Breaking the Surface (35 page)

It turned out to be very complicated to get my father out of the home, not because they wouldn’t let him go, but because there were all kinds of family disagreements over what to do with him. There were battles over everything, from whether or not he was going to be cremated to the specifics of his will. All I cared about was getting him out of the home and to a place where he could comfortably spend the last days of his life.

The convalescent home was not at all comfortable. The first room they had him in was for three people. One man was on a respirator. The other had emphysema and was hacking up a storm. It was awful. I went down there and got him moved—one of those times that my celebrity status came in handy. I don’t like using my celebrity, but this was for my father and it worked. I brought along pictures and autographed them for the nurses and spent time talking to the staff. I got my father moved to a double room. He wasn’t there very long before the guy next to him went into cardiac arrest. As they were trying to resuscitate him, my father pulled back the curtain and said to the nurse, “If there’s anything I can do, let me know.” He’d become a very different person from the man I knew as a child.

The double room was better, but it was still a nightmare. So when Dad suggested going to Dana Point, I was all for it. My sister consulted with a couple of doctors and one suggested that it was fine to move him even though he was very ill, but the second doctor said that my father would not survive the trip up to Dana Point. My sister went to my dad’s sisters in tears, telling them that he wanted to go to Dana Point but that it was going to kill him. They came rushing down to San Diego along with my cousins. None of them wanted to go along with what my dad wanted and suggested moving him to a private room.

I was very frustrated and told all of them, “Look, if he’s making his last request to go to Dana Point, you have to honor that. He’s told us that he’s thought about it and he’s fully aware of the possible consequences. If he wants to take that risk, then we have to let him.” If he died in the process of getting there, at least we would know that we tried to honor his last wish.

I was so upset at this point that I told them that I was going home and they could do what they wanted. The family tension was too much for me to handle. I said good-bye to my dad, but I didn’t tell him about the battle that had been raging just outside his door. I didn’t think it was fair to get him mixed up in it given how sick he was.

The next day, my dad called me up at home and he was crying. He wanted to know what was going on and pleaded, “Why aren’t we at Dana Point?” I had no choice but to tell him that the family didn’t want him going to Dana Point, that they were afraid he’d die getting there. I also told him that I had decided to remove myself from the whole thing because I was afraid of a lawsuit from my relatives if anything went wrong, although no one ever made any such threat. He said, “How do we get to Dana Point?” I told him that getting there wasn’t the problem, that the first thing he had to do was call his sisters and tell them what he wanted.

A few hours later, I was getting frantic phone calls from his sisters and my cousins. They were yelling at me, “This is your idea, what are you trying to pull?” I explained that Dad had called me, that I wasn’t going to lie to him and tell him that the doctor said he couldn’t go. The doctor I talked to said he could go to Dana Point if he wanted to.

What finally convinced them was my father. He insisted that he wanted to go. I got on the phone and found out how to rent a hospital bed, how to get all the things we needed to take care of Dad at the house. The next day, Steven and I went to the house in Dana Point, cleaned it up, and started getting everything set up for him.

By Friday we’d made all of the arrangements to have him moved. Dad had already taken care of getting a twenty-fourhour-a-day nurse. He hired a wonderful woman from the Philippines named Esther. She spoke with a beautiful British accent, and sometimes it was hard to understand everything she said. But she was very sweet, and she and my dad had fun teasing each other. He smiled a lot when she was around.

On Friday, Esther and I took Dad by ambulance up to Dana Point. When we got to the house and got Dad settled in, we had a big celebration. My Aunt Rose, who was really a family friend, and my dad’s sisters, Aunt Mary and Aunt Virginia, were there along with my Uncle Press. My cousins Peter and Paul were there. Aunt Rose danced around my father’s bed. We were all very happy that he’d gotten there safely, and he seemed so happy to be there.

Esther had plenty to do once everybody left. Dad could feed himself, but that was about it. And it didn’t always stay down, so there was a lot of cleaning up to do. He couldn’t get from the bed to a chair, so I would lift him out of bed. It was so odd, because I remembered him being so strong and now here I was carrying him. I also gave him back rubs, which he needed for his circulation.

Esther was at the house full-time, so between the two of us, we managed to take care of my dad around the clock. At first, Esther slept in a chair next to Dad’s bed, but I didn’t think that was fair. She worked all day and needed to get some rest. We rearranged things, and after that, Esther stayed with Dad until two or three o’clock in the morning and then I would wake her up to go to bed. Then I slept in the chair next to Dad’s bed in case he woke up and needed something. All of that was the easy part. Watching his deterioration was hard.

Sometimes I think it was a shame that it took illness—my father’s and my own—for us to have a relationship and to make peace with each other. But at least we found some common ground and developed a relationship before he passed away. It was a very special time for us. He needed me and I was able to be there for him, and he was able to accept my help. The way I looked at it, I was just doing for him what I would have wanted him to do for me. If I had gotten sick first, he might not have been able to do the same for me, but that wasn’t important. It made me feel good to be there for him, the way I had once promised I would be there for Tom and the way I hope someone will be there for me.

It wasn’t until after I got my dad moved into the Dana Point house that I had a chance to think about how sad it was being in the house that Tom had died in. Now this was where my father was going to die. I wondered if I was going to be the next one to die in that house.

Shortly after we got Dad moved to Dana Point, I had to go to Florida. I had a prior commitment to be a part of a five-day study for U.S. Diving, a modeling study where they take you through the diving process and ask you what you’re thinking as you go through the dive. I was nervous about leaving my dad for so long, but my friend Margo, who was also a friend of Dad’s, volunteered to stay with him and Esther.

