Article Content

A patient who stands out in my mind is Mark, a young man with advanced AIDS I cared for through most of 1991, before the protease inhibitor drugs came on the scene. Mark moved into his grandfather's townhouse with his mom, Dora (both names are pseudonyms). His parents were divorced. Mark was a drag queen by profession. His mom was a stereotypical stage mother who also loved her make-up, wigs, and outfits. Mark's father was a career military man who had difficulty dealing with a gay son who was also a drag queen with AIDS.


Mark was home on total parenteral nutrition and frequent blood draws. He also had a bedsore. He had a little nephew who loved him very much. It was hard for him to grasp the idea that his uncle was not going to get better and would, in fact, be dying at home. I showed Mark's nephew how to cut out paper snow flakes to decorate the windows in Mark's room. I got a case manager through the local AIDS service organization involved, who, among other things, arranged a family meeting for Mark, his parents, sister, grandfather, and nephew. At some point we got a priest involved through the AIDS Interfaith Network.


As Mark's death was approaching I would go to sleep at night wondering if I'd be getting a call from Dora. She had previously asked me to promise her I'd come to the home when he died, no matter what time it was. They did not want to switch to hospice home care because they were comfortable with me. Dora was so great in taking care of her son, but she had a hard time with pressure ulcer care and did not want to be the one to call the police to report the death. I had previously called the local police department to warn them that an expected death was to occur in the home and that no extraordinary measures were to be taken by emergency medical services.


One morning after 5:30 AM my home phone rang. I immediately knew it was Dora. She told me Mark had passed away. I got dressed and drove over. We hugged and cried together. Dora told me she went into Mark's room and found him dead before 5 AM. He had an apparently peaceful death at home, where he and his family wanted him to be. Mark had said he didn't want to die in a nursing home or hospice facility.


Dora and her father thanked me for helping them care for Mark at home. Then I called the police to report the death. The worst part for Dora was seeing Mark having to be stood up in the body bag as he was carried down the narrow stairwell by the representative from the funeral home.


I kept in touch with Mark's mom and grandfather, but they both died within 2 years of him. The 3 of them were such a tight unit in life it made sense for them to follow each other in death.


In those years I cared for a lot of people with AIDS in the home care setting, which was such an intense time for us in the trenches. It was draining at times, but extremely fulfilling and rewarding as well. I believe eventually I'll be reunited with Mark and Dora and all the patients and families I became so intimately involved with during that time in home care.