Background: Don had been HIV positive for eight years and had been diagnosed with AIDS in May 2003. He was prescribed a “cocktail” of drugs and was thriving while on them. In May 2004, he stopped taking his medication, which caused his health to decline again.

The following chronology was written by Tony Lewis and recounts significant events during February, March, and April 2005. If you have details to add to this narrative, send a message to Tony.

Friday, February 4		Don had moved out of my house in June 2004. If you were unaware that Don and I were not still living together, you may want to read the rest of the story. Since leaving my house, he had been living in our old Honda Odyssey, which I signed over to him. He spent most nights parked in his mom’s driveway in San Jose. I knew that his health was not the greatest and I was concerned about the effect sleeping out in the cold was having on him. I took out a second mortgage on my house and bought a mobile home for him to live in. He got the keys today. For some reason, he wanted to spend another night sleeping in the van at his mom’s place.
Saturday, February 5		We moved all of Don’s stuff from my house to his mobile home. It had been stored in my garage and a spare bedroom since June. Don spent his first night in the mobile home. Our friends, the D’Anjou family from church, helped move Don’s belongings from my house to his new home. Bill D’Anjou had also helped me get a bed for Don, which Don loved. Given how much time he was going to spend in that bed, it’s really a good thing that it was so comfortable. Over the next few weeks Don came to my house often to help me out. He usually was only able to stay a couple of hours because he got tired easily. Around the end of February he stopped coming at all. I went by his home to check on him about once a day. At first he gave me a hard time about it; I think he thought I was just doing it to check up on him, but the more time he spent sick in bed, the more he seemed to appreciate that I stopped by to see how he was doing and to find out if he needed anything. He often sent me off to the Rite Aid (across the street from the mobile home park), the grocery store, or to a restaurant to pick up things that he needed.
Wednesday, March 9		I stopped in to check on Don about 9:00 PM while I was on my way home from a meeting at church. He had been having trouble breathing for a few days. Tonight he had a fever and was feeling really bad. I took him to the emergency room at Eden Medical Center. We waited for a couple of hours before they moved him from the waiting room to a bed. The doctors performed a chest x-ray and diagnosed him as probably having pneumonia; they also treated a couple of wounds on his bottom that had been bothering him for several weeks. He said he did not want to stay at the hospital so the doctor gave him three prescriptions and sent him home. One of those prescriptions was for an antibiotic named Septra.
Friday, March 11		Don got DIRECTV installed today. Given that he was spending most of his time in bed, he was watching a lot of television. There were not many choices available over the antenna and the reception was poor. In particular the closed captions were not coming through very well. He was thrilled to have great reception and to have more choices available. He also got a TiVo from DIRECTV. One of the first things he had me do was program it to record Queer Eye for the Straight Guy.
Friday, March 18		I had ordered a new sofa and love seat in January. They finally arrived yesterday. The D’Anjou family came to the rescue again and helped me move my old sofa and love seat over to Don’s house. Now Don was able to sleep in his bed at night and rest comfortably on the sofa during the day. Over the next several days, Don continued taking the medications he was given after his visit to the emergency room, but he was not able to eat much. Every time he tried to eat, he would immediately throw up. He was also having a hard time swallowing. I was checking in on him at least once a day and was really concerned by the fact that he was not getting enough to eat. I don’t think he was getting enough to drink either.
Friday, March 25		Don called me via the relay service and said that he had passed out four times during the day. Later he would tell me that he got out of bed to go to the bathroom and that he passed out in his way back to bed; he got a gash on his arm when he fell. At one point during the day, he didn’t have the strength to walk to the kitchen so he crawled from his bedroom to the kitchen to get some Hawaiian Punch to drink. When I got the call, I went to his home. I found that in addition to the black outs, Don had a rash over most of his body. We gathered things he wanted to have with him for a stay in the hospital and headed back to the emergency room at Eden Medical Center. He was seen within a couple of minutes by the triage nurse who immediately called for a bed because his blood pressure was dangerously low. He asked me to call our pastor, Arlene Nehring, and let her know that he was in the emergency room. She came over as soon as she got the word. They put him on a saline IV immediately to get fluids into his body. When the results of the blood tests came back, the doctor told me that Don only had one third of the amount of blood in his body that he should have had. There were many possible reasons for a low blood count including tuberculosis. They moved Don into an isolation room in the ER, ordered three units of blood, and requested a room for him to be admitted to the hospital. Once he was on respiratory isolation, everyone had to wear masks. He hated that, because almost everyone who came to see him did not sign and he could not even try to read their lips when they were masked. Most of his communications with the hospital staff were via written notes. Don got settled into his bed at around 2 AM. Once he was comfortable, Arlene and I went to our respective homes. I think Don received about ten units of blood and several units of platelets during his stay. The low platelet count was particularly troubling because it limited the procedures the doctors could perform. Anything that had a risk of bleeding could not be performed because of the low platelet count. In the end, I think this was the single most important factor in how his treatment progressed. The doctors did extensive testing over the next several days trying to figure out why Don had the low blood count and the rash. They eventually determined that he had experienced an allergic reaction to the antibiotic Septra. In addition, Septra can be toxic to a person’s bone marrow if the person is not getting enough to eat and drink. Once the doctors understood what was happening to Don, their attention turned to getting his body to heal itself. They took him off of respiratory isolation since there was no longer any reason to think his low blood count was due to tuberculosis. He was ecstatic when people no longer had to wear masks.
