Caring for Someone with AIDS at Home

by CDC

One of the best places for people with AIDS to be cared for is at home, surrounded by the people who love them. Many people living with AIDS can lead an active life for long periods of time. Most of the time, people with AIDS do not need to be in a hospital. Being at home is often cheaper, more comfortable, more familiar, and gives them more control of their life. In fact, people with AIDS-related illnesses often get better faster and with less discomfort at home with the help of their friends and loved ones.

If you are caring for someone with AIDS at home, remember that each person with AIDS is different and is affected by HIV, the virus that causes AIDS, in different ways. You should get regular updates from the person's doctor or nurse on what kind of care is needed. Many times what is needed is not medical care, but help with the normal chores of life: shopping, getting the mail, paying bills, cleaning the house, and so on.

Also remember that AIDS causes stress on both the person who is sick and on you as you care for them. Caring for someone with AIDS is a serious responsibility. You will have to work with the person with AIDS to decide what needs to be done, how much you can do, and when additional help is needed. But, by rising to the challenges of caring for someone with HIV infection and AIDS, you can share emotionally satisfying experiences, even joy, with those you love. You can also find new strengths within yourself. But you need to take care of yourself as well as the person with AIDS.

How to Get Ready to Take Care of Someone at Home

Every situation is different, but here are some tips to get you started.

First, read this guide. Have the person living with HIV or AIDS read it. Have other people living in the same house as the person with AIDS read it. The information in this brochure is for both people with diagnosed AIDS and people with HIV infection who are sick and need care. If you have trouble understanding any of the words, see the glossary section. Words in the glossary are in bold print the first time they are used in this guide.

Take a home care course, if possible. Learn the skills you need to take care of someone at home and how to manage special situations. Your local Red Cross chapter, Visiting Nurses Association, State health department, or HIV/AIDS service organization can help you find a home care course. See the "Places to Call for Help" section for more information.

Talk with the person you will be caring for. Ask them what they need. If you are nervous about caring for them, say so. Ask if it is OK for you to talk to their doctor, nurse, social worker, case manager, other health care professional, or lawyer when you need to. Together you can work out what is best for both of you.

Talk with the doctor, nurse, social worker, case manager, and other health care workers who are also providing care. They may need the patient's permission, sometimes in writing, to talk to you, but you need to talk to these people to find out how you can help. Work with them and the person you are caring for to develop a plan for who does what.

• Get clear, written information about medicines and other care you'll give. Ask what each drug does and what side effects to look out for.

• Ask the doctor or nurse what changes in the person's health or behavior to watch for. For example, a cough, fever, diarrhea, or confusion may mean an infection or problem that needs a new medicine or even putting the person in the hospital.

• You also need to know whom to call for help or information and when to call them. Make a list of doctors, nurses, and other people you might need to talk to quickly, their phone numbers, and when they are available. Keep this list by the phone.

Talk to a lawyer or AIDS support organization. For some medical care or life support decisions, you may need to be legally named as the care coordinator. If you are going to help file insurance claims, apply for government aid, pay bills, or handle other business for the person with AIDS, you may also need a power of attorney. There are many sources of help for people with AIDS, and you can help the person with AIDS get what they are entitled to.

Think about joining a support group or talking to a counselor. Taking care of someone who is sick can be hard emotionally as well as physically. Talking about it with people with the same kind of worries helps sometimes. You can learn how other people cope and realize that you are not alone.

Take care of yourself. You can't take care of someone else if you are sick or upset. Get the rest and exercise you need to keep going. You also need to do some things you enjoy, such as visit your friends and relatives. Many AIDS service organizations can help with "respite care" and send someone to be with the person you're caring for while you get out of the house for awhile.

What You Need to Know About HIV and AIDS

If you are going to be caring for someone with HIV infection, you need to understand the basic facts about HIV and AIDS. AIDS (acquired immunodeficiency syndrome) is caused by HIV (human immunodeficiency virus). People who are infected with HIV can look and feel healthy and may not know for years that they are infected. However, they can infect other people no matter how healthy they seem. HIV slowly wipes out parts of the body's immune system; then the HIV-infected person gets sick because the body can't fight off diseases. Some of these diseases can kill them.

Signs of HIV infection are like those of many other common illnesses, such as swollen glands, tiring easily, losing weight, fever, or diarrhea. Different people have different symptoms.

HIV is in people's blood, semen, vaginal fluid, and breast milk. The only way to tell if someone is infected with HIV is with a blood test.

There is no vaccine to prevent HIV infection and no cure for AIDS. There are treatments that can keep infected people healthy longer and prevent diseases that people with AIDS often get. Research is ongoing.

HIV slowly makes an infected person sicker and sicker. Diseases and infections will cause serious illness, but people often get better — until the next illness. Sometimes, HIV can damage the brain and cause changes in feelings and moods, even make it hard to think clearly. Someone with AIDS can feel fine in the morning and be very sick in the afternoon. It can seem like riding a roller coaster, slowly climbing up to feeling good, then plunging down into another illness.

How HIV is Spread

The most common ways HIV is spread are:

• By having unprotected anal, vaginal, or oral sex with one who is infected with HIV

• By sharing needles or syringes ("works") with someone who is infected with HIV

• From mothers to their babies before the baby is born, during birth, or through breast-feeding. Taking the drug AZT during pregnancy can reduce the changes of infecting the baby by two-thirds, but will not prevent all babies from becoming infected with HIV.

Earlier in the AIDS epidemic some people became infected through blood transfusions, blood products (such as clotting factors given to people with hemophilia), or organ or tissue transplants. This has been very rare in the United States since 1985, when the test for HIV was licensed. Since then, all donated blood and donors of organs or tissue are tested for HIV.

Health care workers, such as nurses, risk getting infected if they are stuck with a needle containing infected blood or splashed with infected blood in the eyes, nose, mouth, or on open cuts or sores. In a few cases, a person sharing a house with a person with HIV infection or taking care of a person with AIDS has become infected themselves. These infections may have been caused by sharing a razor, getting blood from the infected person into open cuts or sores, or some other way of having contact with blood from the infected person. If you are taking care of a person with HIV infection, carefully follow the steps on protecting yourself from infection discussed later.

How HIV is NOT Spread

You don't get HIV from the air, food, water, insects, animals, dishes, knives, forks, spoons, toilet seats, or anything else that doesn't involve blood, semen, vaginal fluids, or breast milk. You don't get HIV from feces, nasal fluid, saliva, sweat, tears, urine, or vomit, unless these have blood mixed in them. You can help people with HIV eat, dress, even bathe, without becoming infected yourself, as long as you follow the steps described later in the section on "Protecting Yourself" later in this brochure. You do get other germs from many of the things listed above, so do use common sense.

About the Author

www.cdc.gov
The Centers for Disease Control and Prevention (CDC) is one of the 13 major operating components of the Department of Health and Human Services (HHS), which is the principal agency in the United States government for protecting the health and safety of all Americans and for providing essential human services, especially for those people who are least able to help themselves.