CARING FOR A LOVED ONE WITH AIDS

Coping with AIDS

When HIV progresses to AIDS, the disease might get much worse, and then better, and then worse again. Sometimes, during these times of illness, it is difficult to tell whether recovery is possible. It is good for a caregiver to know what to expect. There are changing symptoms that go along with AIDS, including dementia.

AIDS can affect the brain and cause poor memory, short attention span, and trouble moving, speaking, and thinking. It can lessen alertness, cause a loss of interest in things and bring on dramatic changes in mood. The following guidelines can help you cope if there have been psychological changes in your loved one who has AIDS:

Keep important things in the same place, where they are easy to reach and can be seen all of the time
Remind the person with AIDS where they are and who they are
Put a clock and calendar where the person with AIDS can see them. In addition, mark off the days on the calendar and write in what happened each day.
Put pictures of people who may be in the house, with their names on the pictures, where the person with AIDS can see them.
Speak slowly, in short, simple sentences.
Remove dangerous objects from reach.
Keep televisions, stereos, and other noises turned down low to avoid confusion by unexpected loud sounds.
Talk to a healthcare professional about dementia problems and how to handle them.

When AIDS enters its final stages, caregivers and their loved ones are having new and increasingly difficult experiences.

Below, find a list of some of the issues that you may expect and some suggestions for coping with them.

Remember that if any of these symptoms occur, you should contact your loved one’s healthcare professional as soon as possible to let them know what is happening. Your loved one’s healthcare professional can determine if the situation requires immediate medical attention.

A person with AIDS:

May sleep more and may be hard to wake up. You should talk to your loved one and do things while he or she is alert.
May become more and more confused about where they are, the time or date, and who people are. You should state who you are and what time and date it is. Remind yourself to be patient and to repeat yourself if necessary.
May begin to lose bladder or bowel control. As a caregiver of someone with AIDS, you should wear gloves when cleaning your loved one and use powder or lotion to help prevent rashes. At some point, your loved one may need to be catheterized. If this occurs, you will need instruction from a healthcare professional on catheter use.
May have skin that feels cool to the touch and that turns darker on the side of the body touching the bed. Keep your loved one covered with blankets to help them stay warm. Do not use electric blankets because they can cause burns in a person with poor circulation.
May have trouble seeing or hearing. Even so, you can talk with your loved one as if he or she can hear you.
May seem restless by pulling at the sheets or acting as if they can see things that are not there. As a caregiver, you should remain calm if this happens. Speak slowly to your loved one, and let them know who they are, where they are, and who you are.
May stop eating or drinking altogether. As a caregiver you can wipe your loved one’s mouth with a damp towel and help keep his or her lips moist with moisturizer. If your loved can swallow, let them suck on ice chips as they may also help.
May stop urinating. If this occurs, you should rinse and flush the catheter since that may be the problem. If you are not comfortable doing this, contact a healthcare professional or an AIDS service organization for health.
May experience noisy breathing problems and may not be able to cough up fluids. You can try propping your loved one up on more pillows or raising the head of the bed if possible. Turning your loved one on one side may help. You should contact your healthcare professional immediately if your loved one’s breathing becomes irregular or stops for a minute.

Managing Financial Issues

As a caregiver of someone with AIDS you may need to contact a lawyer or AIDS support organization in order to handle medical care or life support decisions. In addition, you may need to be legally named the care coordinator of your loved one. To file insurance claims, apply for government aid, pay bills, or handle other business for your loved one, you may also need a power of attorney, living will, and healthcare proxy.

Spiritual Support

Spiritual questions raise fundamental questions about life such as, “Why are we here?”, “What is a good life?”, “What happens after death?”

These profound questions may become especially important when dealing with a potentially terminal illness. Caregivers can help their loved ones by thinking through these questions and answers, or listening to their loved ones as they think about spiritual concerns.

Your loved one may want to make sense of his or her life experiences, and reminisce, or just talk about the past and look for meaning in what has happened in his or her life. Sometimes listening is the best thing you can do. You can also share experiences and feelings but often, listening is what your loved one may need most.

Spiritual questions are not answered easily, and for many, definite answers are not possible. For those whose faith gives answers and solace, your support of that faith may be helpful and appreciative. For those who are troubled by uncertainty, you may help by sharing your own questions and uncertainties which will help show your loved one that these questions are normal and reasonable.

Educational, Advocacy and Service Resources

AIDS Alliance for Children, Youth, and Families

AIDS Action

Elton John AIDS Foundation

Gay Mens Health Crisis

National Minority AIDS Council

National Association of People With AIDS

Project Inform

The Body

POZ magazine

AIDS Education Global Information System

Aids.org

Medscape HIV/AIDS

AIDS Treatment Data Network

AIDSMeds.com

National AIDS Treatment Advocacy Project

National Institute of Health AIDS Information

HIVInfo.US

Books

Always on Call: When Illness Turns Families Into Caregivers, Edited by Carol Levine. Chapter 4: Learning to be a Caregiver, Trying to be a Brother, by Timothy J. Sweeney [ed. Note: sad, wonderful and helpful AIDS story]