That Thursday, I got a call from Margo that Dad had taken a turn for the worse, that he was having hallucinations and not making sense. I called Despina to let her know what was going on and asked her if she could go over to see Dad because I couldn’t get there until the next day. It was about an hour’s drive from her home in El Cajon. Her response to me was that she might be able to drive up on Sunday. I told her not to bother and hung up. I quickly arranged for a flight home and left the next morning. By the time I got there they’d figured out it was a reaction to a sleeping pill, and within a couple of days he was pretty much himself again.

After that I was very reluctant to leave him, but he encouraged me to continue with my acting and voice classes. So a few days each week, I left Esther alone with Dad and went to Los Angeles. When I came back to the house, we would talk about what I was working on. He’d look forward to the conversations and seemed really interested in hearing about my day. That was during the Gulf War, and Dad kept the television on all the time. When I got home, he’d tell me all about the latest news. He also liked talking about the stock market.

My own health remained basically stable, although I’d developed resistance to the AZT, and my doctors put me on ddl, another antiviral drug. As a cautionary measure, Debbie Shon arranged for me and my doctors, Kathy and John, to meet with the director of the National Institute of Allergy and Infectious Diseases, Dr. Anthony Fauci, to discuss my case. She explained to me that he had coordinated AIDS research there since the beginning of the epidemic, in the early 1980s. Debbie said that when she first talked to Dr. Fauci about me, he told her, “He’s a national treasure and we should help him as much as we can.” I was very flattered. Dr. Fauci was careful to explain to Debbie that they could provide no special treatment for me, but he agreed to meet with me and my doctor to review my records.

A short while later, I flew to Washington to meet with Debbie, Kathy, John, and Dr. Fauci. At the time I didn’t realize how extraordinary that meeting was—that not many HIV patients got to meet personally with Dr. Fauci. The purpose of the meeting was to make sure we were on the right track. Kathy and John brought my records along. The meeting was very goodnatured. At first, we talked about the Olympics and we talked about Dr. Fauci’s interest in running. He’s a bit of a jock, and he told me about his sports regimen, which was very challenging.

Things got more serious when Dr. Fauci reviewed my records and he and Kathy and John discussed my case. Dr. Fauci agreed that ddl was the best alternative to AZT, and he encouraged me to keep taking my medication and to keep doing whatever I was doing, because I was in relatively good shape. He and my doctors talked a while longer about my treatment, and then the meeting was over.

When I got home, Kathy wanted me to come in to her office to have a gamma globulin infusion. But I didn’t want to take even more time away from my father to go to her office, so I convinced her to send me everything I needed so I could do it myself.

In the middle of the night, after both Esther and my father had fallen asleep, I locked myself in the bathroom and set up the whole thing. I hung the bottle containing the fluid from the shower rack, hooked up the plastic tube, and inserted the needle in my arm. I have great veins, but I discovered that it’s not easy putting a needle into your own arm. A few minutes later, there was a knock at the bathroom door. Dad had awakened and wanted to be moved—Esther needed my help. I was in a panic. I quickly clamped the tube, pulled the needle out of my arm, put everything in the cabinet under the sink, and went to help Esther. Afterward, I went back into the bathroom and started all over again.

Ironically, I had a nurse in the house who could have helped me with the infusion, but I couldn’t ask for her help because I couldn’t tell her why I needed the infusion in the first place. That whole experience made me feel very alone, especially since I couldn’t tell my father what had happened. I could have, but I didn’t want him to worry about me.

On my father’s good days, Esther and I got him into a wheelchair and we moved him onto the back porch. He’d sit out there with his Ray-Ban sunglasses on, looking like one of the Blues Brothers. One time I rolled him around the neighborhood in his wheelchair. I had Freeway with me, and he stayed right by the wheelchair with Dad. Every time we stopped, Freeway put his head on my father’s arm. Dogs can be so sweet, especially around sick people.

We talked about all kinds of things during those few weeks at the house—our lives, what we’d accomplished, his illness, my illness. He talked about how proud he was of me; he called me his “champ.” We really never talked about death much beyond the fact that my father didn’t want to live if he was going to be a vegetable or in a lot of pain. We’d already talked a lot in the months before about the quality of life versus the quantity. Dad made it clear that when it came time, he just wanted it to be over. He didn’t want any machines or anything like that.

We both talked about how we didn’t really fear death as much as we feared being sick. We talked about wanting to die with dignity and how if things got really bad we’d be there for each other. I told him, “If the time comes and I’m not able to care for myself and the quality of life is gone, then if I need assistance, I want you to help me die in peace.” Dad wasn’t as specific as I was, but he said that he wanted me to put him out of his misery when he got really sick. He said that when the time came, I should do whatever was necessary to allow him to die in peace. I promised I would do that and I know it gave him peace of mind.

My dad’s decline was pretty gradual, and toward the end he was on a morphine pump to keep the pain in check. Despite the morphine, he was still thinking clearly up until four or five days before he died. On the Friday before he died, he called Steven and me into his room and started going on about how he had floated up to the ceiling, then pushed off the wall and pushed off the ceiling and landed back in bed. I repeated back to him what he had just said, and he got very alarmed. He said, “Now I’ve lost it.” Then he started muttering about wanting to go to the hospital. I tried to find out from him if he was feeling sick, but he kept saying, “No, they’ll give me a shot. They’ll put me out of my misery. That’s what I want.” We calmed him down and assured him that everything was okay, and he drifted off to sleep. He never regained consciousness, and on Sunday, he died.