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.”
Friday, April 30, 2010
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).
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.
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.
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.
Saturday, April 24, 2010
4/24/10 Part II
4/24/10 Part II
Which brings us to today. Before I left, I called JD to see if anything was needed at Dad's. Oddly enough, the answer was “steak.” Dad had mentioned steak a few times this week – very odd for a man who can go a year without eating red meat. Worried that it would be hard for him to chew, I had tried to placate him with ground beef, and then with pot roast. But apparently today he kept asking for steak.
So, I took my vegetarian self to Whole Foods and asked the butcher for the tenderest steak he had. It was thoroughly disgusting and shockingly expensive, but for Dad, anything. Luckily, JD was on hand to prepare it because I wouldn't have known how. He used fresh ground pepper, salt and cumin.
When I got here, I found the Queer Family was out in force – JD, Jaelynn, Suzy, and Dawson, a former client, were all here, and Dad was resting on the couch. Apparently he got very agitated about being confined to bed, so they brought him to the living room, where he stayed most of the day. He kept struggling, switching positions, and getting so anxious about the pain that he was wheezing, but we finally got him comfortable. JD fed him his steak, he pissed, and I put on some soothing pan flute music.
While he was eating, he kept asking “What are all these kids?” pointing to an empty space near JD. He's hallucinated children before, but hasn't mentioned it in a while. I wonder if the pain meds are making him a little loopy. He seemed worried about these kids, so I tried to reassure him, “they're just paintings, Dad, they're not real, it's artwork.” “Really? Amazing!” he said, relaxing.
After eating, he seemed to be awake, but drifting. “I was watching these ships go by,” he said. “Ships go by?” I asked. “Yeah, how often do they go by?” he wanted to know. “I don't know, just relax and enjoy them,” I told him and he did.
JD decided to follow up the steak with homemade chocolate chip cookies, the first thing that Dad really seemed enthusiastic about all day. “Smells good,” he said. I guess he's on the mend.
Which brings us to today. Before I left, I called JD to see if anything was needed at Dad's. Oddly enough, the answer was “steak.” Dad had mentioned steak a few times this week – very odd for a man who can go a year without eating red meat. Worried that it would be hard for him to chew, I had tried to placate him with ground beef, and then with pot roast. But apparently today he kept asking for steak.
So, I took my vegetarian self to Whole Foods and asked the butcher for the tenderest steak he had. It was thoroughly disgusting and shockingly expensive, but for Dad, anything. Luckily, JD was on hand to prepare it because I wouldn't have known how. He used fresh ground pepper, salt and cumin.
When I got here, I found the Queer Family was out in force – JD, Jaelynn, Suzy, and Dawson, a former client, were all here, and Dad was resting on the couch. Apparently he got very agitated about being confined to bed, so they brought him to the living room, where he stayed most of the day. He kept struggling, switching positions, and getting so anxious about the pain that he was wheezing, but we finally got him comfortable. JD fed him his steak, he pissed, and I put on some soothing pan flute music.
While he was eating, he kept asking “What are all these kids?” pointing to an empty space near JD. He's hallucinated children before, but hasn't mentioned it in a while. I wonder if the pain meds are making him a little loopy. He seemed worried about these kids, so I tried to reassure him, “they're just paintings, Dad, they're not real, it's artwork.” “Really? Amazing!” he said, relaxing.
After eating, he seemed to be awake, but drifting. “I was watching these ships go by,” he said. “Ships go by?” I asked. “Yeah, how often do they go by?” he wanted to know. “I don't know, just relax and enjoy them,” I told him and he did.
JD decided to follow up the steak with homemade chocolate chip cookies, the first thing that Dad really seemed enthusiastic about all day. “Smells good,” he said. I guess he's on the mend.
4/24/10 Part I
4/24/10 Part 1
This week we fell down the rabbit hole. My brain is still spinning from it all, but this is no way to start a story.
Thursday, I was having a good day. Court was mercifully fast, it was a beautiful day, I went to an appointment at SAGE, also very fast, and found myself with a rare few hours of spare time. I headed towards Dad's house, and stopped to buy him a couple new cds, because we're all going crazy listening to the same ones over and over. I went into Whole Foods, even though I hate the frenetic energy in there, and wandered around, picking out treats for Dad.
