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.
Monday, May 10, 2010
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.
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.
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.”
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).
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.
Tuesday, March 30, 2010
3/29/10
Sitting in the waiting room, waiting to get his new hearing aid, Dad asks “why are we here?” “To see the ear doctor, Dad,” I explain for the 43rd time. “I never noticed that you needed to see an ear doctor,” he responds, much to the amusement of the other people waiting.
When we got home with the hearing aid, Dad was full of questions. “What is all that running water?” Dad asked. “It's raining, Dad, and that's the sound of cars going over wet streets,” I explain. He's amazed and I'm thrilled – the hearing aid really works! He even heard the creaky floorboards between his bathroom and bedroom. Of course, now we're going to have a lot of “What the hell is that?!” while he gets used to all the “new” sounds.
A couple of days later, Dad is still having trouble differentiating wet sounds. “Is it raining?” he asks. “No, Dad, that's someone in the bathroom, peeing!” I explain, trying not to laugh.
In an effort to get Dad back to a normal schedule, Jaelynn has tied his bedroom curtains back so that in the morning, he can feel the sun on his face. It seems to be working – lately he's been up and demanding breakfast at 6am – but it had an unintended consequence; the other night Jaelynn was putting Dad to bed, sitting with him in his darkened bedroom. She looked out the window, and observed one of Dad's neighbors, a man in the building behind his, performing a Britney Spears dance, stark naked. Dad, sensing that her attention had wandered, asked, “what are you looking at?” “This man is naked,” she explained. “Bacon?” asked Dad, who has to take his hearing aid out at bedtime. “No, naked!” yelled Jaelynn.
When we got home with the hearing aid, Dad was full of questions. “What is all that running water?” Dad asked. “It's raining, Dad, and that's the sound of cars going over wet streets,” I explain. He's amazed and I'm thrilled – the hearing aid really works! He even heard the creaky floorboards between his bathroom and bedroom. Of course, now we're going to have a lot of “What the hell is that?!” while he gets used to all the “new” sounds.
A couple of days later, Dad is still having trouble differentiating wet sounds. “Is it raining?” he asks. “No, Dad, that's someone in the bathroom, peeing!” I explain, trying not to laugh.
In an effort to get Dad back to a normal schedule, Jaelynn has tied his bedroom curtains back so that in the morning, he can feel the sun on his face. It seems to be working – lately he's been up and demanding breakfast at 6am – but it had an unintended consequence; the other night Jaelynn was putting Dad to bed, sitting with him in his darkened bedroom. She looked out the window, and observed one of Dad's neighbors, a man in the building behind his, performing a Britney Spears dance, stark naked. Dad, sensing that her attention had wandered, asked, “what are you looking at?” “This man is naked,” she explained. “Bacon?” asked Dad, who has to take his hearing aid out at bedtime. “No, naked!” yelled Jaelynn.
Saturday, March 20, 2010
3/20/10
3/20/10
3:30am I am wakened from a fitful sleep on Dad's couch by a roar – a wordless shout of pure feeling, of panic and pain and anger. “Dad!” I yell, searching for my glasses on the floor, “what's wrong?” “I woke up blind.” I find him in the bathroom, agitated. “What will I do now?” he asks. A tough question at any time, never mind 3:30am. “You'll feel things, with your hands, to find out where they are,” I tell him. “One trip downstairs will kill me,” he says. “You won't go downstairs alone. Somebody will help you.” “I'll have to go to the . . . .to the” he gets stuck, but I know he means the nursing home, which he usually calls “that place.” “You're not going anywhere, you're staying right here, at home, with people to help you all the time, like me, now.” He seems reassured. I lead him back to bed.
On thursday evening, I was on my way home from Dad's house, lost in thought on the subway, when a woman who was clearly still celebrating St. Patrick's day a day later started talking to me. She wound up telling me about her father-in-law, who is 82 and has Alzheimer's. Having owned a bar and first met her there, he still remembers her drink of choice - “Chardonnay!” he exclaims whenever he sees her and starts trying to serve her some, even if it's 8am.
An unexpected responsibility: now that I'm running Dad's life, I'm also in charge of his cigars. I can tell that something's not right – the cigars are too dry and prone to crumbling when I snip off the end. He keeps them in an ancient humidor, a big mahogany box with cedar inside, but there's also a piece of metal in there, and I vaguely remember him moistening it somehow, but I'm really not sure how much water to add or where it goes. I tried looking for information on line, but the articles seem to refer to more modern humidors that have some kind of gel in them, or they assume you know what the parts are called. I need a cigar expert!
3:30am I am wakened from a fitful sleep on Dad's couch by a roar – a wordless shout of pure feeling, of panic and pain and anger. “Dad!” I yell, searching for my glasses on the floor, “what's wrong?” “I woke up blind.” I find him in the bathroom, agitated. “What will I do now?” he asks. A tough question at any time, never mind 3:30am. “You'll feel things, with your hands, to find out where they are,” I tell him. “One trip downstairs will kill me,” he says. “You won't go downstairs alone. Somebody will help you.” “I'll have to go to the . . . .to the” he gets stuck, but I know he means the nursing home, which he usually calls “that place.” “You're not going anywhere, you're staying right here, at home, with people to help you all the time, like me, now.” He seems reassured. I lead him back to bed.
On thursday evening, I was on my way home from Dad's house, lost in thought on the subway, when a woman who was clearly still celebrating St. Patrick's day a day later started talking to me. She wound up telling me about her father-in-law, who is 82 and has Alzheimer's. Having owned a bar and first met her there, he still remembers her drink of choice - “Chardonnay!” he exclaims whenever he sees her and starts trying to serve her some, even if it's 8am.
An unexpected responsibility: now that I'm running Dad's life, I'm also in charge of his cigars. I can tell that something's not right – the cigars are too dry and prone to crumbling when I snip off the end. He keeps them in an ancient humidor, a big mahogany box with cedar inside, but there's also a piece of metal in there, and I vaguely remember him moistening it somehow, but I'm really not sure how much water to add or where it goes. I tried looking for information on line, but the articles seem to refer to more modern humidors that have some kind of gel in them, or they assume you know what the parts are called. I need a cigar expert!
Thursday, March 18, 2010
3/18/10
3/18/10
It's been a busy week for Dad and Jaelynn, who have been navigating their way to various appointments by themselves while I've been busy with my own medical bullshit. On tuesday, they headed to the Quest lab for Dad's urine culture, and to the foot doctor. In the elevator, Dad was doing his usual blind groping to find out about his surroundings – unfortunately, he was feeling the Fed Ex guy's ass. Luckily, the guy was cool about it. At the lab, Dad startled the “audience” of waiting people by asking JaeLynn, loudly, if he could fuck her. “Dad! We're in the doctor's office!” she told him, but he was not deterred.
