HIV POSITIVE  Caretakers
Coping With A Loss

Special Difficulties of HIV- Disease Deaths

Any death of a loved one is difficult to cope with. Most families who have lost someone to an HIV-related illness, however, face additional losses, some of which may not have been resolved along the way. These can include financial losses jobs, homes, savings), loss of friends or support, loss of time from school or work, loss of hopes and dreams. Much of this probably had to be put on hold. After a death you may be faced with tackling the consequences of these other losses, when you have little energy and few resources. Life often revolves around care of the sick person, and after the person is gone, even everyday life may seem to lose purpose and focus. Loss of roles and routines taken on to support the dying person -- nursing duties, scheduling clinic or hospital visits, etc., can be surprisingly unsettling.

Another difficulty is the effect of HIV infection on a person's thinking and emotions. Uncharacteristic or even mean and painful things may have been said, or the disease may have changed the sick person radically. Private feelings and thoughts about this may cause you pain. It will take time to recover and put the experience into perspective. The dying person may have withdrawn from other family members, and they may need help, too.

A couple's sexual life may have been halted or changed by a positive HIV antibody test, or by the diagnosis of AIDS. Their plans to have children may have had to be discarded. These losses can be newly painful and intense after a partner's death, and feelings about them can be hard to share and difficult for others to grasp.

The irrational stigma attached to HIV disease and AIDS, along with others' fears and misinformation about how a person can become infected or transmit HIV, only adds to the pain, isolation and worries of families. Some people choose secrecy with neighbors, friends, even relatives, rather than risk rejection or discrimination. This can leave survivors cut off from support. Other families choose to be open about HIV disease. Reactions can vary from understanding and overwhelming support to violent acts. These are difficult decisions and people may be isolated from others when they need them most.

When a person with hemophilia or a sexual partner dies of HIV-related illnesses there are sometimes unresolved feelings of unfairness and betrayal. The fact that the person had to struggle first with hemophilia, then was hit with another disease, may add to feelings of shock and unfairness. That the person was infected through the use of the best available medical treatment is a painful irony.

Finally, there is the added serious problem that a survivor -- a partner, a sibling, a parent, a child, or another relative or friend -- may also be infected with HIV, facing the possibility or actuality of treatment regimens and ill health. Partners maybe in limbo for several months before they are certain that they are free from infection, and those who cared for the ill person may have concerns about exposure to the virus.

Any of these difficulties can heighten anxiety many times over and compound the grief experience.

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