By Bill Wilson
Bill Wilson © 2011
Now that Aids has been around for half of my life time, it is difficult to think about death as I experienced on such a personal and massive scale. Yes, there were relatives and close friends who died but there was a time that death seemed relentless. Who would be next? Is that a birth mark or a KS lesion? Will it be me next?
My first client Tom pursuing his study of bamboos before I knew him.
Copyright New York Botanical Garden
Sometimes for all the theory and conjecture of what if this or that occurs, the reality is just what is practical. Before I finished my training to become a home health care aide, I was asked to take care of my first client, Tom. He suffered from Kaposi Sarcoma lesions in his throat. He had had radiation treatments that basically burnt his throat so that it was painful for him to swallow. When the pain became unbearable I was to give him a dose of morphine. His friend showed me how to mix it. I don’t remember the exact measurements, but the morphine was measured with an eyedropper. When I mentioned that I didn’t think it was legal for me to dispense morphine, it was explained to me that technically I was correct, but that if I didn’t do it then they would have to put Tom back into the hospital and he didn’t want that. Eventually Tom ended up getting care in the Hospice, which is where he should have gone from the hospital, but those things take time to arrange so I was glad to be of help.
Kennedith Brown (lower photo left) and Bill Wilson (upper photo second from right).
Copyright Washington Post
Another person I helped was actually a buddy assigned to my partner, Fernando. Ken suffered from anemia even before he had AIDS. The insurance had stopped paying for transportation to have his blood transfusions. (It doesn’t make sense but that story is too long to add here.) So I became his transportation to and from the hospital for his transfusions and the day before to have his blood tested. On the day that he died he was scheduled to have a transfusion. There was a nurse’s aide staying with him. The front seat of my car could be lowered so that it almost lay flat as a bed. We got him into the car even though he was very weak. I was convinced that he was going to stop breathing before we got to the hospital. The first aggravation was that when we got to the place they do the transfusions they told us since we had not come in the day before and had his blood typed that we would have to go to a different place and come back. We did. When we got back they told us that we would have to wait until the blood was delivered and see if there was enough room to actually do the transfusion. At that point I exploded. I told them that I knew that they had a bed for Ken because we had an appointment from 9 -12. I wasn’t going to tell Ken that he had to wait because they were punishing him for not coming in yesterday. I could see two empty beds and I expected that when I came back Ken would be in one of them. At that point I left because I realized I was looking for something on the nurse’s desk to throw I was that mad. I walked to the end of the hall, took a long drink of water, took several deep breathes and walked back to the room. They had put Ken in a bed and the nurse’s aide was sitting in the waiting room. She told me that the staff had asked her who I was. She said she told them that I was a friend who was having a hard time dealing with the fact that Ken was dying. “I’m not having a hard time dealing with his dying,” I said. “I’m having a hard time dealing with the fact they are treating him as if he is already dead!
So while we were waiting I asked the nurse’s aide what we were going to do if Ken died while he was still in the car. She said, “Well we would just continue to drive back to his apartment. When we got there we would put him in the wheelchair. If we saw anyone we would tell them that he was sleeping. Then we would put him in his bed. Then we would call whoever you are supposed to call and tell them he died in bed.” Fortunately we never had to try out the scenario because Ken was still breathing when we got back to his apartment and put him to bed. His mother came that evening to stay with him. She said that around 8:30 pm he told her he loved her and was going to sleep. When she woke up the next morning he wasn’t breathing.
Chuck Bailey and Jack Mitchell from Jack’s memorial service program.
It is difficult to know if you are going to get support from medical professionals because there are some professionals willing to bend the rules and others not. It wasn’t difficult to find the willing doctors because they were the ones with large number of AIDS patients. But the most willing doctor was only as good as the nurse who follows their instruction. There was one time when a nurse refused to listen and actually expressed her disapproval of why we were there. It happened at the Washington Home and Hospice. I had known Chuck when he was with his first partner, Jack, who died of AIDS. Jack’s death was long drawn out and painful for all involved. After Jack died Chuck met Terry and they became partners. Then Chuck became ill and gradually lost the use of his left side. When home care became impossible he was admitted to the hospice. I spent a few hours a day just being there because the promise had been made to Chuck that he would never be alone. One day Terry comes in and asks Chuck if he needs anything for pain and Chuck said that he wanted some morphine. So Terry asked the nurse to get Chuck some morphine. The nurse came back and said that it hadn’t been four hours since Chuck had gotten his last dose so they would have to wait another hour. Terry said that Chuck’s doctor had prescribed morphine as needed. The nurse said no that she couldn’t give it to him. Terry said it wasn’t her decision to make that he was telling her to give Chuck more morphine. The nurse said she wasn’t going to do it. Terry told her to get someone who would. She said, “You just want to give him morphine so that he will die sooner.” At which point Terry yelled at her to leave the room and never come back.
The next morning when I arrived at the hospice the executive director asked me to come to her office so I could explain to her what happened. I remember telling her there where two separate things I needed to say, “One, there is no one who wants Chuck to die. So for the nurse to express that even if it was what she believed was out of line. Since that was her expressed feeling I didn’t see how they could allow her to continue to work in a hospice because there were plenty of other hospitals were that attitude would be acceptable, but a hospice was about making people comfortable in the last whatever time they had left of their lives. Second, Chuck knows what Terry is going through because Chuck went through the same thing with his first lover. Terry and Chuck have an understanding and if you can’t provide the care Chuck needs, then don’t for a moment think Terry is bluffing when he says that he will take Chuck out of here and find another place, or take him home.”
Fortunately it never came to that because Terry was able to get what he wanted for Chuck when he wanted it.
See Related On Scene with Bill Wilson Archive
Bill Wilson is a San Francisco-based veteran photojournalist. Bill embraced photojournalism at the age of eight. In recent years, his photos capture historic record of the San Francisco LGBT community in the Bay Area Reporter (BAR), The New York Times, The San Francisco Chronicle, The San Francisco Examiner, SFist, SFAppeal. Bill has contributed to the Sentinel for the past seven years. Email Bill Wilson at firstname.lastname@example.org.