Jaelynn has become the latest target of Dad's affections – he asks her to get naked or to have sex with him at least once a day. The other day, he patted her and said, “you're a little plump, aren't you?” She takes it in stride and just laughs about the situation.
The other day Dad asked Jaelynn what she was doing. “I'm painting my toenails, Dad,” she said. “Can you do mine?” asked Dad. “No, only women – and some transwomen – and some gay men paint their nails,” she said. “Do mine,” Dad insisted, removing his shoe. Dad now has a layer of shiny, clear polish.
Today they went for Dad's follow up appointment at the Urologist. The inefection has cleared up, but the doctor did a sonogram and showed JaeLynn how much urine Dad is retaining. He told her that if the situation does not improve by the next visit, Dad may have to have surgery. I wish I had been there to get more details, but I was being x-rayed so much that I probably glow in the dark now.
We've been making a general effort to keep Dad busy – now that the weather's nice, Jaelynn sits with him outside, she's got him doing his leg exercises again, and today we had him playing with a shape sorter, feeling the blocks and the holes to figure out where to put them. The increased activity has definitely helped – he's sleeping through the night a lot more now, more likely to wake up in the morning, walking better, and overall in a better mood.
It's been a busy week for Dad and Jaelynn, who have been navigating their way to various appointments by themselves while I've been busy with my own medical bullshit. On tuesday, they headed to the Quest lab for Dad's urine culture, and to the foot doctor. In the elevator, Dad was doing his usual blind groping to find out about his surroundings – unfortunately, he was feeling the Fed Ex guy's ass. Luckily, the guy was cool about it. At the lab, Dad startled the “audience” of waiting people by asking JaeLynn, loudly, if he could fuck her. “Dad! We're in the doctor's office!” she told him, but he was not deterred.
Jaelynn has become the latest target of Dad's affections – he asks her to get naked or to have sex with him at least once a day. The other day, he patted her and said, “you're a little plump, aren't you?” She takes it in stride and just laughs about the situation.
The other day Dad asked Jaelynn what she was doing. “I'm painting my toenails, Dad,” she said. “Can you do mine?” asked Dad. “No, only women – and some transwomen – and some gay men paint their nails,” she said. “Do mine,” Dad insisted, removing his shoe. Dad now has a layer of shiny, clear polish.
Today they went for Dad's follow up appointment at the Urologist. The inefection has cleared up, but the doctor did a sonogram and showed JaeLynn how much urine Dad is retaining. He told her that if the situation does not improve by the next visit, Dad may have to have surgery. I wish I had been there to get more details, but I was being x-rayed so much that I probably glow in the dark now.
We've been making a general effort to keep Dad busy – now that the weather's nice, Jaelynn sits with him outside, she's got him doing his leg exercises again, and today we had him playing with a shape sorter, feeling the blocks and the holes to figure out where to put them. The increased activity has definitely helped – he's sleeping through the night a lot more now, more likely to wake up in the morning, walking better, and overall in a better mood.
Tuesday, March 9, 2010
3/9/10
3/9/10
Jaelynn and I took Dad to the ear doctor on friday. The appointment was in the afternoon, but Dad was asleep, and he was pissed about being woken up and dragged out of the house. All the way down the stairs and in the cab, he kept complaining “This is stupid! This is insane!” Finally, I realized that he thought it was the middle of the night rather than mid-afternoon. I left JaeLynn and Dad sitting in the waiting room while I filled out various forms, and when I turned back to them, Dad had taken Jaelynn's glasses and was wearing them himself! It was pretty funny.
In the exam room, the doctor quickly caught on that you have to address Dad LOUDLY, and he used his best loud voice to ask him how long he'd been having trouble hearing. “I don't have any trouble hearing,” said Dad, looking confused. At that point, the doctor decided to address his questions to me. After he examined Dad, he sent us down the hall to the audiologist. I had some doubts about whether Dad would be able to remember the instructions well enough to complete the hearing tests, but he did pretty well, and they were able to determine that he is pretty much completely deaf in his right ear (which we knew) and fairly deaf in his left ear (which was a surprise). I feel pretty bad that I let him get this deaf without bringing him to the doctor, but it's hard to figure out what part of his misunderstandings is his brain and what part is his ears. I'm looking forward to seeing how he does with his new, very expensive, hearing aid – it's supposed to be ready on the 22nd.
Saturday night, two of my now-grown former youth dropped by – one of them is a real estate agent who is showing a storefront near Dad's house. JD was there to spend the night with Dad, and he had brought along his girlfriend, Sam, so it was a full house and Dad, my party animal, seemed to be enjoying it. At one point, he asked how many people were there. “Five – plus you!” JD told him. “Fuck you?” he asked, causing everyone to laugh. Sam and I, who both saw the mischievous look on his face, are convinced that his remark was not a misunderstanding, but Dad having a little fun.
Last night started out to be a boring, gloomy evening – Dad headed to bed as soon as I arrived, and Marie said that she thought maybe we should start him on Ensure since he's not eating as much because he's always asleep. Luckily Brianna was feeling antsy at home, and decided to come visit us. I lured Dad out of bed with the promise of lemon sorbet, and he sat on the couch gloomily. “I feel really bad,” he said. “I feel ancient.”
Brianna had brought play-doh, thinking that maybe Dad's sleepiness is just boredom. I handed Dad a piece of play-doh, which he inspected, but didn't seem to know what to do with. “Can you make a ball?” I asked him. He couldn't figure it out, so I took it, made a rough ball, and gave it back to him. “I'm making it smooth,” he said turning it around and around in his hands. Once he had perfected the ball, I took it from him, and made something else. “It's a snake,” I said giving it back to him. He felt it carefully; “here's the head,” he said, before giving it back. Next I made two balls and handed them to him, “there are two now,” he said. Then the two became four, which Dad carefully counted. When we got to eight, he said, “I'm not going to drop any,” cupping them all precariously in one hand. I took another piece of play-doh and made a bowl, which I balanced in his other hand. Gingerly, he placed all eight balls in the bowl. We played with the play-doh for forty minutes, which is a really long time for someone with Dad's attention span.
