August 13 - August 19, 2000
|
Sunday, August 13 Julie the administrative nurse came to check on how Don was doing without the catheter. As we were standing over his bed, I commented on how difficult it was to get him to drink anything. "We don't want to give him an IV to hydrate him," I said. We'd agreed on that earlier. It's part of what you have to agree to as part of the hospice "team," but it was also in keeping with Don's wishes not to be hooked up to anything. "I've tried giving him water through the baby bottle, but he isn't swallowing so well. I don't want him to dry out, but I don't want to drown him, either." Julie started to answer my question but my attention was immediately drawn to Don. His head remains cocked to the side and his arms are curled up to his chest. It's a rigid position and you wouldn't think it could be expressive, but it was. All of a sudden, Don's arms started jerking and his torso shook. I could tell he was agitated. Of course! How stupid of me! Just because he couldn't speak didn't mean he couldn't hear. "I'm sorry, dear," I said. "I shouldn't have said that. You're not going to drown. I'm going to be very careful about how I give you water. Julie will tell me how." My words had an immediate calming effect. Julie was impressed, too. I think she may have forgotten that there was still a very live person before us, and that what we said must take him into consideration. Later, in the kitchen with the pocket door to the dining room closed, she gave us more complete instructions. She told me how to wet a napkin and put it to his lips. She also went over the signs of approaching death with Rémy and me. I told her about the North Central Florida Hospice web site where I had found some very useful information on end-of-life signs. "So, you think we are approaching that stage?" I asked. "Yes," she said. "He is actively dying." I took a moment to absorb that. Then I mentioned that he'd had only 8 of his 16 mg of Decadron yesterday. "I wouldn't worry about that," she said. "There's enough in his system that it would be several days before a drop in the level would be noticed." Huh. That's not what we'd been told three weeks ago. Seizures and headaches is what we'd been told to expect. Julie was going on, "I'll have some Decadron suppositories made up just in case. You can give them to him that way if it becomes necessary." I had a few errands to run that afternoon and they were taking me longer than I had expected. Growing anxious, I called home around 3:00 PM to check up on things, and Remy told me everything was quiet at home. I finished up and got home around 4:00 PM. Remy was sitting at the bedside, looking concerned. I could tell she didn't want to speak, though. She motioned me over to the bed and conveyed in gestures that there was something about Don's breathing. I came over to the bed. His breathing had changed. I listened closely and I thought I could hear a kind of loose gurgle. The hospice material had spoken of a sound that resembled marbles rattling around. That is what I heard, just like it had been described on the web page. Remy and I left the bedside and huddled in the kitchen. "I know I said everything was okay when you called, and it was," she said. "But a little while later, I was working in the office and I thought I ought to check on him. I just got this feeling, that something had changed. His breathing is different." "Yes," I said. "He seems to be breathing from his chest, not his diaphram." "Yes, it's higher, shallower." I'd given him 4 mg of Decadron at breakfast and another 4 at lunch before leaving on errands. That made 8 mg so far. He'd had only 8 mg yesterday, too. When 8:00 PM came around and he still hadn't woken up to take his next dose, I called the hospice nurse on duty for advice. "It seems to me the only way we could get a dose of Decadron in him now would be with a suppository," I said. Julie had had some made up and delivered earlier today for just this contingency. "But I really don't want to disturb him," I explained to the nurse. What I really meant was I didn't want to violate him, to rudely interrupt the process he was going through. "I agree," said the duty nurse. "You should cease all medication." "Okay." I hung up before it fully sank in. I told Remy, "She said to cease all medication." "Oh," she said. We both knew what that meant. He wasn't eating and he wasn't getting any juice or water because he wasn't swallowing well enough. So, this was it. Rémy and I sat over him until 1:30 AM that night. We said a Rosary, me substituting the Five Wonderful Gifts (faith, hope, love, compassion, and joy) for the Five Glorious Mysteries. We sang songs to him: "Beautiful Dreamer," "Summertime," "We Shall Overcome," and "Silent Night." Rémy was horribly off-key. I told her she was singing Don's part. We went to sleep around 2:00 AM, Rémy in the bedroom, me on the floor in the livingroom. Before bedding down, I stepped outside into the back yard and looked up at the nearly full moon. I raised my arms. "You can take him if you want," I said. |
|
|
