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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

 


 
  


 

 

Caring for someone with AIDS

http://www.cdc.gov/

 

Introduction


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.

 

Giving Care

People living with AIDS should take care of themselves as much as they can for as long as they can. They need to be and feel as independent as possible. They need to control their own schedules, make their own decisions, and do what they want to do as much as they are able. They should develop their own exercise program and eating plan. In addition to regular visits to the doctor, many people with AIDS work at staying healthy by eating properly, sleeping regularly, doing physical exercises, praying or meditating, or other things. If the person you care caring for finds something that helps them, encourage them to keep it up. An exercise program can help maintain weight and muscle tone and can make a person feel better if it is tailored to what the person can do. Well-balanced, good-tasting meals help people feel good, give them energy, and help their body fight illness. People with HIV infection are better off if they don't drink alcoholic drinks, smoke, or use illegal drugs. Keeping up-to-date on new treatments and understanding what to expect from treatments the person is taking are also important.

There are some simple things you can do to help someone with AIDS feel comfortable at home.

  • Respect their independence and privacy.
  • Give them control as much as possible. Ask to enter their room, ask permission to sit with them, etc., saying "Can I help you with that?" lets them keep control.
  • Ask them what you can do to make them comfortable. Many people feel shy about asking for help, especially help with things like using the toilet, bathing, shaving, eating, and dressing.
  • Keep the home clean and looking bright and cheerful.
  • Let the person with AIDS stay in a room that is near a bathroom.
  • Leave tissues, towels, a trash basket, extra blankets, and other things the person might need close by so these things can be reached from the bed or chair.

If the person you care caring for has to spend most of their time in bed, be sure to help them change position often. If possible, a person with AIDS should get out of bed as often as they can. A nurse can show you how to help someone move from a bed to a chair without hurting yourself or them. This helps prevent stiff joints, bedsores, and some kinds of pneumonia. They may also need your help to turn over or to adjust the pillows or blankets. A medical "trapeze" over the bed can help the person shift position by themselves if they are strong enough. If they are so weak they can't turn over, have a nurse show you how to use a sheet to help roll the person in bed from side to side. Usually a person in bed needs to change position at least every 4 hours.

Bedsores

Bedsores or other broken skin can be serious problems for someone with AIDS. In addition to changing position in bed often, to help keep skin healthy, put extra-soft material (sheepskin, "egg crate" foam, or water mattresses) under the person, keep the sheets dry and free from wrinkles, and massage the back and other parts of the body (like hips, elbows, and ankles) that press down on the bed. Report any red or broken areas on the skin to the doctor or nurse right away.

Exercises

Even in bed, a person can do simple arm, hard, leg, and foot exercises. These are usually called "range of motion" exercises. These exercises help prevent stiff, sore points and help keep the blood moving. A doctor, nurse, or physical therapist can show you how to help.

Breathing

If someone is having trouble breathing, sitting them up may help. Raise the head of a hospital-type bed or use extra pillows or some other soft back support. If they have severe trouble breathing, they need to see a doctor.

Comfort

A good back rub can help a person relax as well as help their circulation. A nurse, physical therapist, or book on massage can give you some tips on how to give a good back rub. Put books, remote controls, water, tissues, and a bell to call for help within easy reach. If the person can't get up, put a urinal or bedpan within easy reach.

 

Providing Emotional Support

You are caring for a person, not just a body; their feelings are important too. Since every person is different, there are no rules about what to do or say, but here are some ideas that may help.

  • Keep them involved in their care. Don't do everything for them or make all their decisions. Nobody likes feeling helpless.
  • Have them help out around the house if they can. Everybody likes to feel useful. They want to be part of the group, contributing what they can.
  • Include them in the household. Make them part of normal talk about books, TV shows, music, what is going on in the world, and so on. Many people will want to feel involved in the things that are happening around them. But you don't always have to talk, just being there is sometimes enough. Just watching TV together or sitting and reading in the same room is often comforting.
  • Talk about things. Sometime they may need to talk about AIDS or talk through their own situation as a way to think out loud. Having AIDS can make a person angry, frustrated, depressed, scared, and lonely, just like any other serious illness. Listening, trying to understand, showing you care, and helping them work through their emotions is a big part of home care. A support group of other people with AIDS can also be a good place for them to talk things out. Contact the National Association of People with AIDS for information about support groups in your area. If they want professional counseling, help them get it.
  • Invite their friends over to visit. A little socializing can be good for everyone.
  • Touch them. Hug them, kiss them, pat them, hold their hands to show that you care. Some people may not want physical closeness, but if they do, touch is a powerful way of saying you care.
  • Get out together. If they are able, go to social events, shopping, riding around, walking around the block, or just into the park, yard, or porch to sit in the sun and breath fresh air
  


 

Guarding Against Infections

People living with AIDS can get very sick from common germs and infections. Hugging, holding hands, giving massages, and many other types of touching are safe for you, and needed by the person with AIDS. But you have to be careful not to spread germs that can hurt the person you are caring for.

