Monday, May 10, 2010

5/10/10

5/10/10

Dad couldn't sleep last night and was so fussy that an increasingly desperate Jaelynn resorted to the ice cream distraction three times during the night! He told Jaelynn “My ass hurts and the asshole is gone.” This seems to be a reference to his back pain, which we think is down by his tailbone.

Tonight he seems to be over it, though he did go through a period of agitation, where he kept repeating “I'm scared as hell. I'm scared to death all the time.” Though he couldn't directly answer me when I asked what he was afraid of, I got a clue when he said “I'll fall overboard and die,” and another clue when he said “what scares me all the time is that I'm lost, I'm lost, I'm lost.” My reassurances that we wouldn't let him get hurt or lost didn't help much.

Even once he calmed down, being lost was still a recurring theme in his conversation tonight. At one point he said, “in common, ordinary language, I wouldn't know where I was,” which could have referred to his being physically lost or to his being “lost” in language when his speech gets jumbled up. Later he said, “Where am I?” “In New York City, in your apartment, in the bedroom,” I answered, routinely. “Not entirely,” said Dad, leaving me stunned into silence since it often does seem as though he's only partially in this reality and the rest of him is somewhere else.

Jaelynn and Suzy rearranged Dad's bedroom, moving his bed against the wall so he can only get out of one side, reducing his chances of falling out, and creating more space in the center of the room so the wheeled walker and wheelchair can maneuver better. Even though the new layout is a lot more functional, I wonder if the change is related to last night's fussiness and today's lost feeling.

Dad seemed to be wrestling with something, so I just let him sit and think, and finally he said, in a serious tone, “if you're completely blind, you're pretty blind, right?”

I got stuck in the subway today due to a track fire, so Dawson wound up alone with Dad after the home attendant left. Having observed us and helped with his own grandfather, he did a good job, even emptying the commode. When I got here Dad was comfortably settled into the recliner and he's enjoying it so much that he's been sitting there for four hours now! When I sat on the bed next to him, Dad said to me, “you're a character, aren't you?” “So are you!” I told him, laughing. If I'm a character, I certainly come by it honestly.

Thursday, May 6, 2010

5/6/10

4/6/10

This week we added a physical therapist and a home attendant to “Team Dad.” Amy, the physical therapist, assessed Dad and says that “the strength is there” but that it's the back pain that's keeping him from walking. This leaves us in a catch-22 situation, because we could give him Percocet, which would be much more effective for the pain, but it makes him hallucinate. The hallucinations don't seem to bother him – he's usually happily traveling in his mind, but they're difficult for the rest of us. Amy gave us a sheet of exercises to do with Dad, and will be coming twice a week to work with him.

The home attendant, whose name I have forgotten, is a pleasant young african-american woman who seems to get a kick out of Dad. She'll be here 3 hours a day for three days a week – just a drop in the bucket, but that's all Medicare covers. At least it'll give Marie a chance to get out and do the laundry and errands.

Dad himself has mastered the hopping maneuver to get from the bed to the commode, and even did it once by himself when Kristen purred Jaelynn into a deep sleep. He also does a kind of somersault move when he realizes that he's on the wrong side of the bed and that the commode is on the other side.

Dad has developed a new desire to physically hang on to whoever is sitting with him – usually the hand, but one night he was in an odd position and couldn't reach Jaelynn's hand, so he grabbed her foot and slept holding on to it all night. Yesterday, while holding Kate S's hand, he started exploring her arm. “You have muscles!” he said. “I'm like Popeye,” Kate told him, randomly. “Do you eat your spinach?” Dad asked, totally remembering Popeye. “Yes,” said Kate S. and proceeded to sing him the Popeye theme song.

“Where am I?” Dad kept asking last night, in a panic. Trying to distract him, Kate S. brought Brad, who'd just arrived, into the room. “Where am I?” Dad asked Brad. “Earth,” said Brad, an answer no one had ever given before. Dad was quiet, processing. “I guess that's right,” he said, and fell asleep.

Today I found a baby starling, too young to fly. I brought it to the vet, who pronounced it healthy, and it was then picked up by a bird rescuer who will nurse it to adulthood. I told Dad this story, and he was very anxious about the little bird. “It's still alive?” he kept asking.

Big changes are afoot here in the apartment, the physical space transitioning to meet Dad's new needs. First, his substantial porn collection – 69 VHS tapes – got packed away, to make room on the shelves for all his new supplies. Then we bought a new recliner and put it next to his bed, so that his caregivers can be comfortable when they have to sit beside him for long stretches. The recliner got stuck partway into the bedroom, and we had to take the door off the hinges so that Jaelynn and Suzy could wrestle it through the doorway. Today, an air conditioner arrived, something Dad would never have dreamed of owning. If it was just me and him, I wouldn't have forced it on him, but I can't ask people to volunteer to take care of him and then have them roasting, especially since most of Dad's caregivers are heavyset folks who don't take the heat well.