Monday, August 14 Both Mimi and Jnani had said they were coming today, but when Mimi called, I discouraged her from coming. I thought today might be the day Don would have to be recatheterized, and I didn't want anyone around for that. However, when Julie came by again this morning to check, she said she didn't think he would need it today. I asked her to check Don's heart rate as well. She told me it was at 88. That's nearly twice what it normally is. Jnani called separately to say she wasn't coming either, but would be there tomorrow. She seemed to have something else to say, too. "I thought Madhuri was coming to see him," she said, "and now I hear she's not coming and it makes me sad." I didn't know what to say. I didn't know who Madhuri was and hadn't known she was planning on visiting. It wasn't until later that I found out Madhuri was Patricia (or Trisha). She and I had been exchanging e-mails on the advisability of a visit this weekend. I had told her that I thought it was unnecessary, especially as she would have to fly up from Los Angeles to do it. "Everything you need to do for Don you can do from where you are," I told her. She thanked me for that, later adding that she was in the middle of taking a course and really needed to concentrate on it. I think she needed permission to stay in Los Angeles without feeling guilty. But now Jnani was saying that she was "sad." "She and Vivekan were so close," she said. Was she trying to make me feel bad because one of Don's friends wasn't coming to visit him while he was in this extreme and delicate state? I was relieved, not saddened. Whatever Jnani's problem was, I couldn't focus on it. There was too much going on in my head already. The phone conversation dwindled to a close with her promising to be here tomorrow morning. Around 3:00 PM, Don's breathing changed again. The marbley sound had gone away yesterday, but now the rhythm suddenly changed. It became more like panting, not breathing. Each breath he took shook the bed. It looked like a lot of work. When I went to check on him, it seemed his heart rate was up, too. I also noticed that his lower abdomen was beginning to swell slightly, a sign of urine build-up in his bladder. It had been forty-eight hours since the catheter had been removed. I contemplated the prospect of a visit from Jnani at the same time the nurse would be here to recatheterize him. I was not looking forward to it. Both Rémy and I stayed up past midnight that night. Around 10:00 PM, I called the hospice again to tell them that Don's breathing was up to about once a second (Remy said she thought it was faster than that). I got the switchboard, of course, and they said they'd pass the information on to the night nurse, but I never heard back from them. That was okay, really. It would have been reassuring to hear from them, but unnecessary. Nothing to do. We played a couple of games of Pipes, a visual perception game I had gotten from Glyphic two Christmas's ago, and that I had brought to Don in Kentfield to help him with his visual field cut and spatial reasoning. He had played a couple of games and then lost interest. He was much better at Dominoes, and much more likely to beat me at them, too. We played in the kitchen, but my eyes kept wandering over to the doorway to the dining room. Don's breathing was filling the house, each breath taking so much energy, the sound of it touching the walls in every room. Remy went to bed around midnight. I stayed up and used my computer to type up some week-old journal entries. I finished around 1:00 AM and went over to Don's bed to check on him. His feet were cool. I thought at first I must be mistaken, that perhaps they had been sticking out from under the comforter and gotten cold. But they hadn't been. In fact, the comforter was warm from where it had been lying across the motor that inflates the air cushion he's lying on. His feet could only be cool if they weren't getting any circulation. His body is shutting down. It's moving all the blood to the internal organs. His hands and feet will grow cold, then his arms and legs. I checked his abdomen. It was now visibly swollen, but warm. When I touched it, his arms twitched defensively. I think that's when I noticed his arms were no longer curled up, clenched tightly to his chest. They were lying relaxed at his sides. I stood at the foot of his bed and brought my hands together. "Tonight would be a good night, sweetie," I said aloud. "If you're still here tomorrow, I'll have to have you catheterized. I don't want to, but I have to take care of your body as long as it's here. You put your faith in me to do that when you no longer could. And I put my faith in you to do what you think best." I dreaded what was coming. I sat beside him and held his hand and said another Rosary. This time, I personalized the Five Wonderful Gifts, telling him how he had given me each one of them in our short time together. It took me a while as I kept crying. I wondered if I should stay here by the bedside, holding his hand until the moment came. But could I stand to do that? Could I actually stand to see him die? But when I had finished the Rosary, I was no longer afraid. I knew what was coming and I knew what had to be done. I took all the medicines and apparatus of illness off the tables by his bed and put them away. He wasn't going to need them again. I cleaned the tables and the area around his bed, then I cleaned off the dining table in the living room. I brought out all the candles I could find and lit them, several around his bed, some more on the dining table, and several in the meditation room. I lit every candle I could find in the house. I turned off all the lights. Finally, I got out the book of illustrated mandelas and yantras and opened it to the full-color illustration of the Sri Yantra Mandella and put it on the dining room table. It was lying right in the path I had seen him walk in my dream, between him and the sunrise. I figured if he saw that, he would know it was safe. He would know that this is part of the pattern, too, and