Wash your hands

Washing your hands is the single best way to kill germs. Do it often! Wash your hands after you go to the bathroom and before you fix food. Wash your hands again before and after feeding them, bathing them, helping them go to the bathroom, or giving other care. Wash your hands if you sneeze or cough; touch your nose, mouth, or genitals; handle garbage or animal litter; or clean the house. If you touch anybody's blood, semen, urine, vaginal fluid, or feces, wash your hands immediately. If you are caring for more than one person, wash your hands after helping one person and before helping the next person. Wash your hands with warm, soapy water for at least 15 seconds. Clean under your finger nails and between your fingers. If your hands get dry or sore, put on hand cream or lotion, but keep washing your hands frequently.

Cover your sores

If you have any cuts or sores, especially on your hands, you must take extra care not to infect the person with AIDS or yourself. If you have cold sores, fever blisters, or any other skin infection, don't touch the person or their things. You could pass your infection to them. If you have to give care, cover your sores with bandages, and wash your hands before touching the person. If the rash or sores are on your hands, wear disposable gloves. Do not use gloves more than one time; throw them away and get a new pair. If you have boils, impetigo, or shingles, if at all possible, stay away from the person with AIDS until you are well.

Keep sick people away

If you or anybody else is sick, stay away from the person with AIDS until you're well. A person with AIDS often can't fight off colds, flu, or other common illnesses. If you are sick and nobody else can do what needs to be done for the person with AIDS, wear a well-fitting, surgical-type mask that covers your mouth and nose and wash your hands before coming near the person with AIDS.

Watch out for chickenpox

Chickenpox can kill a person with AIDS. If the person you are caring for has already had the chickenpox, they probably won't get it again. But, just to be on the safe side:

  • Never let anybody with chickenpox in the same room as a person with AIDS, at least not until all the chickenpox sores have completely crusted over.
  • Don't let anybody who recently has been near somebody with chickenpox in the same room as a person who has AIDS. After 3 weeks, the person who was exposed to the chickenpox can visit, if they aren't sick. Most adults have had chickenpox, but you have be very careful about children visiting or living in the house if they have not yet had chickenpox. If you are the person who was near somebody with chickenpox and you have to help the person with AIDS, wear a well-fitting, surgical-type mask, wash your hands before doing what you have to do for the person with AIDS, and stay in the room as short a time as you can. Tell the person with AIDS why you are staying away from them.
  • Don't let anybody with shingles (herpes zoster) near a person with AIDS until all the shingles have healed over. The germ that causes shingles can also cause chickenpox. If you have shingles and have to help the person with AIDS, cover all the sores completely and wash your hands carefully before helping the person with AIDS.
  • Call the doctor as soon as possible if the person with AIDS does get near somebody with chickenpox or shingles. There is a medicine that can make the chickenpox less dangerous, but it must be given very soon after the person has been around someone with the germ.

Get your shots

Everybody living with or helping take care of a person with AIDS should make sure they took all their "childhood" shots (immunizations). This is not only to keep you from getting sick, but also to keep you from getting sick and accidentally spreading the illness to the person with AIDS. Just to be sure, ask your doctor if you need any shots or boosters for measles, mumps, or rubella since these shots may not have been available when you were a child. Discuss any vaccinations with your doctor and the doctor of the person with AIDS before you get the shot. If the person with AIDS is near a person with measles, call the doctor that day. There is a medicine that can make the measles less dangerous, but it has to be given very soon after the person is around the germ.

Children or adults who live with someone with AIDS and who need to get vaccinated against polio should get an injection with "inactivated virus" vaccine. The regular oral polio vaccine has weakened polio virus that can spread from the person who got the vaccine to the person with AIDS and give them polio.

Everyone living with a person with AIDS should get a flu shot every year to reduce the chances of spreading the flu to the person with AIDS. Everyone living with a person with AIDS should be checked for tuberculosis (TB) every year.

Be careful with pets and gardening

Pets can give love and companionship. Having a pet around can make a person with AIDS feel better and enjoy life more. However, people with HIV or AIDS should not touch pet litter boxes, feces, bird droppings, or water in fish tanks. Many pet animals carry germs that don't make healthy people sick, but can make the person with AIDS very sick. A person with AIDS can have pets, but must wash their hands with soap and water after handling the pet. Someone who does not have HIV infection must clean the litter boxes, cages, fish tanks, pet beds, and other things. Wear rubber gloves when you clean up after pets and wash your hands before and after cleaning. Empty litter boxes every day, don't just sift. Just like the people living with AIDS, pets need yearly checkups and current vaccinations. If the pet gets sick, take it to the veterinarian right away. Someone with AIDS should not touch a sick animal.

