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 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.
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.