Jaelynn and I took Dad to the ear doctor on friday. The appointment was in the afternoon, but Dad was asleep, and he was pissed about being woken up and dragged out of the house. All the way down the stairs and in the cab, he kept complaining “This is stupid! This is insane!” Finally, I realized that he thought it was the middle of the night rather than mid-afternoon. I left JaeLynn and Dad sitting in the waiting room while I filled out various forms, and when I turned back to them, Dad had taken Jaelynn's glasses and was wearing them himself! It was pretty funny.
In the exam room, the doctor quickly caught on that you have to address Dad LOUDLY, and he used his best loud voice to ask him how long he'd been having trouble hearing. “I don't have any trouble hearing,” said Dad, looking confused. At that point, the doctor decided to address his questions to me. After he examined Dad, he sent us down the hall to the audiologist. I had some doubts about whether Dad would be able to remember the instructions well enough to complete the hearing tests, but he did pretty well, and they were able to determine that he is pretty much completely deaf in his right ear (which we knew) and fairly deaf in his left ear (which was a surprise). I feel pretty bad that I let him get this deaf without bringing him to the doctor, but it's hard to figure out what part of his misunderstandings is his brain and what part is his ears. I'm looking forward to seeing how he does with his new, very expensive, hearing aid – it's supposed to be ready on the 22nd.
Saturday night, two of my now-grown former youth dropped by – one of them is a real estate agent who is showing a storefront near Dad's house. JD was there to spend the night with Dad, and he had brought along his girlfriend, Sam, so it was a full house and Dad, my party animal, seemed to be enjoying it. At one point, he asked how many people were there. “Five – plus you!” JD told him. “Fuck you?” he asked, causing everyone to laugh. Sam and I, who both saw the mischievous look on his face, are convinced that his remark was not a misunderstanding, but Dad having a little fun.
Last night started out to be a boring, gloomy evening – Dad headed to bed as soon as I arrived, and Marie said that she thought maybe we should start him on Ensure since he's not eating as much because he's always asleep. Luckily Brianna was feeling antsy at home, and decided to come visit us. I lured Dad out of bed with the promise of lemon sorbet, and he sat on the couch gloomily. “I feel really bad,” he said. “I feel ancient.”
Brianna had brought play-doh, thinking that maybe Dad's sleepiness is just boredom. I handed Dad a piece of play-doh, which he inspected, but didn't seem to know what to do with. “Can you make a ball?” I asked him. He couldn't figure it out, so I took it, made a rough ball, and gave it back to him. “I'm making it smooth,” he said turning it around and around in his hands. Once he had perfected the ball, I took it from him, and made something else. “It's a snake,” I said giving it back to him. He felt it carefully; “here's the head,” he said, before giving it back. Next I made two balls and handed them to him, “there are two now,” he said. Then the two became four, which Dad carefully counted. When we got to eight, he said, “I'm not going to drop any,” cupping them all precariously in one hand. I took another piece of play-doh and made a bowl, which I balanced in his other hand. Gingerly, he placed all eight balls in the bowl. We played with the play-doh for forty minutes, which is a really long time for someone with Dad's attention span.
Wednesday, March 3, 2010
3/3/10
3/3/10
We took Dad to the dentist yesterday. He was unhappy about going out and kept asking “is this necessary?” the whole way. When we got there, we shared an elevator with an older gay man, on his way to the same dentist, who kept chatting with Dad. When we got to the waiting room, apparently deciding that the waiting people were his audience, he announced, loudly “This is my favorite song!” and then sang a few bars of “Do-Do-Da-Do,” and ended with “etcetera, etcetera.” Everyone in the waiting room laughed. Then the gay man told Dad, “you are so lucky to have such a nice daughter caring for you.” Dad responded, indignantly, “I don't have a daughter!” Everyone, including the ladies behind the desk, froze, wondering what was going to happen next. I suppose they thought I might burst into tears or something, but I just told Dad, calmly, “I'm your daughter, right here!” and tapped him on the shoulder, at which point he said, “Oh, good!” and applauded.
Once they brought him into the dental office, the dentist pulled three of his front teeth on the bottom. It was hardly pulling, actually, he just kind of effortlessly plucked them out and sutured the hole. Aside from one “Shit!”, Dad didn't seem bothered by the process. We brought him home and he went straight to bed. We were all afraid that he would be in pain, but he woke up fine, though he was complaining to Jaelynn that someone stole his teeth.
Somehow the whole thing was harder for me than it was for him. It was like I couldn't stand losing any piece of dad, not even three rotten teeth, and all these feelings came rising up. I kept stuffing them down – couldn't cry in front of Dad, then JD showed up at my office having just been fired, then I had clients . . . finally, on the train on my way home, I opened a book, hid my face, and cried all the way home.
We took Dad to the dentist yesterday. He was unhappy about going out and kept asking “is this necessary?” the whole way. When we got there, we shared an elevator with an older gay man, on his way to the same dentist, who kept chatting with Dad. When we got to the waiting room, apparently deciding that the waiting people were his audience, he announced, loudly “This is my favorite song!” and then sang a few bars of “Do-Do-Da-Do,” and ended with “etcetera, etcetera.” Everyone in the waiting room laughed. Then the gay man told Dad, “you are so lucky to have such a nice daughter caring for you.” Dad responded, indignantly, “I don't have a daughter!” Everyone, including the ladies behind the desk, froze, wondering what was going to happen next. I suppose they thought I might burst into tears or something, but I just told Dad, calmly, “I'm your daughter, right here!” and tapped him on the shoulder, at which point he said, “Oh, good!” and applauded.
Once they brought him into the dental office, the dentist pulled three of his front teeth on the bottom. It was hardly pulling, actually, he just kind of effortlessly plucked them out and sutured the hole. Aside from one “Shit!”, Dad didn't seem bothered by the process. We brought him home and he went straight to bed. We were all afraid that he would be in pain, but he woke up fine, though he was complaining to Jaelynn that someone stole his teeth.
Somehow the whole thing was harder for me than it was for him. It was like I couldn't stand losing any piece of dad, not even three rotten teeth, and all these feelings came rising up. I kept stuffing them down – couldn't cry in front of Dad, then JD showed up at my office having just been fired, then I had clients . . . finally, on the train on my way home, I opened a book, hid my face, and cried all the way home.