I showed up at Dad's apartment around 1pm, and everything went to hell. Marie told me that Dad had woken up unable to stand, let alone walk. In fact, even sitting up made him scream from pain. At first we thought it was his hips, but then narrowed it down to his lower back. Together, we were able to haul him to the bathroom by lifting him so he could sit on his wheeled walker.
I was freaking out but I had to figure out what to do. I didn't want to take him to the hospital if it was going to turn out to be nothing, like the arm issue, but I didn't want to not take him if it was medically necessary. I tried calling his primary doctor, but wasn't able to connect with him, so I emailed my high school friend, Ethan, who is now an ER doctor, who called back and told me that acute lower back pain is considered a medical emergency, and that he could be suffering from a compression fracture of his spine or worse, cancer in the bones. Ethan talked me through the process of calling a private ambulance, and advised me to take Dad to the ER early in the morning, when they're least busy.
I left Dad's house around 11pm to go home, take my meds, and feed my cats, leaving JD in charge of Dad. When I finally fell asleep around 1am, I dreamed that Dad and I were in an ambulance driving through heavy gunfire coming from all directions. In the dream, I was shielding Dad with my body while bullets were zinging all around us.
I got up at 5am and arrived at Dad's around 6pm to find him sleeping and JD incoherent with exhaustion. I couldn't bear to wake him, so I curled up on one end of the couch and JD curled up on the other and we both slept until Dad woke up at 7am. We got ourselves together and dressed Dad, and then I called the private ambulance company, but they didn't have any units available, so we had to call 911.
Two EMTs arrived, a smaller black woman, who was really nice, and a big white guy, who was a total asshole. After they assessed Dad and strapped him into the chair, they carried Dad down the stairs, with the white guy leaving the woman at the bottom to bear all the weight. Of course, they refused my request to take Dad to Mt. Sinai, where his doctor practices, because it's not the closest hospital, so we wound up at the Roosevelt ER.
Ethan's tip about the ER early in the morning was right – the ER was practically empty, and the doctor saw us immediately. He did an ultrasound of Dad's abdomen, and then called in his supervisor, and they both huddled around the screen, clearly puzzled. They decided to send him for a ct scan, both to clarify what they were seeing and to check out his spine. I had to sit in a waiting room while they took Dad away to do the scan and I waited and waited but they didn't return him to me. Finally, I heard a familiar voice shouting “How long do I have to wait here?!” I went to investigate and found him abandoned on a stretcher in the hallway. Thank goodness he can shout!
Luckily, the diagnosis turned out to be pretty simple, just severe osteoarthritis in his spine, the same thing he has in his knees. The doctor offered me a choice: they could admit him to the hospital for a few days until he could be placed in a rehab facility, or we could just bring him home, “if you can handle it.” It was a heart-wrenching moment, but the decision was pretty easy, since the first plan seemed like one from which he might never make it home, and I feel pretty strongly that if he's going to be in an institution, it has to be one that I pick. I asked the doctor if he could order a physical therapist to come to Dad's house, but apparently they can't do that from the ER – I had to get Dad's primary care doctor to do that. So, they sent us home with orders to give Dad 600 mg of Tylenol every 6 hours. On the way out, I stole an unused plastic urinal. I figured we were going to need it – we had gotten through the previous day by having Dad pee in an old, battered pot, but it was a very makeshift process.
The trip home was rough. They had sent two women paramedics, both friendly and competent, but clearly daunted by the idea of lifting Dad up all these stairs. They were really struggling, stopping at every landing to catch their breath and switch places, but they did it, and did it without any negativity. Dad, by that point, had had it. He hadn't eaten much, and was tired and in pain, and when they immobilized him in a sheet and then used four straps to secure him to the chair, he didn't understand what was going and freaked out. All the way up the stairs, he was screaming and yelling and demanding to be let out, and my verbal encouragement didn't get very far. Marie heard the fuss when we were still downstairs and was waiting with the door open for us. The paramedics were so winded that they had to sit down and have some water. I thanked them for the heroic job and tipped them $20.