this was the way he should go. The candles made the room warm. I lay down on the mattress on the floor and relaxed. I felt I had prepared our house for a Great Guest. I felt He would feel honored and welcome. I was dreaming before I even knew I was asleep. In fact, I became aware of the fact that I was dreaming in the dream itself, and it so startled me that I awoke. I shouldn't leave so many candles burning unattended, I thought. I got up and blew out a few candles in the meditation room that would otherwise need watching. I went back to check on Don again. He was still panting hard, as if he were racing his bike to the top of Mount Tam. His feet were now palpably cold and his calves were beginning to feel cool. I checked the clock: it was 3:00 AM. Then I went and laid down again. I had just enough time to wonder that I could fall asleep at a time like this before I was asleep. I remember thinking, It's not an event, really. If it happens, it doesn't need me there to help it. I felt quite at peace. A sound woke me. It was a floorboard creaking. My sister was awake in the bedroom and stirring. The house was otherwise silent. Silent. I stood up and looked over at the bed. Maybe he had just switched to a quieter respiration. Maybe he was having a moment of apnea. No. He was not breathing. His breathing had not paused, it had stopped. I stood at the foot of the bed and put my hands together as yogis do when they greet each other with namaste I heard my sister enter the room behind me. "Remy," I said, "I think our Guest has arrived." |
|
|
Tuesday, August 15 January 24, 1952 - August 15, 2000 My sister and I stood a few feet from the foot of Don's bed in a house oddly silent. His breathing had been so much a part of our lives, the focus of so much of our attention, that the house seemed empty without it. But I also felt a tremendous sense of relief. He was no longer working so very hard. He had reached the summit. "Thank you, sweetie," I said. "Thank you so much." Rémy's hands were folded, too, and she also thanked him. I looked at the clock. It was 5:30 AM. He had walked into the dawn of a clear day, just as I had thought he would. We both approached the bed. His hands were cold but his arms and torso were still warm. I felt his forehead. It actually seemed hot. He had just died. Or had he? It is so hard to accept. Earlier, we had joked about the "signs of death" on the Florida Hospice web site. "Signs of death," it had said, "No breathing." But it was difficult to believe. Is that all? I bent over and put my ear to his chest, then straightened up again. "This is no good," I said. "All I can hear is the hammering of my own heart." Rémy tried, too, but with the same result. "All I can hear is my own heart, too," she said. She reached up and closed his eyes a bit more. They were in the same slightly opened position they'd been in for the past two days, which had made it difficult to tell when he was asleep. We had been warned that the jaw can become stiff very quickly, so I went to get something to hold his mouth shut, as it was slightly ajar. All I found was a large, flat rubber band, which worked pretty nicely, but it looked ludicrous. Then I called the hospice and told them the news. A nurse arrived in fifteen minutes. She uses a stethescope and confirms that there is no heartbeat. "When did you say the time of death was?" she asks. "5:30 AM," I say. She says she'll get ahold of the corner and the funeral home. It's a good thing I took care of the details last week. I'm able to find the folder with their phone number. She has to call the coroner because Don hadn't seen a physician in the past 20 days (the visit from Drs. Peterson and Hancock had been personal, not professional). That business taken care of, I help her wash him. I notice with relief that his bladder has released and his abdomen is once again relaxed. There is no blood in the diaper we put under him, either, nor had there been anything in his bowels to release. Once he's washed, we dress him in the clothes he wore at our March wedding ceremony. I put the leis we wore on him and Rémy arranges the shawl Dean Ornish's wife gave him around him. We change the sheets as well, using the purple set which had formed the backdrop to the wedding ceremony. The nurse had advised us to remove the rubber band and replace it with something soft, like a strip of torn sheet, but it turns out to be unnecessary. His jaw stays closed when we remove it, and Rémy massages away the slight indentation it left. I put a dot of the ashes Divyananda had sent from India on his forehead. His face is more relaxed than I've seen it in a week. He's ready to receive visitors. "He looks good," I tell her. She agrees. "Now, there's probably going to be several people through here who want to see him, and some of them might want to perform some little ritual over him." She raises her eyebrows. "What should we do?" she asks. "Let them," I say. "They can't hurt him now, and it might actually do them some good." I call Jerry's pager. I made it a point that he was the first person I called. Of course, the pager doesn't accept messages, just phone numbers, but at least I made the effort to contact the person who was closest to him the longest first, even if he is someone most of Don's friends dismiss as "problematic." I don't know who I called next - probably Annie, then Diana. Then I called the top-level contacts in each of the sub-lists: Jim to contact Don's gay friends in The City; Dawn to contact the yogis; someone else to call the Commonweal folks and other work-related