August 06 - August 12, 2000

August 06 - August 12, 2000

Sunday, August 6 It has gotten very difficult to know Don's needs. We sort of run on a schedule, presuming he'll be hungry at meal times, want to sleep at night, and ought to take his medications at regular intervals. But we really have no idea what his inner needs are. In particular, we have no idea if he is in pain. His face is almost completely expressionless now, and he never initiates communication. This monring, both the nurse and I were trying to find out if he is in pain or discomfort. It seems to me that the angle at which his head is cocked - all the way over onto his right shoulder - must be uncomfortable. He has been in this position for at least a day, and the muscles in his neck are so tight that I cannot straighten him out. Nurse Julie was speaking very loudly to him, "Don, are you in any pain? Do you feel any discomfort?" Nothing. His eyes were open, but he wasn't looking at her, just staring. She took his hand. "Squeeze my hand if you're in pain," she said loudly. Still there was nothing. I gave it a try. "Sweetie, we want to know if you're comfortable. Are you in pain?" "Do you want any morphine?" Julie added. "No!" he said. It was whispery, voiceless, but very emphatic. Julie looked surprised but satisfied. "I guess he told us," she said. "Yup," I said and grinned.
Monday, August 7 Mark and John had Rémy and I over for supper. It was very kind of them. It was also quite a different environment. Corey is, as John says, "all boy." He was running through the house and having loud adventures nearly the entire time we were there. It was quite a contrast to our house, where we try our best to be soft-spoken, quiet, and even-toned. During dinner, Mark explained to us the wonders of technology: to wit, the new style of "tippie cup" that lets Corey drink at the dinner table without spilling juice all over the table. "That's really remarkable," I said. "We could use one at home," Remy said. I agreed and got information from Mark where to find them at the local Target store. When we got back, Don appeared to be sleeping. Jim had come down from the city to "man-sit" him while we were at dinner. He has been the most reliable help we have had.
Tuesday, August 8 The "tippie cups" were in the infants department in Target, just like Mark had said they were. Next to them was an array of nursing bottles. I was inspired. Don's ability to suck juice through a straw had been declining. He either lacked the coordination to make a complete seal around the straw, or he lacked the strength to suck the juice all the way up the straw into his mouth. Sometimes the juice would make it nearly all the way, then he'd let go and it would sink back down into the bottle or cup. The nursing bottles would solve this problem. I bought two different styles, which turned out to be a good idea. He liked one better than the other. We had to widen the opening in the nipple somewhat. I used Don's exacto-knife to do that. It was not the last time that Don's card-making tools would come in handy. Using the bottles, we were able to keep him fairly hydrated. But it also meant we had pretty much given up on feeding him solid food. He would take a spoonful of applesause or pudding in his mouth, but he wouldn't always remember to swallow it. When we would give him his next Decadron, we would often find some of the previous meal still in his mouth. His teeth were getting badly coated and needed brushing, but he would bite off the end of the toothettes we tried to use to clean his mouth. I'm worried that the thrush is getting worse and causing him discomfort, but it is no use asking him. He does not answer and his face does not change expression. We are still able to get him to take the Decadron, though. If you put it on his tongue, he'll take it and start chewing it. But he doesn't always swallow. I don't know if it's doing him any good, just dissolving in his mouth. It can't taste very good. We have not been as diligent with the "swish and swallow" anti-thrush medication. I guess that's because we've been so focused on getting him to eat or drink anything that we've been reluctant to enforce the 15-minute waiting period on either side of the Nystatin. If a window of opportunity opens when he's likely to eat or drink, we tend to be right there with some juice or smoothie, rather than present him with the Nystatin and run the risk that he'll be asleep or unresponsive by the time we've waited the 15 minutes.