The next hurdle came when Dad started saying he had to shit. The bathroom is close to his bedroom, about 4 feet down the hall, but when you can't stand, you can't walk. Dad tried to stand a couple times, but that caused so much pain that he wound up screaming. Finally, Marie maneuvered him onto the seat on his walker, which has wheels, and between the two of us, we were able to haul him down the hall to the bathroom door. Unfortunately, the bathroom has a step up, and the doorway is too narrow for the walker to fit even if we lifted it over. There's no option but to lift him out of the seat and lug him to the toilet. After all that effort Dad didn't go. Eventually, the pain of sitting up was too much and we had to take him back to bed.
This was a set up for the disaster later. I won't go into details, but suffice it to say I failed the ultimate caregivers' test: cleaning up shit. It wasn't that much, just some seepage, and I tried, but it was right after dinner and my medications make me queasy anyway, and I wound up vomiting up my guts. Luckily, Kate S. had seen the look on my face and ran for a plastic bag, and then finished the job while I was getting familiar with the inside of the toilet. Clearly we had to get Dad to the bathroom again. Kate S. tried and failed to get him onto the walker seat, but with a determination based in desperation, I heaved him on and then lifted him off and onto the toilet. I have always had strong arms and a strong back from pottery and swimming and lifting my notoriously heavy green backpack, but I had no idea I could lift Dad.
The thing about this process is that just when you reach a comfort level with one stage, you get jolted into a whole new situation. This situation is intensely physical, between the urinal and the lifting and the feeding (to sit up, Dad needs to support himself with both hands). It also requires a lot of supplies – we made a list: baby wipes, tylenol, heating bad, icy hot patches, a commode, absorbent bed pads – and Brianna took my card and headed to the neighborhood pharmacy.
I am so grateful for my queer family – at various points yesterday, JD, Kate S., Brianna, Jaelynn, and Jaelynn's girlfriend Suzy were all here, helping out. JD, Jaelynn, and Suzy spent the night with Dad, so I could go home and get some much-needed sleep. Between getting up at 5am, the lifting, the crying, and the vomiting, I was totally wiped out.
This week we fell down the rabbit hole. My brain is still spinning from it all, but this is no way to start a story.
Thursday, I was having a good day. Court was mercifully fast, it was a beautiful day, I went to an appointment at SAGE, also very fast, and found myself with a rare few hours of spare time. I headed towards Dad's house, and stopped to buy him a couple new cds, because we're all going crazy listening to the same ones over and over. I went into Whole Foods, even though I hate the frenetic energy in there, and wandered around, picking out treats for Dad.
I showed up at Dad's apartment around 1pm, and everything went to hell. Marie told me that Dad had woken up unable to stand, let alone walk. In fact, even sitting up made him scream from pain. At first we thought it was his hips, but then narrowed it down to his lower back. Together, we were able to haul him to the bathroom by lifting him so he could sit on his wheeled walker.
I was freaking out but I had to figure out what to do. I didn't want to take him to the hospital if it was going to turn out to be nothing, like the arm issue, but I didn't want to not take him if it was medically necessary. I tried calling his primary doctor, but wasn't able to connect with him, so I emailed my high school friend, Ethan, who is now an ER doctor, who called back and told me that acute lower back pain is considered a medical emergency, and that he could be suffering from a compression fracture of his spine or worse, cancer in the bones. Ethan talked me through the process of calling a private ambulance, and advised me to take Dad to the ER early in the morning, when they're least busy.
I left Dad's house around 11pm to go home, take my meds, and feed my cats, leaving JD in charge of Dad. When I finally fell asleep around 1am, I dreamed that Dad and I were in an ambulance driving through heavy gunfire coming from all directions. In the dream, I was shielding Dad with my body while bullets were zinging all around us.
I got up at 5am and arrived at Dad's around 6pm to find him sleeping and JD incoherent with exhaustion. I couldn't bear to wake him, so I curled up on one end of the couch and JD curled up on the other and we both slept until Dad woke up at 7am. We got ourselves together and dressed Dad, and then I called the private ambulance company, but they didn't have any units available, so we had to call 911.
