Dennis Southers’ dying
9/11/96: 10:20AM: Think to take notes WHILE I'm talking with Leroy, but then decide to make notes after I get BACK from talking with him, and THEN decide to start DENNIS CHRONICLE (since this will go on LONGER than what could have been MOM'S Chronicle), just to keep all these jottings in one central place. He said that Dr. Fine at LICH agreed that Dennis could be taken to LICH three times a week for HEMOdialysis, rather than the ineffectual peritoneal dialysis which has still left one of Dennis's legs swollen, but that the fellow who'd have to perform the minor operation on Dennis to put the catheter in his ARM for the hemodialysis is on vacation now, so it won't be acted on immediately. Poor Leroy caught a cold yesterday (when he answered the phone this morning, he didn't even SOUND like himself) and said he tried phoning son Leroy to say he wasn't coming, but they didn't answer the phone, so he didn't want them to meet him at the airport when he wasn't coming, so he was going anyway. I asked him when he expected to come back, and he said "I'm not going to bother them; they're both teaching, so I'll be back in about a week: next Wednesday, or maybe a day or so after that." He gave me Dennis's mailbox key (he'd SAID he was leaving before noon for his 1PM plane, but as we talked he checked his watch and said the car was coming at 10:15AM, since they wanted him at the airport 1.5 hours before the flight! Additional security measures, I guessed) and said twice that he'd phone me when he got back, so I could give the key back to him. He gave me two Delicious apples from the fridge, saying they didn't keep very well. Of course, he only told me on a message last night that he was leaving the key on the table for me, rather than that he was leaving earlier. We sat on the stoop and talked while he waited for the car, saying it was better to be early---he could read---than to be late and suffer the stress of being late: "I don't need any stress!" I brought up Berezin's starting the work in October: "I didn't like that inspector!" (John says he's "not used to working with ethnics.") But he DID write down 1) needed stove, 2) needed refrigerator, 3) needed DOUBLE sink to act as bathroom sink, 4) needed work on floors, 5) needed new door-jambs because rotted wood gives NO security to current door-locks. John said "I think they can only report what was on the original CALL; they can't add anything on their own." (That sure sounds stupid!) Leroy keeps insisting that "it's all MAINTENANCE" hoping it won't be added to the rent bill, though he says that 1/40th the cost of a stove per month wouldn't be THAT bad. He also described the pleasure of taking Dennis in a wheelchair to Orchard Street, where he found a great pair of pants for $8, only $8.50 with tax, and only $2 to have it hemmed, and he found a down coat (so he DOES intend to spend the winter!) for $80, but Donna told him (while telling him about ANOTHER Jewish area a couple of blocks BEYOND where they were; she'll take them there sometime) he could get it for $60, so Leroy is "Hoping to jew them down to $70." Hope he doesn't use that TERM! I asked if the word-processor was taken over yet, but Leroy looked glum and said he's not nearly ready for anything like that: "He can barely sign his name." But he said he was walking around a lot, talking better, and everyone's hoping that when he gets back on hemodialysis his condition will improve greatly. "The roommate went away and never came back," he said with some sense of amazement, but I recalled I described him as being "On his last legs," so he probably died and there's been no one to replace him in the room yet. At least I hope that means Dennis was shifted to the window. I didn't mention the fact that the phone I gave them seemed to have a very weak ring, so I don't know if they made any progress on buying a NEW phone to put in. John surprised me by asking for Dennis's number, though I'm not sure he's actually going to call. So now I have to think about going to see Dennis when his father's not here: I didn't call Dr. Sanjana when he came in at 6PM last night to make his rounds because I was at Village Playwrights. SOMEWHERE here I have his schedule, so I'll have to make a point of going in when HE'S there, so anything I find out will come from OFFICIAL sources: the nurse didn't even seem to know whether Dennis went out WALKING or in a WHEELCHAIR which I returned last night: John said "FRAUD."
9/13/96: Went to see Dennis yesterday, and he's sleeping when I enter about 2:25PM, having said I'd arrive about 2PM. He's lying with his shoes on, and wakes quickly and asks how long I've been there. He says he wants to sit in a chair since he's so tired of the view from his bed. He insists he walks around the halls every day, but the only person, Jose, his father knows HE doesn't care that much for. I point out the schedule and he says he's not that interested in the movies or the cooking classes, but IS interested in the library, but no one knows anything about it until I find it's open for two hours on Monday and Friday---he really SHOULD study the calendar, the first sheet of which I take off as a "souvenir" for his files. He suggests others here may want to watch my video of my trip, but I ask and get told I can use it anytime no one else is using it. His doctor has said he should NOT take Crixivan, but no one's sure why. He said that Dr. Sanjana HAS talked to Dr. Fine at LICH but that the fellow who'll do the operation to remove the catheter for peritoneal dialysis from his stomach and replace one in his arm for the hemodialysis is on vacation until Wednesday, by which time Dennis predicts his father will have returned from New Hampshire, considering it his "moral duty" to be with Dennis as much as possible. He still wants to return to Hicks, but realizes he probably wouldn't do it before the work on the apartment is finished which starts in October. He said Dana was there once, Donna 2-3 times, Marvin more, Andrea once, "and of course you," since I was with him when he MOVED to Rivington House on Thursday, August 8; visit on Sunday, August 11, in room 214; visit on Wednesday, August 21, just before he moves out to room 210; again on Friday, August 23, while he's getting his first blood transfusion; and then Thursday, September 12, for my FIFTH visit in SIX weeks. He phoned me yesterday as his FIRST call on his new telephone, and asked me to give his number to Andrea and Dale and Michelle Morales, his caseworker at CHP, who much appreciated my phoning her. His transfusion was no big deal: he had to wait a day or two to feel