In the general hubbub of moving stuff around, we discovered a box of brown glass beer bottles that Dad had been saving for who knows how long. Seeing them made me sad, because those are the bottles that Dad used to make into drinking glasses, when he could still see. Somewhere around here is a whole lot of blue Arizona bottles that I collected for him in 1996. He said he wanted blue glass, so I drank this nasty tea that I didn't really like every day and then carted the bottles from Rhode Island, where I was living, to New York. Dad wound up with so many that they lined the entire hallway of his apartment, where they sat, gathering dust, because Dad didn't want to face the fact that he was too blind to do it anymore.

Saturday, May 1, 2010

5/1/10

5/1/10

Today I was so tired when I got here that I laid down beside Dad and we both fell asleep. We're learning that Dad relaxes when he has physical contact with someone – JD just climbed onto Dad's bed and he stopped wheezing, and in the hospital he slept best when someone held his hand.

Tonight we had a bit of a drama trying to get Dad, who was tired and didn't really want to move, from his bed and onto the commode. He was screaming and yelling at both of us, but finally when we stepped back and stopped trying to pull him up, he kind of hopped over and made it on his own.

Aside from the commotion, Dad is getting back to normal. Not only did he sing a little today, he started asking questions, such as “When did you get into this story?”, which is Dad-speak for “How do I know you?” We did take a brief trans-atlantic voyage – it was pretty funny because Dad was making polite conversation with me as though we had just met on the deck of an ocean liner. “What will you do when you get back to the United State?” he asked.

I am really frustrated with the home care people – at the hospital, the discharge planner told me the nurse would visit us the next day and set up the physical therapy and home attendant services. Friday came and went, with no nurse, but at the end of the day we got a call saying she'd be here today. It's now almost midnight and we haven't heard anything from the nurse. Thank goodness we don't really need a home attendant – between me and Jaelynn and JD, we've been handling it – if we really needed the home attendant, we'd be totally screwed. As it is, I was counting on them to back up Marie during the weekdays, and there's no way they'll get someone here for Monday now.

Friday, April 30, 2010

4/30/10

4/30/10

A miracle occurred -Dad got up and walked today!!! We were totally surprised – we were thinking that it would be a gradual process to get him moving again, but today he got hold of the walker and used it to navigate himself from the bedroom to the living room, with Jaelynn and JD in close pursuit. His breathing and his speech are also better, and he's eating well.

Unfortunately, the problem that's persisting is continence. I don't know if it's because he's lying down so much or what, but Dad doesn't seem to be able to consistently tell us when he's going to shit – tonight he told me he had to pee, so I got him the urinal and we wound up having another shit disaster. Kate S. generously offered to handle it if I was going to puke again, but I decided to stick it out. I have to get used to it. We're running out of clean sheets – tonight I had to use one Jaelynn stole from the hospital. I thought the amount of stuff she took was rather excessive, but we seem to be using almost all of it.

Tonight I was alone with Dad for a couple hours for the first time since this all started. I expected to be nervous, but I really wasn't. He was sleeping and it just felt peaceful.

Dad said “Am I really 86? Wow! I am expected to live a couple more years, maybe 200.”

Thursday, April 29, 2010

4/29/10

4/29/10

We brought Dad home today!!! We almost didn't get to – we were all packed up and ready to leave, but when the EMTs showed up to transport Dad home, they were alarmed by how much he was wheezing and one of them insisted that the doctor come re-evaluate him. Ultimately, I wound up having to make the call – the doctor felt he was OK to go home, but was willing to keep him, and the EMT definitely thought he should stay. I asked the doctor what they would do for him in the hospital and the answer was nebulizer treatments. Since they had already ordered us a nebulizer, I figured we could do those at home, and I felt pretty strongly that every day he stayed in the hospital, pretty much trapped in bed, he was losing muscle, not to mention getting increasingly agitated. So I opted to bring him home.

It was definitely the right choice – this team of EMTs, another pair of women, was much more confident carrying him up the stairs and Dad didn't fuss at all, and when they put him on his own bed, he sprawled out and looked totally relaxed. Marie had had her relative clean the house from top to bottom, and his room was nicely arranged.