Two EMTs arrived, a smaller black woman, who was really nice, and a big white guy, who was a total asshole. After they assessed Dad and strapped him into the chair, they carried Dad down the stairs, with the white guy leaving the woman at the bottom to bear all the weight. Of course, they refused my request to take Dad to Mt. Sinai, where his doctor practices, because it's not the closest hospital, so we wound up at the Roosevelt ER.
Ethan's tip about the ER early in the morning was right – the ER was practically empty, and the doctor saw us immediately. He did an ultrasound of Dad's abdomen, and then called in his supervisor, and they both huddled around the screen, clearly puzzled. They decided to send him for a ct scan, both to clarify what they were seeing and to check out his spine. I had to sit in a waiting room while they took Dad away to do the scan and I waited and waited but they didn't return him to me. Finally, I heard a familiar voice shouting “How long do I have to wait here?!” I went to investigate and found him abandoned on a stretcher in the hallway. Thank goodness he can shout!
Luckily, the diagnosis turned out to be pretty simple, just severe osteoarthritis in his spine, the same thing he has in his knees. The doctor offered me a choice: they could admit him to the hospital for a few days until he could be placed in a rehab facility, or we could just bring him home, “if you can handle it.” It was a heart-wrenching moment, but the decision was pretty easy, since the first plan seemed like one from which he might never make it home, and I feel pretty strongly that if he's going to be in an institution, it has to be one that I pick. I asked the doctor if he could order a physical therapist to come to Dad's house, but apparently they can't do that from the ER – I had to get Dad's primary care doctor to do that. So, they sent us home with orders to give Dad 600 mg of Tylenol every 6 hours. On the way out, I stole an unused plastic urinal. I figured we were going to need it – we had gotten through the previous day by having Dad pee in an old, battered pot, but it was a very makeshift process.
The trip home was rough. They had sent two women paramedics, both friendly and competent, but clearly daunted by the idea of lifting Dad up all these stairs. They were really struggling, stopping at every landing to catch their breath and switch places, but they did it, and did it without any negativity. Dad, by that point, had had it. He hadn't eaten much, and was tired and in pain, and when they immobilized him in a sheet and then used four straps to secure him to the chair, he didn't understand what was going and freaked out. All the way up the stairs, he was screaming and yelling and demanding to be let out, and my verbal encouragement didn't get very far. Marie heard the fuss when we were still downstairs and was waiting with the door open for us. The paramedics were so winded that they had to sit down and have some water. I thanked them for the heroic job and tipped them $20.
The next hurdle came when Dad started saying he had to shit. The bathroom is close to his bedroom, about 4 feet down the hall, but when you can't stand, you can't walk. Dad tried to stand a couple times, but that caused so much pain that he wound up screaming. Finally, Marie maneuvered him onto the seat on his walker, which has wheels, and between the two of us, we were able to haul him down the hall to the bathroom door. Unfortunately, the bathroom has a step up, and the doorway is too narrow for the walker to fit even if we lifted it over. There's no option but to lift him out of the seat and lug him to the toilet. After all that effort Dad didn't go. Eventually, the pain of sitting up was too much and we had to take him back to bed.
This was a set up for the disaster later. I won't go into details, but suffice it to say I failed the ultimate caregivers' test: cleaning up shit. It wasn't that much, just some seepage, and I tried, but it was right after dinner and my medications make me queasy anyway, and I wound up vomiting up my guts. Luckily, Kate S. had seen the look on my face and ran for a plastic bag, and then finished the job while I was getting familiar with the inside of the toilet. Clearly we had to get Dad to the bathroom again. Kate S. tried and failed to get him onto the walker seat, but with a determination based in desperation, I heaved him on and then lifted him off and onto the toilet. I have always had strong arms and a strong back from pottery and swimming and lifting my notoriously heavy green backpack, but I had no idea I could lift Dad.
The thing about this process is that just when you reach a comfort level with one stage, you get jolted into a whole new situation. This situation is intensely physical, between the urinal and the lifting and the feeding (to sit up, Dad needs to support himself with both hands). It also requires a lot of supplies – we made a list: baby wipes, tylenol, heating bad, icy hot patches, a commode, absorbent bed pads – and Brianna took my card and headed to the neighborhood pharmacy.