Friday, February 26, 2010
2/26/10
2/26/10
“I was raised in a fish factory,” says Dad, when I tell him I have brought some fresh salmon fillets for his dinner. He's referring to the fact that his hometown, Gloucester, Mass., is one of the country's busiest fishing ports. When he was thrown out of World War II because of his fragile knees, he wound up cutting fish on the docks in Gloucester. He always used to tell the story of a co-worker who went to scratch his itching ear, forgetting the blade in his hand. The severed ear was retrieved, and rushed to the hospital, where it was reattached. He never forgot the importance of a sharp knife and kept the knives in his kitchen sharpened to a lethal edge.
We brought Dad to see his long-term internist, Dr. Hammer, on wednesday, trying to get to the bottom of his sore arm. Jaelynn got him up early to bathe and get dressed, and he was pretty irritated with the whole process. Dr. Hammer wasn't worried about the arm – he said it seemed like a tendon injury and that we should just let it heal as long as it doesn't get worse. He gave him a general inspection, and discovered a broken tooth, so we have a dentist in our future, along with a dermatologist, and an audiologist . . . for someone as healthy as he is, Dad sees a lot of doctors.
“I think I will despair if this cat dies before I do,” says Dad, reaching down to pet Kristen, who is hanging around his legs. It's definitely a situation I worry about, since she's about as old as he is, in cat years. I don't know if we could get away with substituting another cat, though I have a good candidate – Iris is a middle-aged, sweet tuxedo lady who would love to be an only cat. A couple days ago, Dad and Charlie were on the phone, and Charlie, who used to have much-beloved siamese cats of his own, said something, and Dad responded, “I don't have a pussy!” which sent Kate S. into spiels of laughter.
Today's another snow day for the public schools. “You used to love snow days,” I tell Dad, remembering how pissed he was when he missed a precious snow day because he was on sabbatical in Honduras. “I still do!” he replies, emphatically.
“I was raised in a fish factory,” says Dad, when I tell him I have brought some fresh salmon fillets for his dinner. He's referring to the fact that his hometown, Gloucester, Mass., is one of the country's busiest fishing ports. When he was thrown out of World War II because of his fragile knees, he wound up cutting fish on the docks in Gloucester. He always used to tell the story of a co-worker who went to scratch his itching ear, forgetting the blade in his hand. The severed ear was retrieved, and rushed to the hospital, where it was reattached. He never forgot the importance of a sharp knife and kept the knives in his kitchen sharpened to a lethal edge.
We brought Dad to see his long-term internist, Dr. Hammer, on wednesday, trying to get to the bottom of his sore arm. Jaelynn got him up early to bathe and get dressed, and he was pretty irritated with the whole process. Dr. Hammer wasn't worried about the arm – he said it seemed like a tendon injury and that we should just let it heal as long as it doesn't get worse. He gave him a general inspection, and discovered a broken tooth, so we have a dentist in our future, along with a dermatologist, and an audiologist . . . for someone as healthy as he is, Dad sees a lot of doctors.
“I think I will despair if this cat dies before I do,” says Dad, reaching down to pet Kristen, who is hanging around his legs. It's definitely a situation I worry about, since she's about as old as he is, in cat years. I don't know if we could get away with substituting another cat, though I have a good candidate – Iris is a middle-aged, sweet tuxedo lady who would love to be an only cat. A couple days ago, Dad and Charlie were on the phone, and Charlie, who used to have much-beloved siamese cats of his own, said something, and Dad responded, “I don't have a pussy!” which sent Kate S. into spiels of laughter.
Today's another snow day for the public schools. “You used to love snow days,” I tell Dad, remembering how pissed he was when he missed a precious snow day because he was on sabbatical in Honduras. “I still do!” he replies, emphatically.
Thursday, February 18, 2010
2/18/10
Anxiety Dream: Dad and Samantha are walking somewhere when he is hit by a car and killed. He keeps reincarnating in the form of various discombobulated people. Even though they bear no physical resemblance to him – some of them are women and some are various races – somehow I know that they are him and feel compelled to take care of them.
Dad has been having trouble with pain in his right arm since Friday. It's an on-and-off kind of pain that he describes as “Wham! And then nothing,” but it is so severe when it occurs that he screams in pain. Jaelynn went running into his room in panic several times tuesday night, and Kate S. was similarly freaked out when he screamed while getting up from the couch on wednesday. Since it wasn't getting better, she and I decided to take him to the ER for an x-ray yesterday, knowing that old bones are fragile. Dad complained all the way down the stairs, but when we got to the hospital he was pretty good, though in the waiting room he speculated that they were going to give him a dose of poison and kill him. It took a long time, but eventually the results came back – nothing broken – so we bundled Dad up in JaeLynn's coat over his own and brought him home.
Today Dad says, “I feel sort of snorty and bitchy. I don't feel good.” I wonder if he's catching a cold. Even though he's not feeling well, Dad's all hands tonight – I have to catch his hands and hold them to keep him from trying to feel my legs and breasts. Finally, my explanation about how daughters don't do that sinks in, and he backs off. “What should we do now?” he asks, apparently unable to think of anything else two people could possibly do. “Listen to music?” I suggest. He agrees and is shortly happily tapping away to his steel drums cd.
Dad has been having trouble with pain in his right arm since Friday. It's an on-and-off kind of pain that he describes as “Wham! And then nothing,” but it is so severe when it occurs that he screams in pain. Jaelynn went running into his room in panic several times tuesday night, and Kate S. was similarly freaked out when he screamed while getting up from the couch on wednesday. Since it wasn't getting better, she and I decided to take him to the ER for an x-ray yesterday, knowing that old bones are fragile. Dad complained all the way down the stairs, but when we got to the hospital he was pretty good, though in the waiting room he speculated that they were going to give him a dose of poison and kill him. It took a long time, but eventually the results came back – nothing broken – so we bundled Dad up in JaeLynn's coat over his own and brought him home.
Today Dad says, “I feel sort of snorty and bitchy. I don't feel good.” I wonder if he's catching a cold. Even though he's not feeling well, Dad's all hands tonight – I have to catch his hands and hold them to keep him from trying to feel my legs and breasts. Finally, my explanation about how daughters don't do that sinks in, and he backs off. “What should we do now?” he asks, apparently unable to think of anything else two people could possibly do. “Listen to music?” I suggest. He agrees and is shortly happily tapping away to his steel drums cd.
Monday, February 15, 2010
2/15/10
2/15/10
Today Dad seems to think we're shop-keepers. “Are you waiting for customers? When do they start coming in?” he asked me. When I explained that there wouldn't be any customers because today is President's Day, he said, “if anyone turns up, we say 'sorry, we're not in business today.'”
“My pants don't fit,” said Dad to Jaelynn last night. “I think I'm pregnant.”