It's a huge relief to be home, but we have a lot of obstacles to negotiate – Dad is definitely quite a bit more compromised than he was last wednesday. He's trying to stand, but can't manage it on his own yet, let alone walking. He's still wheezing, and has to be propped up so he can breathe better, and we have to encourage him to cough up the mucous clogging his chest. The hallucinations aren't as bad as before, but he's still having some, and his speech is less clear, partly because he's not breathing well. He developed a urinary tract infection in the hospital, so when he says he has to piss, we have a matter of seconds to grab the urinal and get him set up. He can eat simple things that are placed in his hand, like banana pieces and slices of bread, but he's too weak and shaky to really feed himself or hold a beverage, so we have to feed him. We now have a nebulizer, a humidifier, antibiotics, geezer vitamins, a nose-clearing device and stuff that has to get mixed into his fluids to thicken them so he doesn't choke. At this point, at least until he gets stronger and we get more experienced with all this, caring for him is a two-person job. JD and Jaelynn have both been heroic about giving up their time to be here to help, and the discharge planner at the hospital said she was going to get us a home attendant, who I hope can be back-up for folks like Marie, who is so uncomfortable with this level of caregiving that she opted to give Jaelynn most of her shifts this week (not that she admitted it – she claims to have dental problems).

4/28/10

4/28/10

Correction: Obviously, my last entry, which was dated March, should have been dated April. It took my therapist to point this out, because I am way too zombified to know what month it is.

I've been spending A LOT of time at the hospital, keeping an eye on Dad along with various members of our crew, and crying. When I'm not there, Dad asks for me and tries to climb out of bed. When asked where he was going, he said, “I'm going to Bay Ridge to visit K . . . K . . K . . .” He seemed happiest when Kate S and I each sat on either side of him, one holding each hand. “Small,” he said, and I squeezed his hand. “Big!” and she squeezed his other hand. Back and forth, back and forth. “How many Kates are there?” he asked. “Just two, Big and Small,” I said. “What happens if we combine them?” he wanted to know. “You get one REALLY big Kate,” I told him.

The hallucinations continue. “I thought I was going to be killed,” said Dad, quite unexpectedly. “Killed?” I inquired. “20,0000 . . . 50,000 people. I thought there was going to be a riot with all those people.” “They're peaceful people,” I told him, trying to guide the vision in a less upsetting direction. “I thought there would be more violence,” he responded. “They're just singing songs,” I told him. “Will we have guards?” he asked. “A whole battalion,” I told him. He seemed impressed by that. “How come I wasn't killed?” “Because Kate and I protected you with our magic powers.” “Oh, OK.”

“He was a good man, right?” said one of the nurses' aides, impressed by the rotating cast of characters at Dad's side. Her use of the past tense “was” started me crying again. “I can tell by how many people want to take care of him,” she said. Trying to be comforting, she told me about her husband's death. “We were just kids when we married, 15 and 20. We grew up together. I had my first daughter at 17 and by 20 I had three kids. We were together 35 years. Then suddenly he was gone. I couldn't sleep and I gained thirty pounds. You have to pray.” This only made me cry harder, wondering if her perception of Dad as an old man in his final illness was more true than my image of Dad as a tough geezer going through a temporary struggle.

“I AM GOING HOME!” said Dad in a definitive tone, trying to get his legs out of the tangle of sheets, blankets, oxygen tubes, and IV pole. “You can't,” I said, trying to sound stern. “Why the hell not?” he demanded. I had to think fast. “The last train already left. We can't get a train out until the morning,” I explained. Suddenly, he stopped struggling. “Do we have to transfer between Washington and New York?” he inquired. “No, we stay on the same train,” I told him. “OK,” he said and settled down.

Later, the night nurse came in to introduce herself. “My name is Mercy,” she said, in a Haitian accent. “Mercy,” Dad repeated. “You're here to distribute mercy,” he said and she laughed and laughed.

Monday, April 26, 2010

4/26/10

4/26/10

So much for optimistic endings. Not long after I wrote that he seemed to be on the mend, we gave him his evening meds and started to move him to bed. He had been wheezing slightly all day, but when we got him moving the wheezing got so bad that I was really scared. I called Ethan, who told me to put the phone on Dad's chest. He could hear the wheezing through the phone, and told me that it could be serious and that we had to go back to the hospital. At 11pm on a Saturday night, exhausted from the previous day's events, this was the last thing I wanted to hear, but I called the ambulance.

I knew it would be a fast response when I reported someone with trouble breathing, but I wasn't prepared for all the people who showed up – first a policeman, then four firefighters who stood around the bed looking sympathetic but helpless, and then finally two paramedics. The ambulance, squad car, and firetruck made quite a spectacle outside Dad's building. Once again, they carried him down the stairs and we were off.