Gardening can also be a problem. Germs live in garden or potting soil. A person with AIDS can garden, but they must wear work gloves while handling dirt and must wash their hands before and after handling dirt. You should do the same.

Personal items

A person with HIV infection should not share razors, toothbrushes, tweezers, nail or cuticle scissors, pierced earrings or other "pierced" jewelry, or any other item that might have their blood on it.

Laundry

Clothes and bed sheets used by someone with AIDS can be washed the same way as other laundry. If you use a washing machine, either hot or cold water can be used, with regular laundry detergent. If clothes or sheets have blood, vomit, semen, vaginal fluids, urine, or feces on them, use disposable gloves and handle the clothes or sheets as little as possible. Put them in plastic bags until you can wash them. You can but you don't need to add bleach to kill HIV; a normal wash cycle will kill the virus. Clothes may also be dry cleaned or hand-washed. If stains from blood, semen, or vaginal fluids are on the clothes, soaking them in cold water before washing will help remove the stains. Fabrics and furniture can be cleaned with soap and water or cleansers you can buy in a store; just follow the directions on the box. Wear gloves while cleaning. See the section on gloves for more information on types of gloves.

Cleaning house

Cleaning kills germs that may be dangerous to the person with AIDS. You may want to clean and dust the house every week. Clean tubs, showers, and sinks often; use household cleaners, then rinse with fresh water. You may want to mop floors at least once a week. Clean the toilet often; use bleach mixed with water or a commercial toilet bowl cleaner. You may clean urinals and bedpans with bleach after each use. Replace plastic urinals and bedpans every month or so. About 1/4 cup of bleach mixed with 1 gallon of water makes a good disinfectant for floors, showers, tubs, sinks, mops, sponges, etc. (Or 1 tablespoon for bleach in 1 quart of water for small jobs). Make a new batch each time because it stops working after about 24 hours. Be sure to keep the bleach and the bleach and water mix, like other dangerous chemicals, away from children.

Food

Someone with AIDS can eat almost anything they want; in fact, the more the better. A well-balanced diet with plenty of nutrients, fiber, and liquids is healthy for everybody. Fixing food for a person with AIDS takes a little care, although you should follow these same rules for fixing food for anybody.

  • Don't use raw (unpasteurized) milk.
  • Don't use raw eggs. Be careful: raw eggs may be in homemade mayonnaise, hollandaise sauce, ice cream, fruit drinks (smoothies), or other homemade foods.
  • All beef, pork, chicken, fish, and other meats should be cooked well done, with no pink in the middle.
  • Don't use raw fish or shellfish (like oysters).
  • Wash your hands before handling food and wash them again between handling different foods.
  • Wash all utensils (knives, spatulas, mixing spoons, etc.) before reusing them with other foods. If you taste food while cooking, use a clean spoon every time you taste; do not stir with the spoon you taste with.
  • Don't let blood from uncooked beef, pork, or chicken or water from shrimp, fish, or other seafood touch other food.
  • Use a cutting board to cut things on and wash it with soap and hot water between each food you cut.
  • Wash fresh fruits and vegetables thoroughly. Cook or peel organic fruits and vegetables because they may have germs on the skins. Don't use organic lettuce or other organic vegetables that cannot be peeled or cooked.

A person living with AIDS does not need separate dishes, knives, forks, or spoons. Their dishes don't need special cleaning either. Just wash all the dishes together with soap or detergent in hot water.

A person with AIDS can fix food for other people. Just like everybody else who fixes food, people with AIDS should wash their hands first and not lick their fingers or the utensils while they are cooking. However, no one who has diarrhea should fix food.

To keep food from spoiling, serve hot foods hot and cold foods cold. Cover leftover food and store it in the refrigerator as soon as possible.

Protect Yourself

A person who has AIDS may sometimes have infections that can make you sick. You can protect yourself, however. Talk to the doctor or nurse to find out what germs can infect you and other people in the house. This is very important if you have HIV infection yourself.

For example, diarrhea can be caused by several different germs. Wear disposable gloves if you have to clean up after or help a person with diarrhea and wash your hands carefully after you take the gloves off. Do not use disposable gloves more than one time.