I am so grateful for my queer family – at various points yesterday, JD, Kate S., Brianna, Jaelynn, and Jaelynn's girlfriend Suzy were all here, helping out. JD, Jaelynn, and Suzy spent the night with Dad, so I could go home and get some much-needed sleep. Between getting up at 5am, the lifting, the crying, and the vomiting, I was totally wiped out.
Friday, April 9, 2010
4/9/10
4/9/10
This week Dad has taken to making serious-sounding, but hard-to-interpret pronouncements. On Wednesday, he told Kate S. “I suppose, if everyone were satisfied, there wouldn't be much Italian at all, just music, music, music.” He also said, “I hope no one in my port is sinking.”
This morning Dad told Jaelynn “Stop pushing fruit on me, I am forbidden.”
Last night she and I took Dad to the opening of “Flowers of Peter Heinemann” at the Schlesinger gallery. The event itself was uncomfortable in several ways – it was very crowded and noisy, which was difficult for Dad with his hearing aid, and it was very hot, so Jaelynn and I were sweating with our long hair. There was, at least, an elevator, which was tiny, clearly made for one person, but it was the kind that has a gate you have to open from inside and Dad would never have been able to get out, so Jaelynn crammed in there with him, like a clown car. The paintings themselves, of flowers and the occasional cat, were gorgeous, but you could hardly see them with all the people in the way, and, of course, Dad couldn't see them at all. But our presence there was symbolic. As Peter pointed out, when he made his way through the crowd to us, he and Dad will have been friends for 60 years this year, and Dad has never missed one of his shows. On top of that, Peter and his wife, Marie, have stayed in touch despite his illness while others, like Inga and Mia, shy away.
On Tuesday I met with Michelle, the social worker in charge of the caregivers' program at SAGE. It got pretty emotional. I found myself saying to her that all I want is for Dad to never feel afraid or alone. She pointed out to me how unrealistic a standard that is, but I've always set the bar for myself very high, and this is arguably one of the most important things I've ever done. Her focus was on what's become of my life – and it's true that I've given up a lot, everything from working full-time to monday night ACT UP meetings to swimming to friends who don't get that if they want to see me, they have to come hang out here. In some ways, I kind of feel like my life is in a state of suspended animation, on hold until this is over, even though the end is nowhere in sight. I kind of cram what I can in around the ages, but the focal point is the 42 or so hours I spend with Dad each week. She pointed out that, though I tend to think of my caregiving as having started with his Alzheimer's diagnosis, it actually began with my mother's death, when I inherited the tasks she had done for him, like balancing his checkbook. It's been 11 years since my mother died.
This week Dad has taken to making serious-sounding, but hard-to-interpret pronouncements. On Wednesday, he told Kate S. “I suppose, if everyone were satisfied, there wouldn't be much Italian at all, just music, music, music.” He also said, “I hope no one in my port is sinking.”
This morning Dad told Jaelynn “Stop pushing fruit on me, I am forbidden.”
Last night she and I took Dad to the opening of “Flowers of Peter Heinemann” at the Schlesinger gallery. The event itself was uncomfortable in several ways – it was very crowded and noisy, which was difficult for Dad with his hearing aid, and it was very hot, so Jaelynn and I were sweating with our long hair. There was, at least, an elevator, which was tiny, clearly made for one person, but it was the kind that has a gate you have to open from inside and Dad would never have been able to get out, so Jaelynn crammed in there with him, like a clown car. The paintings themselves, of flowers and the occasional cat, were gorgeous, but you could hardly see them with all the people in the way, and, of course, Dad couldn't see them at all. But our presence there was symbolic. As Peter pointed out, when he made his way through the crowd to us, he and Dad will have been friends for 60 years this year, and Dad has never missed one of his shows. On top of that, Peter and his wife, Marie, have stayed in touch despite his illness while others, like Inga and Mia, shy away.