At the ER, they took a chest x-ray and the ER doctor told us that he had “really bad bilateral pneumonia” which frightened me but also puzzled me because Dad didn't seem that sick. His oxygen saturation was low at 89 (normal is 100), but he wasn't bluish the way my mother was when she had trouble breathing or coughing. They admitted him, but then we had to wait for hours in the ER for a bed to be available. While we were waiting, Dad was complaining about the late hour, saying, “I'm too old for this.”

At about 3:30am, they finally moved him up to the 9th fl. and JD headed home, promising to come relieve me in the morning. Once he was settled in his bed, he started asking me how far the village was from the port. As the story unfolded, it turned out that he thought he was at an island resort. “Is it expensive?” he asked me. “Yes,” I answered, thinking of the incredible cost of a hospital stay. He seemed worried by that, so I explained that it was paid for by insurance. “These trees are two hundred years old!” he told me, describing their beauty. Later, he invited me to hike with him on the mile-long forest trail. I had to keep him from getting out of bed to start the hike by telling him that it was raining and we would go the next day. Finally, he fell asleep, leaving me to sit there, impossibly exhausted, watching the sun rise.

Early in the morning, a doctor with an Israeli accent showed up. “It's not that bad,” he said, hurriedly. “They called me and said he had really bad bilateral pneumonia, but it's not that bad” and started to run away. I stopped him and explained that since Dad is blind/deaf/forgetful we need to have someone from our crew here all the time and asked him to clear that with security. He said he would.

Later, once JD had come back, two young female doctors came, the “team” who will be responsible for Dad's daily care. They said that they think Dad may have aspiration pneumonia, from getting fluids in his lungs when he chokes while drinking, which he does a lot. They ordered packets of a thickening agent, which we have to put in his juice, milk, soup and any other “thin” fluid so that it thickens to the consistency of nectar. One of the doctors said she was going to have physical therapy evaluate him, because “if he can't walk, he can't go home.” I was really shaken by that statement, and it must have shown on my face, because she quickly backpedaled, saying that she just meant he might have to go to a temporary rehab center to recover. I'm still worried about that idea, but my friend Brad told me that his experience is that these rehab centers really do try to get people on their feet and home as quickly as possible to save money, so I feel less concerned that it's someplace he might just languish and deteriorate.

Finally, around 11am, I staggered out into the rain and headed home. I needed to sleep, to prepare myself for work that evening, but I was so stressed that it was hard to sleep. I managed a couple of fitful hours and then showed up at work with the cognitive capacities of a snail. After work, I called Jaelynn for a report and found out that she and Dad were on an imaginary train trip. A hopeful sign: Dad started reaching for Jaelynn's girlfriends breasts. Not my favorite behavior of his, but definitely a return to his old ways.

When I finally got home, I felt like I do when I have just spent a couple of day in Central Booking after being arrested at a protest – a combination of sore, exhausted, hungry, stressed, and at my wits' end. I fell into bed and had a hard time getting up when my alarm went off at 10am today.

I got to the hospital today at 3pm, relieving Marie an hour early, to her obvious relief. She didn't say much, just that it had been a hard day and that Dad was seeing “things” all around. Dad was definitely doing some major hallucinating, and I think that was hard for her to handle.

At about 3:30pm, Dad decided that he had to pee and INSISTED on getting out of bed to do it, though he's been using a urinal without a problem for days. I couldn't talk him out of it and had to hang on to him while he tried to throw me off and yelled at me to get off of him. He got one leg out of the railing and I had to yell for a nurse to help, since they take a long time to answer the call light. I was really, really upset about having to physically struggle with Dad. He has never been anything but gentle and amiable with me and this new behavior was heartbreaking. Once the nurses got him settled, I sat there and cried and cried, which is how the physical therapist found me. Dad was sleeping, so I explained the situation, including the fact that Dad had been walking until thursday, and he said he would come back.

Dad needed a new intravenous line, and the nurses, having observed the earlier commotion, decided he needed to be calmed down before they could put some in, so they gave him a Haldol injection, which made me cry more because sedating demented patients to make them easier to work with is really against my values and I really didn't ever want it to happen to Dad. As it turned out, the nurse stuck Dad three times and couldn't get a new line in, so she decided to quit and let a doctor try.

Despite my overwhelming sadness about the current situation, and the feeling of having had the core of my existence suddenly displaced, we did have one funny moment. A nurse asked Dad my name, and he thought for a moment and then said, “Shakespeare.” It is true in an odd way – I'm named after a character from the Taming of the Shrew.

I am still really grateful for the support of my friends – Brad and Samantha joined the rotation today, shortening the shifts for everybody else.