contacts. Then I got on-line and wrote up a brief announcement for the V List. I also sent out something to someone in the Silicon Valley Gay Men's Chorus, asking them to send it to the whole list. While I was doing this, Rémy went out to the grocery store to get us something to eat and to get two large blocks of ice, which we put under the bed. Although it was a warm day, we were able to keep him cool the entire time. Most of the rest of the day is a blur. I remember Mimi came by and simply sat by Don's bedside quietly for half an hour. I very much apprciated that. Annie came by with some flowers and also helped me a lot with the phone list, especially those marked "other" whom I didn't know. The folks from Glyphic came by, for which I was grateful. Jnani came by late in the afternoon. "I have some oil and some sand from a sacred cave in India," she told me. I nodded. For some reason, I remarked on how thin Don had become, especially his calves. "Oh, yes, sweetie," she says, and sticks her hands under the sheets and starts vigorously massaging his calves. Then she goes after his feet, as if trying to flex them. Rémy found this so offensive she left the room. I found it grotesque, but reminded myself that Jnani's main interaction with Don over the past twenty months has been as massuer. Perhaps this is the only way she can convince herself of the physicality of his death. I leave the dining room and sit on the couch around the corner, where I can't see what she's doing with his body. I'm having trouble accepting the physical reality myself. Both Rémy and I have glanced over at the bed and sworn we could see him breathing. At one point, I was arranging flowers and the window shades at the side of the bed and did a quick double-take. I was sure I had heard him snore. He hasn't been able to snore in nearly a week. He certainly wasn't snoring now. But I had heard him. I was thinking about this when Jnani started to pack up to leave. But before she left, she pryed something black tarry from Don's right hand. She had apparently forced his fingers to curl around it and she had to use more to force his hand open. It was some kind of incense which she said she was going to send to Maha. She also wanted to leave a little of it to send with him to the crematorium, so we got her a little manila envolope to put it in. When she left, there were stains on the sheet where she had spilled some oil, the sheet was disheaveled from her sticking her hands under it, there was grit on his forehead and chest (some of the sacred sand, no doubt), and his hair was toussled. Rémy and I soon had him looking presentable again, though of course there was no way to get the stains out of the sheet. No matter. It had been stained with massage oil and other cheerful stuff many times before. We had said visitation was until 9:00 PM. The mortuary service was going to pick up his body at 9:30, and I had told Rémy that I wanted a few minutes alone with Don before they came. I wanted a few moments when it was just the two of us again, in our own home, a private good-bye. But the service called just before nine to say they would be half an hour late. Just then, four guys from the Chorus showed up. Rémy and I had just begun to prepare our parting gifts, little things we wanted to go with Don to the cremation to become part of his ashes. With the four guys there, it turned into a miniature service. There was music in the background: the Chorus singing "Nigra Sum" from the new CD. Rémy went first. "This is some of my coffee," she said, holding up a small manila envelope. "I know you said at one time that is was your goal to spread a little bit of coffee everywhere, and this will make sure wherever you go, a little coffee goes with you." I had been thinking about my gifts all afternoon and finally had them assembled. I held them up and explained each one of them as I dropped them into my envelope. "These are the things I want to go with you," I said. "This first one is your stash. I came across it while I was looking for your glasses. I know we had disagreements on your use of marijuana, but I figure, hey, it can't hurt you now. Besides," I glanced up at Rémy, "I have it on good authority that this is really good shit. So, have one last smoke on me. "This is a card which shows that you have earned a free chai latte from Printer's Ink. You never know. You might get thirsty in the afterlife. "Here is a CalTrains train schedule so you can always find your way home. No more ending up in Sunnyvale by mistake. "Now, you may be a little embarrassed by this next one. It's free lube from The Steamworks, your favorite bathhouse. But to balance it, here are some ashes Divyananda sent from India. If there ever was anyone who could balance the spiritual and the sexual, it was you. "Last, here is an ammonite, the one I bought on our trip to Moab. It's been cut in half and polished. Half of it goes with you and half stays with me, because half my soul goes with you and half of yours will be with me." "Nigra Sum" had nearly finished on the CD, so I spoke the final words as the Chorus sang them, the same words I used to dedicate that track to Don: "tempus putationis ad venit: the time for new beginnings has come." We hugged each other all around and stood crying for a while. Then I told everyone it was time for Don and me to have some time alone together. I shooed everyone out of the house and sat down at his bedside. "Alone at last," I said to him. Then I could't think of anything more to say. I sat there for a while, then I picked up his copy of The