your own mortality.
. . . her family members sometimes dry during their visits. As a caregiver, you will need to be flexible and face a variety of tasks: you may find yourself responsible for coordinating the services of physicians, home-care nurses, and community agencies. You may need to locate a nursing home or hospice in your community that will take AIDS patients. You probably will be talking with insurance company representatives about coverage and service options, as well as helping with the preparation of insurance claims. You may also need to encourage and help the person with AIDS to execute a will, medical power of attorney, plans for care of minor children, or other financial and personal plans. And you may be responsible for making funeral arrangements. Encourage the person with AIDS to take an active role in all these matters. As appropriate, call upon clergy for spiritual support and comfort for the patient and for yourself.
Although it is painful, the experience of sharing a loved one's last days or hours can also be profoundly enriching. As you once helped the person live, you may find that you can help her or him to "let go," to find a sense of closure, and to come to terms with death. Special moments of talking, laughing, crying, touching, and embracing can give you new insights on life and death. Even when patients are critically ill and unconscious, their friends and families often report a sense of warmth and closeness just being with them, quietly accepting the approach of death as a part of life.
LOOKING WITH HOPE TO THE FUTURE
You may find it encouraging to know that there are people with AIDS who have lived with the illness for as long as 3 or 4 years after being diagnosed. Many of them are active in the effort to provide public education about AIDS. They involve themselves in support groups, serve as advocates for AIDS research, and otherwise go about the business of living.
AIDS is the number one public health priority of the U.S. Department of Health and Human Services. An intense research effort is now in progress to better understand the AIDS virus, to prevent its further spread, and to develop improved treatments for those who already have the disease. Indeed, therapies being used today were unknown when the disease was first reported in 1981. While there still is no vaccine to prevent HIV infection and the clinical development of AIDS, educational programs aimed at reducing high-risk behavior have met with some success. With continued research, and further development of treatment and educational services, there is hope that AIDS can be conquered.
FOR FURTHER INFORMATION
Information and Counseling Referral Sources
American Association of Physicians
for Human Rights
P.O. Box 14366
San Francisco, CA 94114
American Association for Counseling
5999 Stevenson Ave.
Alexandria, VA 22304
American Nurses' Association
2420 Pershing Rd.
Kansas City, MO 64108
American Psychiatric Association
1400 K St. NW.
Washington, DC 20005
American Psychological Association
1200 17th St. NW.
Washington, DC 20036
Mothers of AIDS Patients
P.O. Box 89049
San Diego, CA 92138
National AIDS Information Clearinghouse
P.O. Box 6003
Rockville, MD 20850
National AIDS Network
2033 M St. NW.
Washington, DC 20036
National Association of People With AIDS
2025 Eye St. NW.
Washington, DC 20006
National Association of Social Workers
7981 Eastern Ave.
Silver Spring, MD 20910
U.S. Conference of Mayors
1620 Eye St. NW.
Washington, DC 20006
AIDS Hotline Telephone Numbers
The National AIDS Hotline
U.S. Public Health Service
New York, New York (24 hours, daily)
National Gay & Lesbian Crisis Line
1-800:221-7044 (3 p.m. to 9 p.m.
212:529-1604 (within NY State)
AIDS is caused by the Human Immunodeficiency Virus (HIV). Recently there have been many advances in therapeutic and preventive approaches to the management of HIV infection and AIDS. It now appears that early treatment can delay the appearance of symptoms and progression of the disease. Therefore, it is important that HIV infected individuals consult with their physicians regarding the latest treatment and management strategies.
The National Institute of Mental Health (NIMH), supports research that benefits millions of Americans and reduces the burden mental disorders impose on society. NIMH-supported studies are directed at the diagnosis, treatment, and prevention of mental illness. Through this research, scientists work to alleviate suffering and bring hope to people who have a mental disorder, to those who are at risk of developing one, and to their families, friends, and coworkers. NIMH is part of the Alcohol, Drug Abuse, and Mental Health Administration, a component of the U.S. Government's Department of Health and Human Services.
This pamphlet was developed by the Office of Scientific Information, NIMH, in collaboration with scientists, physicians, therapists, counselors, family members, and friends who have cared for persons with AIDS. Feel free to copy this publication in any quantity you wish. Citation of the source is appreciated.
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|Publication:||Pamphlet by: National Institute of Mental Health|
|Date:||Jan 1, 1989|
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