Last week I accidentally gave Dad a stomach virus. Since I only vomited once, and I was on the train at the time, I figured it was an attack of motion sickness, and continued on my way to spend friday night with Dad. Saturday night, after Dad had gone to bed, Samantha heard a loud “Jesus Christ!” She ran to the bedroom to find Dad vomiting over the side of the bed. He was quite perplexed and kept asking her “why is this happening?” Luckily, he was better the next day.
Dad has a new nickname. It all started on Saturday, when I was on the phone with Kate S. “Dad's feeling perky,” I told her. “Did you say I feel like a turkey?” inquired Dad. “Not turkey, perky,” I said. Dad didn't get it. “PERKY, PERKY!!!” I yelled, but he still didn't get it. “Energetic!” “Energetic,” he repeated, and I thought he understood, but then he asked, “Quirky?” So now he's the Quirky Turkey.
Today Dad seems to think we're shop-keepers. “Are you waiting for customers? When do they start coming in?” he asked me. When I explained that there wouldn't be any customers because today is President's Day, he said, “if anyone turns up, we say 'sorry, we're not in business today.'”
“My pants don't fit,” said Dad to Jaelynn last night. “I think I'm pregnant.”
Last week I accidentally gave Dad a stomach virus. Since I only vomited once, and I was on the train at the time, I figured it was an attack of motion sickness, and continued on my way to spend friday night with Dad. Saturday night, after Dad had gone to bed, Samantha heard a loud “Jesus Christ!” She ran to the bedroom to find Dad vomiting over the side of the bed. He was quite perplexed and kept asking her “why is this happening?” Luckily, he was better the next day.
Dad has a new nickname. It all started on Saturday, when I was on the phone with Kate S. “Dad's feeling perky,” I told her. “Did you say I feel like a turkey?” inquired Dad. “Not turkey, perky,” I said. Dad didn't get it. “PERKY, PERKY!!!” I yelled, but he still didn't get it. “Energetic!” “Energetic,” he repeated, and I thought he understood, but then he asked, “Quirky?” So now he's the Quirky Turkey.
Saturday, January 30, 2010
January 30th, 2010
Dad is driving me crazy tonight. He's completely obsessed with his bed and the idea that someone's going to steal it. He keeps asking questions like “Somebody's going to come at 12 o'clock and push me out?” No matter how many times I reassure him, he can't shake the thought. “What about the guy that usually uses it?” he asks. When I tell him that he sleeps there every night, he won't believe me. When I ask him where he thinks he's been sleeping, he says “here and there.” So far, we've been to check on his bed three times, feeling it thoroughly to make sure there aren't any intruders. “Are you sure someone isn't there?” he keeps asking. “I'm always afraid that someone's going to come and say 'get out of there'!” “If every day, someone comes and gets into it, what do I do?” I'm running out of patience, and say, louder than I intend, “Dad! That's never happened and it never will.” It doesn't work. “What if the guy who sleeps here comes?” he asks again. I try a different approach. “He moved out.” I say, as confidently as I can. “Yesterday?” Dad asks. “Yes, he moved to Switzerland yesterday.” “I might as well use the bed, then,” says Dad.
On one of our bed-inspection trips, Dad decided he wanted an extra blanket, so I started rummaging in the closet. I found a blanket-bag, but it was labeled “1910-era bear skin lap robe”!!! I've never been good with dead animals so I just left the bag closed and shoved it back in the closet. The other blanket-bag contained a handmade patchwork quilt, made by a relative of Dad's who was injured while fighting the civil war and spent the rest of his life, unable to walk, making quilts. Given the quilt's age, I was afraid to actually put it on the bed, so I shoved that back, too. I think I'll just buy Dad a new blanket.
On one of our bed-inspection trips, Dad decided he wanted an extra blanket, so I started rummaging in the closet. I found a blanket-bag, but it was labeled “1910-era bear skin lap robe”!!! I've never been good with dead animals so I just left the bag closed and shoved it back in the closet. The other blanket-bag contained a handmade patchwork quilt, made by a relative of Dad's who was injured while fighting the civil war and spent the rest of his life, unable to walk, making quilts. Given the quilt's age, I was afraid to actually put it on the bed, so I shoved that back, too. I think I'll just buy Dad a new blanket.
Thursday, January 28, 2010
January 28, 2010
January 28, 2010
On Tuesday Dad was really together – when Kate S. complained to him about her new bifocals he told her she should just get two pairs of glasses, one for daily life and one for reading. She told him her insurance wouldn't cover it, and he asked “How much would it cost?” while reaching for his wallet.
The next day, though, he was back to being disoriented – he spent several hours asking me and Brianna the same questions over and over again. “Where do I go if I have to pee?” “Do I own this building?” “Are there two beds?” When the questions finally stopped, he kept chatting, but he was making less and less sense – at once point he just started repeating the word “fuck” over and over. He wasn't upset or raising his voice, he was saying it like any other word. We figured he was tired, but trying to get him to bed didn't work – he vehemently insisted that he wasn't tired, and when Brianna suggested he go lie down, he glared at her suspiciously and said, “I know why you want me to go to bed!” When we asked him why, he said “You want my seat!” At that point we gave up and let him stay up, figuring JayLynn would get him to bed later, but she couldn't do it either – he stayed up until 6am!!!
I thought he'd be totally wiped out today and expected to find him in bed, but he was awake when I got here, though yawning. Today's questions were all about Obama: “First black president?” “Yes, Dad,” “Very good.” “Many people object?” “Yes, Dad, some racist people do.” “Anybody try to shoot him?” “No, Dad.” “Must have lots of guards?” “Yes, Dad.” “First black president?” “Yes, Dad,” etc.
Then he went to the bathroom and came out with something entirely else on his mind: “How many billions of shits have been shat?” he wondered aloud. From there, he moved on to toilet paper - “I wonder how many rolls . . . it's a wonder there's any paper left in the world!” At that point, I decided that a distraction was in order, so I scooped up the cat and put her in his lap.
On Tuesday Dad was really together – when Kate S. complained to him about her new bifocals he told her she should just get two pairs of glasses, one for daily life and one for reading. She told him her insurance wouldn't cover it, and he asked “How much would it cost?” while reaching for his wallet.
