AIDS Caregiver : Other Help You Can Give

by CDC

(Page 5 of 6)

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.

About the Author

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