Caring for someone with
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
How to Get Ready to Take Care of Someone at
Every situation is different, but here are some tips to get you
- 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
- 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,
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
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
Earlier in the AIDS
epidemic some people became infected through blood
transfusions, blood products (such as clotting factors given to
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
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
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
saliva, sweat, tears,
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.
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
- 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 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.
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.
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.
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
- 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
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,
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
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
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
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)
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
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
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.
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 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.
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
- 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
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.
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
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.
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
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.
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.
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
- 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
- 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
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
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
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."
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 (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
- 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.
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.
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
The Department of Health and Human Services’
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.
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.
National Association of People With AIDS (NAPWA) is an
association of people who have HIV infection or AIDS. To contact them, call
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.
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
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,
Genitals -- the sex organs: penis and testicles, vagina and
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
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
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
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
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