White Crack and began to read "Life Goes On" aloud to him. It was, I thought, a good way for me to tell him I understood why he had to go, and that I would take the lessons he had given me into my heart. I didn't get to read it all the way through without interruption, though. I got about half way when the phone rang. It was Devatorah, his qi gong practitioner from Marin. "I feel he's still there, hanging around," she said. I felt nothing of the kind. I had felt nothing from him but joyous release since he died. "When you have the memorial service," she went on to say, "you should have people stand in a circle and tell him, thank him for what he's given them. That way he will feel free to go." This woman didn't have a clue about what was going on here in Mountain View. There was no need to help him feel free to go. He was gone. He was finally able to do all those things his body had been keeping him from doing for a year and a half. Why stick around? It was time for new things to begin. I thanked her and sort of hurried her off the phone. I wanted to get back to the poem and finish it before the mortuary service arrived. When I got back to the bed I chuckled. "I guess I'm going to have to share you even in death," I said. I finished the poem and Rémy returned right on cue. "I want to change the feel of the house," I told her. I couldn't articulate it to her very well, but I felt that the picking up of the body by strangers was going to feel kind of weird, and I didn't want any of that weirdness around the sacred space we'd made of the dining room. So I went around and blew out all the candles and snuffed out all the incense. I turned on all the lights in the house. I wanted it to feel bright and businesslike when they arrived. Remy cleaned up the area around the bed, removing the flowers and the tables with mementoes. When everything was clean and bright, we sat down and waited. And waited. They were a half hour late already, and it took them another half hour to get to our house at around 10:30. I was glad we had "de-sancified" the house before they came, because once they started, it was nothing but soulless business and consternation. They thought we had the coroner's release form. No, the hospice had that. They thought he was going to the mortuary for visitation. No, he was going there to be held overnight for cremation. I wanted them to leave the sheets. No, they wanted to use the bottom sheet to get him off the bed and onto the gurney. They were afraid they might break the leis if they used their own sheet. I said I didn't care. They said it was their usual practice to use the sheet the body was on. Rémy told them she didn't care what their usual practice was, we wanted to keep the sheet. The other guy was on a cell phone the whole time, trying to get the release number. When he finally got it, he put on rubber gloves and said, "Okay," and they lifted Don onto the gurney. They completely ignored our request and used our sheet to get him on the gurney. They weren't too careful with him either: I saw them hit his head on the rail. Then they wrapped another sheet around him (so, they had their own sheet there after all), and zipped him in the bag. That was hard to take. They rolled him out the door and into their ambulance-like van. I trailed out of the house after them. I knew this was just Don's body, but I had spent the past twenty months of my life taking care of Don's body and it just didn't feel right to give him over to the care of such clods. As one of the men pushed the gurney into the van, the other turned and without any overture gave Rémy a hug. She was not pleased. He gave me one, too. I was baffled. After being so insensitive to our requests, what was this hug all about? I turned away from him and looked back at the house. The just-past-full moon was rising over the roof, serene and joyous. Oh, I thought, there you are. The van turned around in our cul-de-sac and turned the corner onto Villa Street. I felt like waving good-bye. I felt like following the van, maybe running after it down the street, maybe just till I couldn't see it any longer. But then it crossed over Permanente Creek and I thought, crossing over water. Well, then, that's an end of it and I went back into the house. Rémy collapsed exhausted on the sofa, I sat on the chair at the dining room table, on the end, where Don had had his last meal sitting up. We had been up for eighteen hours on only a few hours sleep. But it was over. There was nothing left to be done. I looked over to the bed, now lying naked in the brightly lit dining room. There were no sheets on it, just the air mattress, which lay flat and deflated. As I sat there, looking into the dining room, a whisp of white smoke materialized over the head of the bed. It didn't seem to come from anywhere, it just condensed in the air. It did a single, slow corkscrew turn, then ascended straight up and disappeared into the ceiling. I didn't tell Rémy about what I had just seen. I didn't tell anyone for a long time. I have often thought of that whisp of smoke, and why it happened where only I could have seen it. I think it was Don's final act of love. Just as he had sent me into peaceful sleep to save me the distress of seeing him die, he was now telling me he was free, there was nothing more I could do, nothing more for me to hold onto. "Yes," he was saying, "I am gone. Now you can get on with it." |
 At Rest |
|
Wednesday, August 16 |
|
|
Thursday, August 17 |
|
|
Friday, August 18 |
|
|
Saturday, August 19 |
| Previous week | August 2000 | Following week |