The next day, though, he was back to being disoriented – he spent several hours asking me and Brianna the same questions over and over again. “Where do I go if I have to pee?” “Do I own this building?” “Are there two beds?” When the questions finally stopped, he kept chatting, but he was making less and less sense – at once point he just started repeating the word “fuck” over and over. He wasn't upset or raising his voice, he was saying it like any other word. We figured he was tired, but trying to get him to bed didn't work – he vehemently insisted that he wasn't tired, and when Brianna suggested he go lie down, he glared at her suspiciously and said, “I know why you want me to go to bed!” When we asked him why, he said “You want my seat!” At that point we gave up and let him stay up, figuring JayLynn would get him to bed later, but she couldn't do it either – he stayed up until 6am!!!
I thought he'd be totally wiped out today and expected to find him in bed, but he was awake when I got here, though yawning. Today's questions were all about Obama: “First black president?” “Yes, Dad,” “Very good.” “Many people object?” “Yes, Dad, some racist people do.” “Anybody try to shoot him?” “No, Dad.” “Must have lots of guards?” “Yes, Dad.” “First black president?” “Yes, Dad,” etc.
Then he went to the bathroom and came out with something entirely else on his mind: “How many billions of shits have been shat?” he wondered aloud. From there, he moved on to toilet paper - “I wonder how many rolls . . . it's a wonder there's any paper left in the world!” At that point, I decided that a distraction was in order, so I scooped up the cat and put her in his lap.
Monday, January 25, 2010
Jan. 25, 2010
1/25/10
Dad is wandering around the apartment feeling things, clearly looking for something. “Dad, what are you looking for?” I ask. “The man,” he says. “What man?” “The man who's singing.” “Dad, that's Pete Seeger and it's a record, he's not actually here.” “He was earlier,” insists Dad. “No, it's just you and me.” I explain.
“What are we going to do?” Dad asks, looking around. I wait for the inevitable – when Dad is trying to think of something to do, his mind always goes down the same track. “I know,” he says, “we were going to eat!” “We already ate, Dad,” I remind him. “We had dinner AND dessert.” “What about a, a, a . . . “ - he gets stuck a lot lately. “A snack?” I say, completing the sentence and bringing him a cookie.
Earlier today, Dad got freaked out. He had just gotten off the phone with Charlie, when he choked on his juice. Recovering from the choking, he noticed that he was blind. “What happened?” he wanted to know. “Something shattered, shattered, shattered,” he kept saying, getting more agitated until he got out of his seat and started randomly groping around the apartment. “I should jump in the river and drown,” he said, trying to open the closet doors. “I should get in bed and stay there until I die.” I managed to steer him out of the closet and back to the couch, and Kristen, his cat, sensing his distress, jumped into his lap. I put on some soothing pan flutes, and Kristen snuggled, and we managed to calm Dad down.
At least the urinary infection is over. I spoke to the doctor the other day and he says Dad's blood-work, including his blood counts and sugar, look “amazing for a man his age.”
Dad is wandering around the apartment feeling things, clearly looking for something. “Dad, what are you looking for?” I ask. “The man,” he says. “What man?” “The man who's singing.” “Dad, that's Pete Seeger and it's a record, he's not actually here.” “He was earlier,” insists Dad. “No, it's just you and me.” I explain.
“What are we going to do?” Dad asks, looking around. I wait for the inevitable – when Dad is trying to think of something to do, his mind always goes down the same track. “I know,” he says, “we were going to eat!” “We already ate, Dad,” I remind him. “We had dinner AND dessert.” “What about a, a, a . . . “ - he gets stuck a lot lately. “A snack?” I say, completing the sentence and bringing him a cookie.
Earlier today, Dad got freaked out. He had just gotten off the phone with Charlie, when he choked on his juice. Recovering from the choking, he noticed that he was blind. “What happened?” he wanted to know. “Something shattered, shattered, shattered,” he kept saying, getting more agitated until he got out of his seat and started randomly groping around the apartment. “I should jump in the river and drown,” he said, trying to open the closet doors. “I should get in bed and stay there until I die.” I managed to steer him out of the closet and back to the couch, and Kristen, his cat, sensing his distress, jumped into his lap. I put on some soothing pan flutes, and Kristen snuggled, and we managed to calm Dad down.
At least the urinary infection is over. I spoke to the doctor the other day and he says Dad's blood-work, including his blood counts and sugar, look “amazing for a man his age.”
Thursday, January 14, 2010
january 14th, 2010
January 14th, 2010
Yesterday, I gave Dad a bath. It's really nerve-wracking, navigating all those hard, slippery surfaces with someone with poor balance, even though we had assorted grab bars installed years ago. Like many people with Alzheimer's, Dad's become very resistant to bathing – Marie used to be able to get him to do it with reasonable frequency, but now he tells her that it's too cold or just says he doesn't feel like it. So far, I've had better luck – I've given him the last two baths he's had and haven't gotten any resistance, though he did tell me to make sure the bathroom was “tropical.”
Bathing Dad is a very hands-on process, which makes me have to overcome my natural hesitance about touch. As a child, I used to believe that people, especially my mother, were touch-telepaths and I was always afraid to rest my head against her for fear of thoughts leaking through the skin. I still tend to shy away from casual hugs and other forms of touch, but here I am, physically anchoring Dad while he clambers into the tub, and wielding a washcloth once he's in.
Touching his papery skin jolts me into memories of the other two adults I've washed – my friend Ruth and my mother, both women toward the end stages of cancer, both baths given awkwardly in hospitals that were not well set up for such projects. It's been more than ten years, but the shock of seeing their bodies, hollowed by surgery and illness like winter tree trunks, still feels strong.
The purpose of this bath was to prepare him for today's expedition to the urologist. Due to scheduling issues, no one was available to help me cart Dad to the doctor. Marie got him dressed, and we set off on our own. The wait at the office wasn't long, but Dad does as well with waiting as a toddler with ADHD, and I found myself wishing for a bag of toys to distract him with. Someone should invent some Alzheimer's toys and market them in a little tote bag for these occasions. Luckily, a candy jar on the reception desk provided some relief.
The doctor examined him with an ultrasound and then he and I wedged ourselves into a too-small bathroom for the peeing-in-a-cup routine. He was diagnosed with a urinary tract infection – my instincts were right on target – and then we were dispatched to the lab for some bloodwork and another cup. Dad's having to pee all the time came in handy when we got to the second cup.
As a reward afterwards, I took him to Burger King. I normally never set foot in these temples-to-the-hamburger, but it was close and casual enough to allow for some of Dad's odd behaviors, such as humming and drumming.