Another cause of diarrhea is the cryptosporidiosis parasite. It is spread from the feces of one person or animal to another person or animal, often by contaminated water, raw food, or food that isn't cooked well enough. Again, wash your hands after using the bathroom and before fixing food. You can check with your local health department to see if cryptosporidiosis is in the water. If you hear that the water in your community may have cryptosporidiosis parasites, boil your drinking water for at least 1 minute to kill the parasite, then let the water cool before drinking. You may want to buy bottled (distilled) water for cooking and drinking if the cryptosporidiosis parasite or other organisms that might make a person with HIV infection sick could be in the tap water.

If the person with AIDS has a cough that lasts longer than a week, the doctor should check them for TB. If they do have TB, then you and everybody else living in the house should be checked for TB infection, even if you aren't coughing. If you are infected with TB germs, you can take medicine that will prevent you from developing TB.

If the person with AIDS gets yellow jaundice (a sign of acute hepatitis) or has chronic hepatitis B infection, you and everybody else living in the house and any people the person with AIDS has had sex with should talk to their doctor to see if anyone needs to take medicine to prevent hepatitis. All children should get hepatitis B vaccine whether or not they are around a person with AIDS.

If the person with AIDS has fever blisters or cold sores (herpes simplex) around the mouth or nose, don't kiss or touch the sores. If you have to touch the sores to help the person, wear gloves and wash your hands carefully as soon as you take the gloves off. This is especially important if you have eczema (allergic skin) since the herpes simplex virus can cause severe skin disease in people with eczema. Throw the used gloves away; never use disposable gloves more than once.

Many persons with or without AIDS are infected with a virus called cytomegalovirus (CMV), which can be spread in urine or saliva. Wash your hands after touching urine or saliva from a person with AIDS. This is especially important for someone who may be pregnant because a pregnant woman infected with CMV can also infect her unborn child. CMV causes birth defects such as deafness.

Remember, to protect yourself and the person with AIDS from these diseases and others, be sure to wash your hands with soap and water before and after giving care, when handling food, after taking gloves of, and after going to the bathroom.

Gloves

Because the virus that causes AIDS is in the blood of infected persons, blood or other body fluids (such as bloody feces) that have blood in them could infect you. You can protect yourself by following some some simple steps. Wear gloves if you have to touch semen, vaginal fluid, cuts or sores on the person with AIDS, or blood or body fluids that may have blood in them. Wear gloves to give care to the mouth, rectum, or genitals of the person with AIDS. Wear gloves to change diapers or sanitary pads or to empty bedpans or urinals. If you have any cuts, sores, rashes, or breaks in your skin, cover them with a bandage. If the cuts or sores are on your hands, use bandages and gloves. Wear gloves to clean up urine, feces, or vomit to avoid all the germs, HIV and other kinds, that might be there.

There are two types of gloves you can use. Use disposable, hospital-type latex or vinyl gloves to take care of the person with AIDS if there is any blood you might touch. Use these gloves one time, then throw them away. Do not use latex gloves more than one time even if they are marked "reusable." You can buy hospital-type gloves by the box at most drug stores, along with urinals, bedpans, and many other medical supplies. Many insurance companies and Medicaid will pay for these gloves if the doctor writes a prescription for them. For cleaning blood or bloody fluids from floors, bed, etc., you can use household rubber gloves, which are sold at any drug or grocery store. These gloves can be cleaned and reused. Clean them with hot, soapy water and with a mixture of bleach and water (about 1/4 cup bleach to 1 gallon of water). Be sure not to use gloves that are peeling, cracked, or have holes in them. Don't use the rubber gloves to take care of a person with AIDS; they are too thick and bulky.

To take gloves off, peel them down by turning them inside out. This will keep the wet side on the inside, away from your skin and other people. When you take the gloves off, wash your hands with soap and water right away. If there is a lot of blood, you can wear an apron or smock to keep your clothes from getting bloody. (If the person with AIDS is bleeding a lot or very often, call the doctor or nurse.) Clean up spilled blood as soon as you can. Put on gloves, wipe up the blood with paper towels or rags, put the used paper towels or rags in plastic bags to get rid of later, then wash the area where the blood was with a mix of bleach and water.

Since HIV can be in semen, vaginal fluid, or breast milk just as it can be in blood, you should be as careful with these fluids as you are with blood.

If you get blood, semen, vaginal fluid, breast milk, or other body fluid that might have blood in it in your eyes, nose, or mouth, immediately pour as much water as possible over where you got splashed, then call the doctor, explain what happened, and ask what else you should do.

Needles and Syringes

A person with AIDS may need needles and syringes to take medicine for diseases caused by AIDS or for diabetes, hemophilia, or other illnesses. If you have to handle these needles and syringes, you must be careful not to stick yourself. That is one way you could get infected with HIV.