Tuesday, March 29		Our pastor, Arlene Nehring, and I sat down with Donald to complete his Advance Health Care Directives. Arlene reviewed the document from the California Medical Association with him, but I wasn’t sure he completely understood the distinction between “all treatments other than those needed to keep me comfortable” and prolonging one’s life “as long as possible within the limits of generally accepted health care standards.” I had heard about a document called Five Wishes. I looked at it online and thought the lists of various end-of-life procedures they described would be helpful to him. Don and I went through all of them and he indicated which he wanted or didn’t want if he was “close to death.” After the list was reviewed, it was clear to Don and to me that he did not want extraordinary measures once it was clear that he would die. He spent a lot of time watching the Terri Schiavo saga unfold and he made it clear that he did not want to find himself or his family in that situation. While working on his advance directives, Don said that he wanted to be cremated, but that he didn’t know what he wanted done with his ashes. He named me as his agent to make health care decisions “if my primary physician finds that I cannot make my own health care decisions.”
Wednesday, March 30		Don refused all treatment today. Several times he wrote notes to the doctors and nurses saying “I’m dying.” Most notably, he refused a bone marrow test that was needed to help determine why his body was not making enough blood. I went to see him in the late afternoon. When I got there he was not communicating with anyone. Once in a while he would look at me and say “I’m dry” or “I’m in pain,” but he never responded to any follow-up questions. Most of the time he just sat there staring straight ahead. A psychiatrist came in to see Don and described him as being “catatonic.” I spent the night at the hospital (initially sleeping on the floor, but then a nurse brought me a cardiac chair that reclined).
Thursday, March 31		When Don woke up, I explained to him that Arlene and I did not think he was dying and that we encouraged him to complete the advance directives so that everyone would know what he wanted some day in the future when he was unable to communicate his wishes personally. I asked him if he wanted to get well enough to go home and see his hearing dog, Dustin. He said that he did. I told him that if he wanted to go home, he needed to cooperate with the doctors and nurses and let them perform their tests. This afternoon he was watching the coverage of Terri Schiavo’s death while his mother and sister, Linda, were visiting. He asked for some paper. He drew a map of the San Francisco Bay and said that he wanted his ashes scattered there. I received a telephone call saying that Don was being transferred to ICU. I gathered up some things for an extended visit with him and headed over to the hospital. While he didn’t seem to be getting any worse, the doctors were concerned about being unable to keep his blood count up and they wanted his vital signs to be monitored. I asked the nurse to bring in a cardiac chair and spent the night with him. I was with him at least 22 hours a day from the time he went to ICU until he died. All the time he had been in the hospital, I had been going to his home twice a day to feed, water, and take care of Dustin, which I continued to do even after his death.
Friday, April 1		After taking care of Dustin, I went home for a while. I printed out some work to take back to the hospital and let my co-workers know that I would be unreachable during the day. (As I write this a week later, that work is still in the folder I used to carry it to the hospital.) Don finally had his bone marrow test today. The doctor who extracted the bone marrow sent some samples out to be analyzed and took other samples to the lab and looked at them under the microscope. She said that she saw immature red blood cells and immature platelets in the bone marrow. I took this to mean that his bone marrow had recovered from the toxic shock and was finally producing the blood that his body needed. His primary doctor put him on peripheral nutrition (that is, via an IV in his arm) because he was not getting enough food by mouth.
Saturday, April 2		A friend from church, Pam, who is a social worker came to visit Don. They had worked together several times over the preceding months trying to find services for Don. They talked about what services he was hoping to receive after his discharge and he authorized the hospital’s social worker to talk to Pam. He was still looking forward to getting out of the hospital and getting on with his life. Don had a pretty good day; at least until the doctor ordered a CT scan and the nurse brought him the not-so-flavorful fluid that he needed to drink. When the nurse brought the drink, I was out taking care of Dustin and checking on things at my house. His mother and sister, Linda, were there, but neither they nor the nurse were able to get him to drink it. When I got back to the hospital, he had twenty minutes to drink it before he would miss the window for his CT scan. I went into his room and told him that he needed to drink it if he wanted the doctors to know what was wrong and to be able to make him better. Reluctantly, he drank it. I went with him for the CT scan so that I could interpret for him. (The hospital had brought in an interpreter a couple of times before he went into ICU, but they never bothered to do so when I was with him.) The CT scan went fine, but when it was over, he asked for assistance sitting up. The nurse and I helped him up and I stood beside him. I have seen Don faint many times (most often when he has his blood drawn while sitting up). I looked at the nurse and said, “He’s about to pass out.” Seconds later he collapsed into my arm and I laid him back down on the table. As usually happens, once he was lying down, he woke back up. The CT scan did not reveal any problems that the doctors were not already aware of. Don was cranky the rest of the afternoon and evening. He repeatedly told everyone to just leave him alone. When I went to sleep, I was still hopeful that the doctors would keep his body going until the bone marrow was able to produce enough blood.