On Tuesday I met with Michelle, the social worker in charge of the caregivers' program at SAGE. It got pretty emotional. I found myself saying to her that all I want is for Dad to never feel afraid or alone. She pointed out to me how unrealistic a standard that is, but I've always set the bar for myself very high, and this is arguably one of the most important things I've ever done. Her focus was on what's become of my life – and it's true that I've given up a lot, everything from working full-time to monday night ACT UP meetings to swimming to friends who don't get that if they want to see me, they have to come hang out here. In some ways, I kind of feel like my life is in a state of suspended animation, on hold until this is over, even though the end is nowhere in sight. I kind of cram what I can in around the ages, but the focal point is the 42 or so hours I spend with Dad each week. She pointed out that, though I tend to think of my caregiving as having started with his Alzheimer's diagnosis, it actually began with my mother's death, when I inherited the tasks she had done for him, like balancing his checkbook. It's been 11 years since my mother died.
Saturday, April 3, 2010
4/3/10
Jaelynn is leading Dad down the hall, walking backwards with both his hands in hers, the fastest way to get someplace with him. I hear him say, “you have big, big, big, big . . .” “That's my chest, Dad,” she tells him, relocating his hands. I thank the universe for her good-natured spirit.
“Do we have any sticks and stones?” Dad asks, shuffling out of the bathroom. I have no idea what he means, so I focus on the most obvious issue. “Do you need pants, Dad?” I ask. He's naked from the waist down. “Yes, I need pants,” he says agreeably, “but I also need the stones.”
I heat up the lunch Jaelynn has left for Dad and present it to him. “This is new,” he says, in the thoughtful tone of a food critic sampling an exotic cuisine. “All these are long, stringy things, and they don't break.” “Spaghetti, Dad,” I tell him. “It's called spaghetti.”
I have decided that it's time to be proactive about Dad's finances – waiting for my lawyer friend to do the power of attorney is just courting disaster, particularly since Dad and I aren't biologically related, and that will complicate things in terms of my legal rights. I think that probably the best bet is to transfer his assets into my name now, so that he can start earning time towards medicaid eligibility, since, at this rate, I won't be able to pay for his care indefinitely. I need someone who specializes in elder law to help me sort this stuff out, so I contacted SAGE, the organization that provides services for elders in the LGBT community. They have a lawyer, but to use that service, they want me to sign up for their caregivers' program, so I'm going for an intake on tuesday.
I have mixed feelings about becoming a “client” - I suppose that's true for any helping professional since it's a real reversal of the role that we are used to. It felt weird being spoken to in a “social worky” voice – the lady on the phone was being so gentle and soothing that I felt like she was talking to a frightened deer. Reservations aside, I must admit that I could use some help – when she said that one of the things they do is help caregivers plan for five years from now, I found my eyes tearing up at the idea of five years – it seems like such an impossible, overwhelming length of time in a situation where we're just getting from day to day.
“Do we have any sticks and stones?” Dad asks, shuffling out of the bathroom. I have no idea what he means, so I focus on the most obvious issue. “Do you need pants, Dad?” I ask. He's naked from the waist down. “Yes, I need pants,” he says agreeably, “but I also need the stones.”
I heat up the lunch Jaelynn has left for Dad and present it to him. “This is new,” he says, in the thoughtful tone of a food critic sampling an exotic cuisine. “All these are long, stringy things, and they don't break.” “Spaghetti, Dad,” I tell him. “It's called spaghetti.”
I have decided that it's time to be proactive about Dad's finances – waiting for my lawyer friend to do the power of attorney is just courting disaster, particularly since Dad and I aren't biologically related, and that will complicate things in terms of my legal rights. I think that probably the best bet is to transfer his assets into my name now, so that he can start earning time towards medicaid eligibility, since, at this rate, I won't be able to pay for his care indefinitely. I need someone who specializes in elder law to help me sort this stuff out, so I contacted SAGE, the organization that provides services for elders in the LGBT community. They have a lawyer, but to use that service, they want me to sign up for their caregivers' program, so I'm going for an intake on tuesday.
I have mixed feelings about becoming a “client” - I suppose that's true for any helping professional since it's a real reversal of the role that we are used to. It felt weird being spoken to in a “social worky” voice – the lady on the phone was being so gentle and soothing that I felt like she was talking to a frightened deer. Reservations aside, I must admit that I could use some help – when she said that one of the things they do is help caregivers plan for five years from now, I found my eyes tearing up at the idea of five years – it seems like such an impossible, overwhelming length of time in a situation where we're just getting from day to day.
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