Use a needle and syringe only one time. Do not put caps back on needles. Do not take needles off syringes. Do not break or bend needles. If a needle falls off a syringe, use something like tweezers or pliers to pick it up; do not use your fingers. Touch needles and syringes only by the barrel of the syringe. Hold the sharp end away from yourself.

Put the used needle and syringe in a puncture-proof container. The doctor, nurse, or an AIDS service organization can give you a special container. If you don't have one, use a puncture-proof container with a plastic top, such as a coffee can. Keep a container in any room where needles and syringes are used. Put it well out of the reach of children or visitors, but in a place you can easily and quickly put the needle and syringe after they are used. When the container gets nearly full, seal it and get a new container. Ask the doctor or nurse how to get rid of the container with the used needles and syringes.

If you get stuck with a needle used on the person with AIDS, don't panic. The chances are very good (better than 99%) that you will not be infected. However, you need to act quickly to get medical care. Put the needle in the used needle container, then wash where you stuck yourself as soon as you can, using warm, soapy water. Right after washing, call the doctor or the emergency room of a hospital, no matter what time it is, explain what happened, and ask what else you should do. Your doctor may want you to take medicine, such as AZT. If you are going to take AZT, you should begin taking it as soon as possible, certainly within a few hours of the needlestick.

  


 

Wastes

Flush all liquid waste (urine, vomit, etc.) that has blood in it down the toilet. Be careful not to splash anything when you are pouring liquids into the toilet. Toilet paper and tissues with blood, semen, vaginal fluid, or breast milk may also be flushed down the toilet.

Paper towels, sanitary pads and tampons, wound dressings and bandages, diapers, and other items with blood, semen, or vaginal fluid on them cannot be flushed should be put in plastic bags. Put the items in the bag, then close and seal the bag. Ask the doctor, nurse, or local health department about how to get rid of things with blood, urine, vomit, semen, vaginal fluid, or breast milk on them. If you can't have plastic bags handy, wrap the materials in enough newspaper to stop any leaks. Wear gloves when handling anything with blood, semen, vaginal fluids, or breast milk on it.

Sex

If you used to or still do have sex with a person with HIV infection, and you didn't use latex condoms the right way every time you had sex, you could have HIV infection, too. You can talk to your doctor or a counselor about taking an HIV antibody test. Call CDC-INFO 24 Hours/Day at 1-800-CDC-INFO (232-4636), 1-888-232-6348 (TTY), in English, en Español for information about HIV antibody testing and referrals to places in your area that you can get confidential or anonymous HIV testing. The idea of being tested for HIV may be scary. But, if you are infected, the sooner you find out and start getting medical care, the better off you will be. Talk to your sex partner about what will need to change. It is very important that you protect yourself and your partner from transmitting HIV infection and other sexually transmitted diseases. Talk about types of sex that don't risk HIV infection. If you decide to have sexual intercourse (vaginal, anal, or oral), use condoms. Latex condoms can protect you from HIV infection if they are used the right way every time you have sex. Ask your doctor, counselor, or call CDC-INFO 24 Hours/Day at 1-800-CDC-INFO (232-4636), 1-888-232-6348 (TTY), in English, en Español. for more information about safer sex.

Other Help You Can Give

Dealing with hospitals or insurance companies, filling out forms, and looking up records can be difficult even if you are well. Many people with AIDS need help with these tasks.

  • Getting a ride to the doctor's office, clinic, drug store, or other places can be a problem. Don't wait to be asked, offer to help.
  • Keeping a diary of medical events and other information for the person you are taking care of can help them and any other people who are helping. Be sure the person you are caring for knows what you are writing and helps keep the diary if they can.
  • Keeping a record of medicine and other care for the doctor or the other people providing care can help a lot. Make sure you know what drugs the person is taking, how often they should take them, and what side effects to watch out for. The doctor, nurse, or pharmacist can tell you what to do. People who are sick sometimes forget to take medicine or take too much or too little. Divided pill boxes or a chart showing what medicines to take, when to take them, and how much of each to take can help.
  • If the person you are caring for has to go into the hospital, you can still help. Take a special picture or other favorite things to the hospital. Tell the hospital staff of any special needs or habits the person has or if you see any problems. Most of all, visit often.

Children with AIDS

Infants and children with HIV infection or AIDS need the same things as other children -- lots of love and affection. Small children need to be held, played with, kissed, hugged, fed, and rocked to sleep. As they grow, they need to play, have friends, and go to school, just like other kids. Kids with HIV are still kids, and need to be treated like any other kids in the family.

Kids with AIDS need much of the same care that grown-ups with AIDS need, but there are a few extra things to look out for.

