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:
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:
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 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
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]