Yesterday, I gave Dad a bath. It's really nerve-wracking, navigating all those hard, slippery surfaces with someone with poor balance, even though we had assorted grab bars installed years ago. Like many people with Alzheimer's, Dad's become very resistant to bathing – Marie used to be able to get him to do it with reasonable frequency, but now he tells her that it's too cold or just says he doesn't feel like it. So far, I've had better luck – I've given him the last two baths he's had and haven't gotten any resistance, though he did tell me to make sure the bathroom was “tropical.”
Bathing Dad is a very hands-on process, which makes me have to overcome my natural hesitance about touch. As a child, I used to believe that people, especially my mother, were touch-telepaths and I was always afraid to rest my head against her for fear of thoughts leaking through the skin. I still tend to shy away from casual hugs and other forms of touch, but here I am, physically anchoring Dad while he clambers into the tub, and wielding a washcloth once he's in.
Touching his papery skin jolts me into memories of the other two adults I've washed – my friend Ruth and my mother, both women toward the end stages of cancer, both baths given awkwardly in hospitals that were not well set up for such projects. It's been more than ten years, but the shock of seeing their bodies, hollowed by surgery and illness like winter tree trunks, still feels strong.
The purpose of this bath was to prepare him for today's expedition to the urologist. Due to scheduling issues, no one was available to help me cart Dad to the doctor. Marie got him dressed, and we set off on our own. The wait at the office wasn't long, but Dad does as well with waiting as a toddler with ADHD, and I found myself wishing for a bag of toys to distract him with. Someone should invent some Alzheimer's toys and market them in a little tote bag for these occasions. Luckily, a candy jar on the reception desk provided some relief.
The doctor examined him with an ultrasound and then he and I wedged ourselves into a too-small bathroom for the peeing-in-a-cup routine. He was diagnosed with a urinary tract infection – my instincts were right on target – and then we were dispatched to the lab for some bloodwork and another cup. Dad's having to pee all the time came in handy when we got to the second cup.
As a reward afterwards, I took him to Burger King. I normally never set foot in these temples-to-the-hamburger, but it was close and casual enough to allow for some of Dad's odd behaviors, such as humming and drumming.
january 9th, 2010
/9/10
I met a man today whose mother has Alzheimer's. We quickly got into a conversation about our parents, exchanging details and stories. His mother is in a nursing home in Florida, near his sister, and he doesn't see her often. He says she doesn't talk at all, just smiles. “Thank God for the daughters,” he said, causing a burst of what I hope was well-hidden anger in me. I know women still have plenty of areas where we're not equal, but looking at this man, I just wanted to shake him and say “It's not fair to leave this whole horrible task to your sister. Do your share!”
The other thing he said that upset me was, “your Dad sounds like he's in stage 2. Enjoy that stage, it's temporary.” I suppose he meant well, but it made me cry – I don't need to be reminded that this is a progressive disease.
Overall, I don't really find talking to other relatives of people with Alzheimer's that helpful. When Trish, who works in the Church office, told me about her grandparent with Alzheimer's, we both wound up crying.
More than a few people have tried to steer me towards the ubiquitous support groups for Alzheimer's caregivers, but, while I totally understand the theory behind peer support groups, I think that listening to other peoples' stories would just make me cry. The only thing I can think of that might help me cope better is art therapy, but it doesn't seem to be a common offering. Normally, I work through things by sculpting or drawing, but lately I just haven't had the right energy – the images don't flow in my head the way they used to. And, of course, time spent making art is time taken away from work, Dad, the housekeeping, etc.
I met a man today whose mother has Alzheimer's. We quickly got into a conversation about our parents, exchanging details and stories. His mother is in a nursing home in Florida, near his sister, and he doesn't see her often. He says she doesn't talk at all, just smiles. “Thank God for the daughters,” he said, causing a burst of what I hope was well-hidden anger in me. I know women still have plenty of areas where we're not equal, but looking at this man, I just wanted to shake him and say “It's not fair to leave this whole horrible task to your sister. Do your share!”
The other thing he said that upset me was, “your Dad sounds like he's in stage 2. Enjoy that stage, it's temporary.” I suppose he meant well, but it made me cry – I don't need to be reminded that this is a progressive disease.
Overall, I don't really find talking to other relatives of people with Alzheimer's that helpful. When Trish, who works in the Church office, told me about her grandparent with Alzheimer's, we both wound up crying.
More than a few people have tried to steer me towards the ubiquitous support groups for Alzheimer's caregivers, but, while I totally understand the theory behind peer support groups, I think that listening to other peoples' stories would just make me cry. The only thing I can think of that might help me cope better is art therapy, but it doesn't seem to be a common offering. Normally, I work through things by sculpting or drawing, but lately I just haven't had the right energy – the images don't flow in my head the way they used to. And, of course, time spent making art is time taken away from work, Dad, the housekeeping, etc.
Jan 7th 2010
Dad seems to be having problems with urinating lately. I noticed that he seemed to be going to the bathroom pretty frequently recently, but JaeLynn actually kept track and found that he wakes up pretty much every hour to urinate. Not only that, but yesterday morning around 5am, she heard him shouting and found that he had gotten totally disoriented in the bedroom and peed in a corner, which has never happened before. Last night, she said he had a couple of incidents where he wet his pants on his way to the toilet.
Just to complicate matters, we just got him a new toilet seat, which is raised and has arms – it's really needed, since he has gotten stuck sitting on the toilet a couple of times recently and need another person to help him get up. The trouble is that Dad's having trouble remembering that it's there and aiming appropriately – because the seat part is wider than a regular toilet's, he has a smaller hole to aim for.
The last time he had “accidents”, it turned out that he had a urinary tract infection, which reminds me of the way cats with UTIs stop using the litterbox. So tonight I'm taking the urologist's number – Dad calls him “the piss doctor” - so I can make an appointment to see if there's anything medical that would help with this problem.
On the up side, Dad seems to be pretty pleased with all his caregivers – tuesday night he said “I love you,” to Kate S. as she was tucking him into bed, and then he said it again to Jaelynn when she gave him his breakfast wednesday morning.
Just to complicate matters, we just got him a new toilet seat, which is raised and has arms – it's really needed, since he has gotten stuck sitting on the toilet a couple of times recently and need another person to help him get up. The trouble is that Dad's having trouble remembering that it's there and aiming appropriately – because the seat part is wider than a regular toilet's, he has a smaller hole to aim for.
The last time he had “accidents”, it turned out that he had a urinary tract infection, which reminds me of the way cats with UTIs stop using the litterbox. So tonight I'm taking the urologist's number – Dad calls him “the piss doctor” - so I can make an appointment to see if there's anything medical that would help with this problem.