  • Watch for any changes in health or the way the child acts. If you notice anything unusual for that child, let the doctor know. For a child with AIDS, little problems can become big problems very quickly. Watch for breathing problems, fever, unusual sleepiness, diarrhea, or changes in how much they eat. Talk to the child's doctor about what else to look for and when to report it.
  • Talk to the doctor before the child gets any immunizations (including oral polio vaccine) or booster shots. Some vaccines could make the child sick. No child with HIV or anyone in the household should ever take oral polio vaccine.
  • Stuffed and furry toys can hold dirt and might hide germs that can make the child sick. Plastic and washable toys are better. If the child has any stuffed toys, wash them in a washing machine often and keep them as clean as possible.
  • Keep the child away from litter boxes and sandboxes that a pet or other animal might have been in.
  • Ask the child's doctor what to do about pets that might be in the house.
  • Try to keep the child from getting infectious diseases, especially chickenpox. If the child with HIV infection gets near somebody with chickenpox, tell the child's doctor right away. Chickenpox can kill a child with AIDS.
  • Bandage any cuts or scrapes quickly and completely after washing with soap and warm water. Use gloves if the child is bleeding.

Taking care of a child who is sick is very hard for people who love that child. You will need help and emotional support. You are not alone. There are people who can help you get through this. See the section on "Places to Call for Help."

Changing Symptoms

People with AIDS seem to get very sick, then get better, then get very sick, then better, and so on. Sometimes they get sicker and sicker. You can't always tell if they are going to live through a particular illness or not. These times are very rough on everyone involved. If you know what to expect, you can deal with these rough times better.

Dementia

Dementia (having trouble thinking) can be a problem for a person with AIDS. AIDS can affect the brain and cause poor memory; short attention span; trouble moving, speaking, or thinking; less alertness; loss of interest in things; and wide mood swings. These problems can upset the person with AIDS as well as the people around them. Mental problems can make it hard to follow the planned routines for care and make it difficult to protect the person with AIDS from infections. Be prepared to recognize these problems, understand what is happening, and talk to the doctor, nurse, social worker, or mental health worker about what to do.

If the person you are caring for does develop mental problems, you can help:

  • Keep important things in the same place all the time, a place that is easy to reach and easy to see.
  • If you need to, remind the person you are caring for where they are and who you are.
  • Put a clock and a calendar where the person you are caring for can see them. Mark off the days on the calendar. Write in what will happen each day.
  • Put up pictures of people who might be in the house with their names on the pictures where the person with AIDS can see them.
  • Speak in short, simple sentences.
  • Don't be afraid to be firm. Remove things like dangerous objects from reach.
  • Keep the sound from TVs, radios, and other noises down so the person doesn't get confused by unexpected sounds.
  • Talk to a health care worker who deals with people with dementia about how to handle problems.

As AIDS Progresses

Here are some of the things to expect as AIDS enters its final stages and ways to try to cope. Like other people nearing death, a person with AIDS who is near death:

  • Sleeps more and more and is hard to wake up. Try to talk to them and do things during those times when they do seem alert.
  • Becomes confused about where they are, the time or date, or who people are. Tell them where they are, what time and day it is, and who people are. Don't scold them for forgetting, just tell them.
  • Begins to wet their pants or lose bowel control. Clean them, using gloves, and use powder or lotion to prevent rashes. A catheter for passing urine may become necessary.
  • Has skin that feels cool to the touch and may turn darker on the side of their body touching the bed as the circulation slows down. Keep them covered with warm blankets, but don't use electric blankets because they can burn a person with poor circulation.
  • May have trouble seeing or hearing. Even so, never talk to other people as if the person with AIDS can't hear you. Always talk to the person with AIDS or anyone else in the room as if the person with AIDS hears you.
  • May seem restless, pulling at the sheets on the bed or acting as if they see things that you don't. Stay calm, speak slowly, and reassure the person. Comfort them with gentle reminders about who you are and where they are.
  • May stop eating and drinking. Wipe their mouth often with a wet cloth. Keep their lips wet with lip moisturizer.
  • May almost stop urinating. If there is a catheter, it may need to be rinsed or flushed to keep it from getting blocked. A nurse can show you how to do this.
  • Has noisy breathing because they can't cough up the fluids that collect in the back of their throat. Talk to their doctor; the doctor may suggest raising the head of the bed or putting extra pillows under their head. Turning them on their side may also help. If they can swallow, feed them some ice chips. If they have trouble swallowing, a cool, wet washcloth on the lips can keep their mouth and lips moist and may satisfy their thirst. If they begin to have irregular breathing or seem to stop breathing for a minute, call the doctor.

