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Caring for Someone with AIDS at Home

Here's information for the caregiver about how to take care of a housebound AIDS patient. From: Centers for Disease Control and Prevention
By: Centers for Disease Control and Prevention

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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.

Centers for Disease Control and Prevention. Publication: Caring for Someone with AIDS at Home. 1996. (Online) http://www.hivatis.org/caring


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