At one time, AIDS was a quick death sentence. Then there was a time when it was a rapidly progressive chronic disease with various difficult pathways through the end of life. Recently, the course of AIDS has changed again. With new drug regimens, many people are living for much longer, and how the usual person will die is again unclear. It still seems likely that persons with AIDS will probably die of AIDS, but often this will happen only after many years of living with the HIV infection. The very last phase is likely to include infections, tumors, or mental confusion. If you want, you can take a strong hand in shaping what treatments will and will not be used when AIDS becomes far advanced.
AIDS has become a "high-tech" disease. The medication regimes and machinery involved are difficult even for experienced health care professionals to manage. You will be well-served to seek out doctors and teams who have lots of experience with AIDS patients, since they will be right up to date on the best information as it becomes available. They also will be familiar with your needs and the challenges you face. Even if you are in a rural area or otherwise can't have an experienced team as your primary source of care, you might well find an experienced team in a nearby city to consult occasionally.
Because HIV infection is (incorrectly) thought of as being dangerous to people nearby, because people with advanced AIDS are often remarkably ill in appearance, and because many people with AIDS have few anchors in social and family life, you may have to rely on paid caregivers and non-family volunteers more than most people affected by chronic disease in old age. You would do well to connect with family, even if they have been distant. Often, "buddy" programs in the community can really help. Most people with AIDS will live a long time, but you will probably be very sick from time to time, and will have long periods when you have limited energy. You will do better if you have some connections to friends and family.
AIDS has affected mostly people who are relatively young. Thus, you are not as likely as retired persons to have substantial financial resources and permanent housing. Yet, you may still have young children and family caregivers who are younger, too, and must work. And treating AIDS is very expensive. Almost everyone with AIDS needs to consult knowledgeable and experienced social workers who can help to secure qualified support services for you and your family. Likewise, plans must be made for the care of any dependent children, some of whom may have been infected as well. Social workers are helpful, too.
The situation may seem quite overwhelming. Caregivers often doubt their ability to meet the physical and psychological needs of AIDS patients. Yet, astonishing networks commonly are created, and caregivers ordinarily feel useful and positive about their work.
Caregivers may worry about becoming infected. This is really exceedingly unlikely if everyone learns a system called universal precautions and uses it consistently, even when it seems a little silly or a little troublesome.
Bereavement seems harder for AIDS patients and their families. Many victims (and their caregivers) are younger and frequently must deal with the losses of friends and family members who have also died of AIDS. Caregivers who are HIV-positive are being asked to confront their own futures every time they care for a loved one with advanced AIDS. For them, anticipatory grieving may be much more intense.
Not many years ago, it was very awkward to deal with death certificates with "AIDS" as the cause of death, and it was often even difficult to get funeral services. Now, you and your family are much less likely to run into these problems, but you still would do well to inquire and plan ahead. Preplanning funerals and handling of the body, and arranging things having to do with the care of dependent children and financial estates, is especially important for many people with AIDS. Many of these things are much easier to do when the person dying can still sign legal papers and make decisions. It is often a great burden to family and friends to have to handle everything through the courts and official channels.
Remember, you often can't avoid feeling angry, and you will need to grieve. The situation is tragic. The intensity of your feelings is a reflection of the intensity of the situation. Just be sure to reach out for support, and to try to express your appreciation when support is offered.
Patients with AIDS frequently take many medications. These regimes can themselves cause symptoms. Because of the unpredictable nature of the disease, it is sometimes hard to know which medications provide comfort or suppress the illness and which ones are ineffective and cause problems. Active aggressive treatment often continues right up until death. When you can't keep track of why you are taking certain medicines, you may need to review them all with your doctor or nurse and see if some can be stopped or their timing can be simplified.
Depression or depressive symptoms are very common among people with AIDS. You should know the warning signs of these disorders and seek help if they occur. The desire to commit suicide can itself be a symptom of depression. So, any decisions about euthanasia or assisted suicide should be delayed until a physician can make an evaluation and treat underlying psychiatric disorders.
HIV/AIDS sometimes causes dementia or confusion. Again, it is important to use health care providers who are familiar with the management of AIDS and with these psychiatric disorders.
Physicians try to evaluate symptoms and treatments by keeping in mind "the big picture." You should do the same. Will the medication or test significantly enhance your quality of life or enable you to do something important? Is the treatment or test being used to prevent a symptom or to extend life? How does the medication make you feel? Remember, how you live is more important than the numbers on the laboratory reports. And how you die is less important than how you live right up to the end.
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|Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission.|