Wednesday, August 9 Remy and I talked about her returning to Wisconsin. Don's state does not seem to have changed much in the past five days. Maybe what everyone was saying is true: he could plateau at this level for quite some time. When I had called her to ask her to come out, it was because I thought his death was immanent. That had been three weeks ago. "I know it's the height of your retail season," I said. "It's not so busy," she said, "but I do need to go back. All my workers go back to school in a week and a half and I have to hire new ones." We agreed she'd return next Wednesday. I called and cancelled the August 12 reservation for the memorial service. That leaves August 20 and September 3. I slept in the livingroom again tonight. Before I bedded down on the pad, I crawled into bed with Don. I crouched over him, careful not to lay my weight on him. I wanted to be close, to hold him, to embrace him, to convey my love to him in a tangible and unmistakeable way. I kissed his face and chest. I gently tongued a nipple. Was I being merely self-indulgent? I hoped not. He gave an audible sigh and put his right hand - the only one he can move - on my head and stroked my hair. He also pulled my eyebrow and tugged on my ear, part of the random grotesqueness the tumor injects into every moment we have now, even our most tender and intimate. It was the last time we made love.	Bedside
Thursday, August 10 I thought we might have a quiet morning at last, now that the tree trimmers were finally done and we weren't subject to chain-saws at 8:00 AM. Well, I was partly right. The tree trimmers were gone, but a little after 8:00, we were serenaded by no less that five fire trucks, one ambulance, and a supervisor's car, all of which came down Villa Street wailing their sirens full bore. I never did find out why. I had not slept well. Throughout the night, I had been awakened by small, high-pitched sounds coming from Don. They were somewhere between a whimper and a sigh, a most heart-rending, quiet cry. Each time I got up and went to his bedside, I would find him with his eyes partly open, but no other sign that he was awake. I would talk to him, try to reassure him, and once bent over, thinking he was trying to say something. But each time there was nothing. In fact, I have heard nothing from him since his "No!" last Sunday. He is no longer even responding to direct yes-no questions. I was in the livingroom paying bills when Remy suddenly called out to me, "Lou, I think Don is trying to say something!" I came quickly over to the bed. She had been feeding him lunch. As I bent over the bed, I was expecting more of the high, thin cries, but instead I saw he was moving his lips, and his eyes, which had been staring at the ceiling, tracked me as I approached. Remy said, "His eyes suddenly became more alert when I called your name." I leaned over, trying to catch what he was trying to say. "I... Er... Ouu.." That was all he could get out. It seemed to take all his energy to say it. It must be like running up ten flights of stairs to the roof of a building then trying to shout a message to someone standing on the street a block away. I took his hand. "I know, sweetie. I love you, too. Thank you. Thank you for loving me." It seemed he was trying to get more words out, but nothing came. The fire trucks started rumbling back down the street from whatever fire it was that hadn't happened. Anything he might have said was drowned out in the street noise. Maybe it had not been such a good idea to put him in the front room after all. Maybe I should have put him in the meditation room, further away from the street. But it would have been cramped, and further from the bathroom and kitchen. Crowd control would have been easier, perhaps, but the meditation room doesn't have a stained glass window in it, like the dining area does. Oh, pointless, pointless! None of this second-guessing is any good. It's just a way to distract me from what's really going on. He's dying.
Friday, August 11
Saturday, August 12 While changing sheets to wash him, Marie the home health aid notices that Don's abdomen is distended. She call me over t look. It is as taught and round as a cantalope. There is no new urine in the bag and none flowing through it. "He must be in great discomfort," she says, and urges me to call the hospice nurse. I call the switchboard, which puts me on hold while they contact the nurse. After a while they say the'll call me bck when the nurse answers the page. Fifteen minutes go by. As we roll Don over to wash his legs, I notice pus and urine leaking around the catheter where it enters his penis. I am very upset and Marie is getting more so. I call the hospice switchboard again, and they say to expect a call back in 30 minutes. Even though Don's face remains unexpressive, his muscles are tight. I decide to give him some morphine. It is obvious the catheter is going to have to come out and I don't want it to be painful. I am so nervous drawing the .1 ml of Roxinol into the syringe that I tip the bottle over and spill most of it on the kitchen table. As I'm giving Don the morphine, Marie says she's tempted to remove the catheter herself. "But they'd really yell at me if I did," she says. "Maybe when the nurse calls, you can ask her how to remove it and then you can." After another fifteen minutes, Marie is about to call the hospice directly on the cell phone in her car when the phone rings. It is Julie, the case manager nurse who was here yesterday with a hospice trainee. She says she's in San Carlos and can get here in half an hour. Knowing she can't possibly make it that quickly, I ask for and get directions on how to deflate the balloon inside the catheter and remove it. Then I say, "I think the catheter should stay out at least 24 hours." "I don't think that's a good idea, medically," she says. "If he can't urinate on his own, we'll just have to put it back in." I hold my opinion, more