Hospice Care

Many people have found hospice care (programs for people who are dying and their caregivers) for adults and children a big help. Others feel that hospice care isn't right for them. Hospice services can help caregivers, family, and other loved ones, as well as help the dying person deal with the concerns and fears that may come near the end of their life. You should be able to find hospice organizations listed in your local phone book.

 

Final Arrangements

A person with AIDS, like every other adult, should have a will. This can be a difficult subject to discuss, but a will may need to be written before there is any question of the mental competence of the person with AIDS. You may want to be sure the person you are caring for has a will and that you know where it is.

Living wills, which specify what medical care the person with AIDS wants or does not want, also have to be written before their mental competence could be questioned. You, as the caregiver, may be the person asked to see that the doctors follow the wishes of the person with AIDS. This can be a very hard experience to deal with, but is another way of showing respect for a dying person. You may want to be sure the person you are caring for knows that they can control their medical care through living wills.

Often, people who know that they will die soon choose to make their own funeral or memorial arrangements. This helps make sure that the funeral will be done the way they want it done. It also makes things easier for those left behind. They no longer have to guess what their friend or loved one would have wanted. You may be asked to help the person with AIDS plan the funeral, make arrangements with the funeral home, and select a cemetery plot or mausoleum. You may be able to help the person with AIDS decide how they wish to be buried or if they want to be cremated.

After the death, there will still be things to do. Programs that have been providing help, such as Supplemental Security Income, will have to be officially informed of the death. Some money already sent or received may have to be returned. The will may name you, a relative, or another person as the one to handle these tasks.

Dying at Home

Whether or not to die at home is a big decision, but it may not have to be made right away. As the health of the person with AIDS changes, you and they may change your minds several times. However, it is something you should talk about with the person with AIDS ahead of time. Plans should be made; legal papers may need to be signed. What the dying person wants and needs, the needs and abilities of the caregivers and other loved ones, the advice of the doctors and other medical professionals, the advice of clergy or other spiritual leaders, may all need to be considered in deciding what is best. Consideration must be given to everyone living in the home. Small children and others may not be ready to cope with death in their home. Others in the home may prefer to face the final moments of the person with AIDS in familiar surroundings. Just be sure the person with AIDS knows that they will not die alone, that the people they love will try to be with them, wherever they choose to die. You also should get help to deal with your own grief after the death.

Help for You

Taking care of someone who is very sick is hard. It wears you down physically and emotionally and creates stress. You can get very angry watching a person you love get sicker and sicker no matter how hard you work or how much you care. You have to do something with this anger. Many people can talk out their anger with other people who have the same problems or with counselors, ministers, rabbis, friends, family, or health workers. Many AIDS service organizations can help you find people to talk to.

You should not try to be the only person taking care of someone with AIDS. You need some time for yourself. The sicker the person you are taking care of becomes, the more important this is. If you try to do everything yourself, you will wear yourself out and not be able to go on. You are not alone. Other people have done this before. Learn from them. Call the places listed in the next section for help.

Places to Call for Help

CDC-INFO for answers to questions about HIV infection or AIDS, materials on sex and AIDS, or referrals to local organizations in your community. One of the referrals you should ask for is the telephone number of your local Red Cross chapter. Call CDC-INFO 24 Hours/Day at 1-800-CDC-INFO (232-4636), 1-888-232-6348 (TTY), in English, en Español.

The CDC National AIDS Clearinghouse  can provide copies of this brochure and other materials about HIV and AIDS. The Clearinghouse can also check computer records for organizations in your area dealing with AIDS or materials about HIV or AIDS from health departments, the American Red Cross, or other community-based organizations. The telephone number is 1-800-458-5231. The international number is 00-301-217-0023. The fax number is 1-301-738-6616.

The Department of Health and Human Services’ AIDS info Link Leaves the DHAP Internet Site can answer questions about treatments for AIDS and diseases linked to AIDS. The telephone number in the United States and Canada is 1-800-448-0440. The international number is 1-301-519-0459. To send a fax, dial 1-301-519-6616. If you have a hearing problem and have a TTY machine, call 1-888-480-3739.

AIDS info Link Leaves the DHAP Internet Site can also provide information about current trials of new drugs for AIDS or diseases linked to AIDS. The telephone number is 1-800-448-0440.

The National Association of People With AIDS (NAPWA) is an association of people who have HIV infection or AIDS. To contact them, call 1-202-898-0414.

Your local phone book should have listings for the local American Red Cross chapter, nursing homes, hospice organizations, the state and local health departments, local HIV or AIDS service organizations, and local medical organizations or referral agencies.