better from it, but it didn't hold him up very long. I tried asking for his hemoglobin count, but it turned out they didn't have a copy of Dennis's Health Care Proxy form, so they couldn't tell me the numbers "for confidentiality." He also said he felt so weak he wanted to do some kind of upper-body work, so I talked to Celine, the Philippine nurse, who said she'd make a note to talk to the physical therapist, as everything must be done upstairs and NOTHING in the room at all. He said he wanted a copy of Body Positive (and not Metrosource), wouldn't mind if I brought ice cream, and would appreciate it if I could bring him a copy of Algren's "Walk on the Wild Side" from the library. He also thought his address book might be on his bedroom chest of drawers. We hugged and said he needed to eat more: he was disappointed that he still weighed only 99 pounds, even though I helped him eat two Baci candies and one almond roca, which he likes, and which Spartacus said I could get anywhere in Chinatown. But it's still depressing to see him so weak: he didn't seem UP to talking about sorrow or anger or suicide as I thought he might, and he puzzled about his dad's fear of having him back at 167 Hicks: he talked about the Christmas party and "What am I supposed to do afterward? Come back here or sleep at home?" Dr. Sanjana didn't seem to be around, and once when I went out to ask the nurse a question, a volunteer with a truly pathetic burned-looking black woman said that the nurses were changing shifts, giving reports in the dining room, so that I'd have better luck if I came back in 10 minutes. Dennis complained about the nurse waking him up because "he was sleeping too far down in the bed" for her comfort. He still gets dialysis at 12, 6, 12, and 6, and has an hour of feeling cold afterwards, but I said he should NOT hesitate to get out a scarf if he feels like it, and we agreed he should be more forceful in knowing about his condition and asking questions. Ron Lowe, reasonably handsome in a stern way, came out to tell me I couldn't get confidential information about him. But I shook things up, filling in before Carolyn's visit on Friday and maybe others over the weekend. Visit early next week?
9/20/96: Visit (SIXTH visit in SEVEN weeks) from 11:15AM-1:30PM, just after his dad arrives, and Dennis just isn't improving. He doesn't shower at ALL: his dad washes him in the bed. Ask the nurse when he's getting his catheter replaced and she says to ask Dennis! I say HE doesn't know, and she waves me off to do something else. His roommate is back, wheeling back and forth with his wheelchair which Dennis said he'd actually applied for a ROOM-change to get away from, particularly his cruising out at 1AM every morning, waking Dennis after he'd gotten to sleep after his midnight dialysis. But then he said he learned to live with it by tailoring his sleeping and taking naps during the day. He was napping when I arrived, then apologized for how long it took him to wake up. He was clear-eyed, but as I've noticed before his gaze is somewhat LOPSIDED: his head slightly tilted, his one eye is HIGHER in the socket than the other is, making him ever-so-slightly wall-eyed. When he goes into the john to comb his hair, he looks much better, but he's disappointed when we go the dining room to talk "because it'll be quieter," but THERE the TV is turned on LOUDER than in his room, and some nurse comes in to fill a water pitcher from the tap and a patient comes in to noisily eat lunch, so we go back to Dennis's room. I brought in his Health Proxy form, which the Social Worker copies and returns to me; then after his dad called I called him back and asked him to bring one of his copies of Dennis's Living Will, which he does, so at least THAT's in the file, though the SW said that THEY had copies that Dennis and his dad could fill in. Which reminds me of the call from the woman from the Rand opinion poll of 3500 AIDS patients: she said that Dennis's dad knew NOTHING, and would I consent to be with her when she returns to ask him the questions, including final ones like "If you knew you would be in a coma for the rest of your life, would you consider suicide?" I'd be interested to hear his answers to questions like that, since we've never talked about it, and Marvin and he seem never to have brought up the subject again. When I talked to Vicki about it this morning, she INSISTED that I had to do something about his not taking Crixivan and find out WHEN he's going to change from peritoneal dialysis to hemodialysis, having the opinion that he's really DYING and no one's about to admit it. I blush to admit that I haven't managed to corner his doctor yet, but only as of YESTERDAY could I even DO it, bolstered by my second-listing on his Health Care Proxy form. Dennis ate much of the fish sandwich, much of the soup (though I drank the second bowl which Jose's mother brought in [ostensibly for Dennis's father]), and did NOT ransack his wastebasket for the two chocolate cookies and the brownie that he threw away. He praised himself for being up to 105 pounds this morning, but sadly his SECOND leg is now swollen, so it's probably all water, just as his 102 pound advance was due to the water in the FIRST swollen leg. He says he doesn't worry when he's above 100---even though his USUAL weight was around 120. He keeps insisting to the doctor that he ALWAYS had trouble gaining weight, but he still seems to be flirting with vegetarianism because his father is. When I asked about that, Dennis confessed that his MOTHER was really the hard-headed one who kept the family sensible, that Leroy had trouble paying the bills when she died, keeps talking about HIS bills to DENNIS, which he says has NO interest for him AT ALL (which is sad), and Leroy even rather berated me for talking the bills to DENNIS, when he'd have to get them back to Hicks Street to PAY them. Dennis is STILL looking forward to coming back to Hicks, noting that the work won't be done until sometime in October. He actually got SILVERWARE for lunch, saying he usually got it, at random, about once a day. His dad came in with an address book, and I said I'd bring MINE in to see who he could add through mine. They keep "cleaning up" around him, putting things away that he thinks someone might have taken; they threw Marj's flowers away before the iris had a chance to bloom: she brought them on Saturday, they disappeared "around the middle of the week." He asked for Friday's Times, put the mail in his closet because he said things were tight with the roommate back (not knowing why he was gone) and I left feeling more helpless than ever.