interested in getting her here quickly than in trying to make a point. After she hangs up, I start the procedure to remove the Foley. I use one of the small syringes to draw the saline from the balloon. But the syringes are small, holding only one millilitre, and I have to do it several times before I feel suction pulling the plunger back in. The balloon empty, the catheter can now safely slide out of the urethra. Marie gently pulls it out. The end is bloody and seems also to have pus on it. Don immediately starts urinating red piss. Remy has joined us and quickly gets a urinal in place. It collects about 200 ml before the spontaneous flow stops. Don's abdomen is no longer distended, but it still bulges significantly. The pressure and discomfort this caused him must have been intense. Why didn't we notice? Why didn't he signal us in some way? Julie and the trainee both pressed on his abdomen yesterday, and Remy pointed out that it seemed distended to her. But the nurse had said there was nothing wrong, even though we saw almost no urine in the bag. Had we missed important signs of agitation? Julie arrives and uses external pressure to squeeze another 200 ml out of Don. The rest, she says, will have to be gotten by inserting another catheter. "Okay," I say, "but I don't want it to stay in. Once he's drained, I want you to take it out." We go over to the sofa to talk about it. "In my experience," she says, "if the reason we used a catheter in the first place is because he was suffering retention, if he couldn't urinate voluntarily..." "Yes, that's what we thought," I say. "Then that's liable to still be the case now. He'll suffer retention and we'll have to put it in again." "I still want to try it." "I don't think it's a good idea, medically." I found this unpersuasive. I had been concerned about how long the catheter had stayed in without being irrigated, but when I mentioned it to Julie yesterday, she said that catheters were irrigated once a month, and once they were in were rarely removed. That struck me as wrong, and her lack of noticing anything wrong with Don yesterday has led me to distrust her judgment. Simply telling me it was "not a good idea, medically" was not going to cut it. What I really wanted was a doctor to come and look at Don, not just hear his condition described over the phone or discussed at a "team conference." I wanted doctoring, not case management. All of this struck me as impolitic (and perhaps even impolite) to say to Julie, so instead I just said, "I would like to try it, anyway." To her credit, she didn't offer any further counter argument. Instead, she said she needed to get some equipment from her car and left to get it. Is she calling for back-up? I wondered. Then I remembered that I had back-up, too. I remembered that Dr. Peterson's home phone number was in my journal. I took a chance and called her. I was elated when she answered the phone herself. "I hate to ask you for a professional opinion on your weekend, but maybe you can give me some friendly advice," I said. She agreed to and listened to my description of Don's condition, leading up to removing the Foley. "I'd like to leave it out for a day to see how he does." "I don't know about a day," she said. "You might try it for eight hours and see if he urinates." I was so relieved. Here was a middle ground I could stand on. I thanked her. "Do you want me to come for a visit today?" she asked. "Yes, please!" I said. I was surprised how desparate I sounded. "I'll be there this afternoon. The important thing to remember with Don is what is the goal? If you're most interested in what will make him comfortable, then do what you think will accomplish that goal." This was exactly what I had been telling Don's potential visitors. It was good of her to remind me of it. We said good-bye and hung up. Julie had returned from her car by now and was standing at Don's bedside. "What did you decide?" she asks me. "How about a compromise," I say. "Eight hours, and then we'll see how he does." "I still think it's best to leave it in, once we get it in," she says. I make no comment. Remy is watching me, wondering, I think, if I will hold my ground. Julie prepares a syringe of morphine to ease Don's discomfort when the fresh catheter goes in. Before she gives it to him, I notice it's much more than the .25 millilitres that knocked him out for six hours last time. "How much are you giving him?" I ask. "Point five ml," she says. "I gave him point one ml earlier," I say. "It's written on the chart," Remy points out, indicating the chart on the side of the fridge. "Oh," she says. "I thought you said one millilitre, not point one." She squirts about half the syringe back into the bottle and gives him point two millilitres instead. (That's curious, I said to myself. I'd've thought when she found out I'd given him less that she thought, she'd've increased the dose, not decreased it.) But I have other things to do than follow that thought. I speak quietly and comfortingly to Don, stroking his head as Julie inserts the catheter. He tenses up some as it goes in, just like the last two times. Once it is in, the small leg bag Julie has attached fills up quickly. Twice. (It turns out the equipment Julie was looking for in her car was a normal-sized catheter bag.) Remy is kept busy emptying the bag and trading it off for a urinal. All told, we emptied almost a full litre of mostly blood-colored urine from Don. Towards the end, the urine resumed a more natural color, though it was still tinted. With the immediate drama over, we went into the livingroom again. "I'll have to get a catheter bag from the office," Julie says. "Do you need anything else?" "No, nothing." "Yes," Remy says, "Chux." "Oh, yeah. We've been going through them now that his bowels are moving again." She leaves, saying she'll be back soon, and we can make a decision about the catheter then. While the nurse is gone, Remy sits down with me