Sunday, April 3		I woke up around 6 AM. When I walked over to Don’s beside, I knew that something had changed overnight. While I cannot put what I saw into words, it was clear to me at that moment that he was not going to make it. Except for when someone shook his shoulder to get his attention, he slept most of the day. For the past couple of years, Don has converted the worship bulletin for our church into a PowerPoint presentation that is displayed on a large screen television. Since he was unable to do it, I left about 8 AM to take care of Dustin and to prepare the PowerPoint for him. I woke him to tell him where I was going and to say that I would return later. I told the nurse to call me at home when she got word that his doctor would be making her rounds. I got a call a little before 10 AM and headed back to the hospital. (I had been scheduled to take care of the little kids in the nursery during worship, but I called the church and told them they needed to find someone else.) The doctor told me that they were running out of things to do. They continued to give him saline to keep up his blood pressure, but the water just leaked out of his veins. He was getting very bloated. While I had been out, the nurse had inserted a catheter to help with his urination. He found that uncomfortable and asked to have it removed. I convinced him to leave it in and the nurse gave him some painkiller to make it easier for him to tolerate the catheter. I talked to Don and told him that the doctors were not sure they could make him better. I asked him whether he wanted to keep getting the blood transfusions, the IVs, and all the blood tests or if he would prefer to be kept comfortable. He said that he wanted the doctors to keep up the procedures. This was to be the last conversation that we had. Don’s niece, Deanna, came to see him around 1 PM. When she came up to his bed, I shook his shoulder. He opened his eyes and looked at us. Deanna said, “Hello,” which I interpreted. He looked at her and signed “Hello.” That was the last thing he said to anyone. His mother and sister, Linda, came to see him shortly after Deanna left. They stayed with him until about 5:30 PM. He did open his eyes a couple of times and look around the room in response to me shaking his shoulder, but he never showed any obvious signs of recognition. Throughout the course of the day, his skin got progressively more yellow because his liver had failed. His urine output was reduced to a very slow trickle. A kidney specialist came in to examine him; she said that his kidneys were failing (probably in response to the liver failure). Around 6 PM, his doctor came to see me. She said that given the multiple organ failures and their inability to keep his blood pressure up, that she was recommending that we discontinue the treatment and keep him comfortable. While I had been consulted by the doctors throughout his stay and actively participated in the direction his treatment took, this was the first decision that I had to formally make as his health care agent. I told her that I agreed with her recommendation; the nurse disconnected all of the IV bags. I asked the doctor how long he was likely to live; she said that it could be hours or days. The nurse wanted to turn off the monitor that showed his vital signs, but I pleaded with her to leave it on. She told me that Don was likely to be moved out of ICU into a private room now that he was only receiving comfort care and that there would not be a monitor there. I told her that I still wanted it on. She left it on, but shut off all the alarms. I called his sister’s house and left a message for her to call me at the hospital. (I later learned that she and her mom had gone out to dinner on their way home.) I also left a message that Arlene should come by the hospital as soon as possible. (Arlene and her partner, Stephanie, had been out of town for the previous several days.) Arlene came straight from the airport to the hospital. At about 7:50 PM, I was sitting by Don’s bedside reading; Arlene had not arrived yet. Suddenly the vital sign monitor beeped. I looked up to see that all of the readings were flat lines. I got up to go to the nurse’s station, but I met the nurse at the door. (I then learned that it is impossible for anyone to turn off “critical” alarms so the nurse knew at the same instant that I did.) I looked at him and said, “We’ve lost him.” No sooner had the words left my mouth than Don took a huge gasp of breath and all the readings came back on the monitor. He still was not ready to let go. Arlene arrived a couple of minutes later. We sat on either side of his bed holding his hands. Over the next several minutes his respiration and heart rate continued to slow down. Eventually the monitor stopped registering any respiration and I could not see his chest moving at all, however, his heart continued to beat for a while longer, but it continued to get slower and slower. Near the end, the monitor was registering about one heart beat each time it cycled through. At 8:10 PM, the line stayed flat and he was gone. A doctor came in a little later to make the official declaration of death. By the time his family made it back to the hospital, the nurse had been able to remove all the IVs and other equipment that had been connected to his body. The nurse cleaned him up and put on a clean gown. Once Don’s body was prepared, I returned to the room while Arlene went to wait for his family to arrive. The lights in the room were very bright, so I shut off the ceiling lights and turned on the bedside light. I sat with him holding his hand and waited for his family to arrive. Within a few minutes, members of his family were around his bedside and together we grieved this tragic loss.

Postscript: Dustin has been adopted by the Rose family from our church. They say that he does not like to be left alone and that he whimpers and howls until someone comes back into the room. I am sure that he is confused by his new surroundings and the fact that Don is missing.