Your local American Red Cross chapter may have special programs on HIV infection and AIDS for African-Americans, Hispanics, and managers and workers on the job. Some Red Cross chapters may offer other training or help with transportation. Both the CDC National AIDS Clearinghouse and the American Red Cross can provide brochures and other materials about HIV and AIDS intended for women, young people, parents, teachers, and those at high risk for or infected with HIV.

 Glossary

AIDS -- acquired immunodeficiency syndrome (AIDS), a disease caused by a virus that weakens the immune system. This allows other diseases to attack the body.

Anal sex -- sexual intercourse in which the penis is put into the anus (rectum) of the sex partner.

AZT -- a medicine to slow the growth of HIV.

Bedsores -- sores on the skin caused by lying in bed too long.

Booster -- an extra dose of a vaccine to bring immunity back to full strength and stop illnesses.

Catheter (urinary) -- a tube put in the bladder to drain urine.

Chickenpox -- a very contagious viral disease, very common in children, that causes sores (called pox) on the skin.

CMV -- a virus, cytomegalovirus, that causes a flu-like illness and, in severe cases, swollen glands, pneumonia, eye infections (retinitis), and birth defects.

Condom -- a thin protective sheath that fits over the penis during vaginal, anal, or oral sex to prevent sexually transmitted disease or pregnancy. There are also female condoms that fit inside the vagina.

Dementia -- severe mental problems caused by disease affecting the brain, "losing one's mind."

Diarrhea -- excessive or loose, watery bowel movements, "the runs."

Eczema -- a skin condition with itching, sores, redness, and scaling of the skin.

Epidemic -- an outbreak of disease.

Feces -- waste from the bowels, excrement, bowel movements, "crap."

Genitals -- the sex organs: penis and testicles, vagina and uterus.

Hemophilia -- a hereditary disorder in which the blood does not clot normally, so that cuts or sores bleed for longer than normal.

Hepatitis B -- an infectious viral disease that inflames the liver.

HIV -- human immunodeficiency virus, the virus that causes AIDS.

Hospice -- services provided for dying people.

Immune system -- the parts of the body that fight germs.

Immunizations -- shots or other medical treatments that protect a person from getting a particular infectious illness.

Impetigo -- a bacterial, infectious disease in which the skin erupts with sores filled with pus.

Infection -- germs (bacteria, viruses, or parasites) present in the body. Infection may or may not result in illness.

Infectious disease -- a disease caused by a germ (bacteria, viruses, fungi, parasites).

Jaundice -- a condition sometimes caused by an infection (hepatitis) that causes the eyes, skin, and urine to turn unusually yellow; can result from damage to the liver.

Latex -- a type of rubber used to make condoms, medical gloves, and other very thin, flexible materials.

Measles -- a very contagious viral disease, usually in children, causes red spots on the skin and high fevers. Also called rubeola. All children should receive measles vaccine.

Mumps -- a very contagious viral disease, common in children, causes swelling of the salivary glands. All children should receive mumps vaccine.

Nasal fluid -- mucus that comes out of the nose, "snot."

Oral sex -- sexual intercourse in which the mouth of one person touches the genitals or anus of another person.

Parasite -- a plant or animal that lives on or in another plant or animal, usually hurting its "host."

Pneumonia -- an infection of the lungs often producing cough, fever, and difficulty breathing.

Polio -- a viral disease (poliomyelitis) that causes inflammation of the spinal cord, often causing paralysis.

Rubella -- a viral disease that causes birth defects in babies of women who are infected early in pregnancy. Also called German measles. All children should receive rubella vaccine.

Saliva -- spit, the fluid in the mouth.

Semen -- greyish-yellowish fluid that contains sperm and comes out of the penis at orgasm, "cum."

Shingles -- a viral infection (herpes zoster) that causes painful sores on the skin.

Side effects -- things, usually bad, that medicines do to some people in addition to what the medicines are intended to do; for exemple, a drug could make you dizzy, make your joints ache, or make you feel like throwing up.

TB -- a disease (tuberculosis) that usually affects the lungs; formerly called consumption.

Toxoplasmosis -- an infection that can damage the eyes and central nervous system, as well as some internal organs.

Transfusion -- a transfer of blood or blood products into the body from one or more other people.

Urinal -- a container or jar for urine, especially for use by people who cannot get out of bed.

Urine -- the liquid waste product of the body excreted by the kidneys, "piss," "pee."

Vaccine -- an injection (shot) of dead or weakened germs intended to cause the immune system to make antibodies to a particular germ.

Vaginal sex -- sexual intercourse in which the penis is put into the vagina.

Vaginal fluids -- the secretions (wetness) produced inside the vagina. During sexual arousal these secretions usually increase to lubricate the vagina for sexual intercourse.

Vomit -- matter from the stomach ejected through the mouth, "throw up," "spit-up."