on the couch to play "Devil's advocate." "Are we willing to have him just urinate in the bed?" she asks. "Yes," I say. "We can put a diaper under him like we did before." "Can we keep him comfortable and dry?" "Sure. The home health aid will wash him daily, and you and I can take care of the rest. It's a little more work, but that's okay." "Okay, we can do that. For how long?" She has me stumped there. I shake my head. "I don't know." The question forces me to face my true motives. I realize this is more than a medical decision - or, rather, that it never was a medical decision. What I'm really going on here is my instict of what Don wants based in part on our conversations months ago about tubes and medications and dying naturally. I begin to feel an obligation at least to try it "Don's way." Julie returns about an hour later with the proper drainage bag. While she was gone, I had readjusted the strap-on leg bag. In doing so, I noticed the flow of urine had stopped again. Julie hooks up the new bag, then we all adjourn to the living room sofa again. "Do you still want me to pull it out?" she asks. "Yes," I say. "I'm against it," she says quite frankly. "There's good reason to believe he hasn't regained control of his bladder and will begin to retain urine again. We'll only have to reinsert the Foley later." I'm thinking to myself, I don't care if you have to reinsert it every third day, it's coming out and staying out. But Julie has been rehearsing her reasons, too, and she goes on to answer what I haven't said. "There's additional trauma when it's reinserted," she says. That takes me aback. I don't want Don to be injured. "What do you mean by 'trauma'?" Remy asks. "Trauma," she says, somewhat stumped. "Irritation." She seems at a loss for words. "It doesn't matter," I say. I take a deep breath. I'm going to have to make this decision based on what I think is right, not on what I can justify objectively. That is what Don has trusted me to do. It is a deeply frightening responsibility, but I cannot shirk it or brace it up with medical reasoning. "I feel I have an obligation to Don," I say. "We talked months ago about how he wanted to be treated. No tubes, no IVs, and no respirator. And that goes for the catheter, too. It comes out." Julie nodded, looking me in the eyes. "I recognize you're speaking for Don in this matter," she says. "I'll pull it out." Remy winces. "'Remove it', please, not 'pull it out.'" Julie smiles. "Yes, I'll remove it." We reconvene over Don in the dining alcove that has become his hospital room. He is still quite awake, even though it's been over an hour since he had the .3 ml of morphine. He is almost agitated. His arms are curled up on his chest and twitching. I'm surprised at this and say so. "The one other time we gave him .25 ml of morphine he was out like a light," I say. "He was asleep in a matter of minutes and slept for six hours." "Maybe you should give him an Ativan," Julie suggests. "It's time for his mid-day Decadron, too," I say. It's actually a little past time. I go get the pills and return to the bedside while Julie attaches the syringe to draw the saline out of the Foley balloon. I prop Don up in bed a bit more and hold his head. "This is your lunch-time Decadron, Don," I tell him, "and this is Ativan." I insert the two pills in his mouth like a priest giving communion. "I'm hoping it will relax you." Julie's syringe is much more efficient at drawing out the saline than the dinky one I used was. Two pulls and the balloon is deflated. Don's head is resting in the crook of my left arm. "Julie is going to remove the catheter," I tell him. "I'm hoping that will make you more comfortable. I want you to be as much in charge as possible. That's why Julie is removing the catheter. I know you wanted this process to be as natural as possible." "Yeah," he breathes out in a long sigh. My heart leaps. "Okay," Julie says, "it's out." The end is shiney with blood. It looks appalling. "It's all you, now," I tell Don. "You're in charge." "Yeah!" he breathes again. His body relaxes. The twitching in his arms ceases. He drinks a little apple juice to wash down the pills, swallowing with a little effort, but swallowing. While Julie and Remy get a diaper under him, I say, "Tonight is the peak of the Perseid meteor shower. You wrote a poem about the Perseids, I think." I go get The White Crack and read to him: Meteor Shower Is it: A simple rock tumbling down the slopes of gravity? A fireball vaulting through the midnight sky? A shiny needle drawn through black velvet? Or none of these, but only a perceptual trick in which the solution to a simple math problem - given velocity, mass and direction - is displayed in the sky in such a way that even smart people wonder what it could possibly mean? All I know for sure is the belief I hold about it in secret. That, and the fact the very last thing it did in this world was turn into light. His eyes close and he drifts off into sleep as I finish the last two stanzas. Even Julie is amazed at how much his body has relaxed, and how quickly. "You were right," she said, "it was what he wanted." She packs up her things and prepares to leave. Remy and I thank her. She stops at the door and glances around the screen at Don, deeply asleep. "It's the Ativan," she says. "He'll be relaxed now." Remy and I glance at each other. We know from experience that Ativan takes at least an hour to have a calming effect on Don. It's been less than ten minutes since I gave it to him. But we thank her again. Just outside the door, she turns and promises to have more morphine delivered today to replace the bottle I spilled on the kitchen table. We wave good-bye. As soon as she is gone, Remy and I collapse on the sofa and heave a collective sigh of relief. I feel I have done a mitzvah. I feel blessed that I could have done one final service for my lord. Now, he too can turn into light.

© 2000 Louis Flint Ceci / ceci@best.com