On the up side, Dad seems to be pretty pleased with all his caregivers – tuesday night he said “I love you,” to Kate S. as she was tucking him into bed, and then he said it again to Jaelynn when she gave him his breakfast wednesday morning.
Jan 1 2010
1/1/09
Taking a shower after midnight, when I thought Dad was safely asleep, I felt a draft which turned out to be Dad opening the door. He didn't seem to realize I was in the shower, just sleep-walked to the toilet. Once he was done, he stood there staring into the toilet bowl for an extended period. “Dad?” I asked, sticking my foaming head around the curtain. “How do you make this stop?” he asked, still staring at the toilet, convinced that the water sound from my shower was emanating from the bowl.
“Dad!” I yelled, trying to make myself heard over the rushing water, “it's not the toilet! It's the shower! I'm in the shower!” He just stood there, trying to process, until I reached out a waterlogged hand. The touch of wet skin made the pieces comes together for him. “Oh!” he said and headed out the door.
I rushed through the rest of my shower, knowing that the unexpectedness of our encounter had probably thrown him off his routine. When I emerged, I found that he had taken a wrong turn, and, instead of heading back to bed, he was in the living room, delicately handling my discarded clothes like someone holding up a newly shed snakeskin. “What's all this?” he asked. “Those are my clothes, Dad,” I explained. “I was in the shower.” I took his hand and led him back to bed, but instead of taking off his shoes and lying down, he just sat there. “I think I'm going crazy,” he kept saying, over and over, and no wonder – how strange it must seem to have a dripping, towel-clad young woman materialize in your apartment in the middle of the night to lead you back to bed.
Taking a shower after midnight, when I thought Dad was safely asleep, I felt a draft which turned out to be Dad opening the door. He didn't seem to realize I was in the shower, just sleep-walked to the toilet. Once he was done, he stood there staring into the toilet bowl for an extended period. “Dad?” I asked, sticking my foaming head around the curtain. “How do you make this stop?” he asked, still staring at the toilet, convinced that the water sound from my shower was emanating from the bowl.
“Dad!” I yelled, trying to make myself heard over the rushing water, “it's not the toilet! It's the shower! I'm in the shower!” He just stood there, trying to process, until I reached out a waterlogged hand. The touch of wet skin made the pieces comes together for him. “Oh!” he said and headed out the door.
I rushed through the rest of my shower, knowing that the unexpectedness of our encounter had probably thrown him off his routine. When I emerged, I found that he had taken a wrong turn, and, instead of heading back to bed, he was in the living room, delicately handling my discarded clothes like someone holding up a newly shed snakeskin. “What's all this?” he asked. “Those are my clothes, Dad,” I explained. “I was in the shower.” I took his hand and led him back to bed, but instead of taking off his shoes and lying down, he just sat there. “I think I'm going crazy,” he kept saying, over and over, and no wonder – how strange it must seem to have a dripping, towel-clad young woman materialize in your apartment in the middle of the night to lead you back to bed.
Monday, January 11, 2010
12/20/09
12/20/09
Dad decided he wanted a Christmas tree this year. Not a fan of killing trees, I suggested a live one and Dad was thrilled by the idea. So, today I got him a small, potted spruce at the farmers' market, and was hauling it, melting snow and all, up Dad's stairs, when I was greeted at the top by Charlie McKenna.
“I've been wanting to talk to you,” he said, always an ominous beginning, I think. He went on to tell me that on a couple of occasions lately, late at night, he has heard Dad bumbling around in the hall outside his apartment!!! Apparently Dad has been waking up and wandering out of his apartment door. It's a miracle he hasn't fallen down the stairs – they're only a few feet from the door – but apparently Charlie has been retrieving him, cooking him eggs, and putting him back to bed. Charlie wasn't complaining – in fact, he seemed sincerely touched by being able to do this for his old friend – but clearly this can't continue. I decided on the spot that Dad could not be left alone, even though it meant I had to spend the night with no preparations like clean clothes or spare meds.
I started to cry right there in the hall, tree, Charlie McKenna and all, because I can't help but see this as further evidence of Dad's deteriorating condition. The thing about Alzheimer's is that you get used to one stage of badness and are coping with it, and then a trap door opens under your feet and you're abruptly plunged to the next level of badness.
I was still crying surreptitiously when I carried the tree in and set it down in front of Dad. He touched it gingerly, taking in the texture of the needles and the mixed smells of evergreen and damp soil. “It's beautiful,” he said. “It's beautiful. I love it.”
Dad decided he wanted a Christmas tree this year. Not a fan of killing trees, I suggested a live one and Dad was thrilled by the idea. So, today I got him a small, potted spruce at the farmers' market, and was hauling it, melting snow and all, up Dad's stairs, when I was greeted at the top by Charlie McKenna.
“I've been wanting to talk to you,” he said, always an ominous beginning, I think. He went on to tell me that on a couple of occasions lately, late at night, he has heard Dad bumbling around in the hall outside his apartment!!! Apparently Dad has been waking up and wandering out of his apartment door. It's a miracle he hasn't fallen down the stairs – they're only a few feet from the door – but apparently Charlie has been retrieving him, cooking him eggs, and putting him back to bed. Charlie wasn't complaining – in fact, he seemed sincerely touched by being able to do this for his old friend – but clearly this can't continue. I decided on the spot that Dad could not be left alone, even though it meant I had to spend the night with no preparations like clean clothes or spare meds.
I started to cry right there in the hall, tree, Charlie McKenna and all, because I can't help but see this as further evidence of Dad's deteriorating condition. The thing about Alzheimer's is that you get used to one stage of badness and are coping with it, and then a trap door opens under your feet and you're abruptly plunged to the next level of badness.
I was still crying surreptitiously when I carried the tree in and set it down in front of Dad. He touched it gingerly, taking in the texture of the needles and the mixed smells of evergreen and damp soil. “It's beautiful,” he said. “It's beautiful. I love it.”
Dec. 5th 2009
12/05/09
Dad took us on an imaginary train journey last night. He was sitting at the dining room table while I cooked dinner and he started asking “are we getting off the train in New York or Boston?” He obviously thought we were on a Northeast Corridor train, heading north.
At first Brianna tried to explain that we were in New York, in his apartment, and not on a train, but it wasn’t getting through, so I decided we should play along. There’s a fancy name for this in Alzheimer’s research, but I can’t remember it. “We’re going to New York,” I told him. This satisfied him for a while. “Is the train moving?” he asked. “Do you feel it moving?” I asked back, not knowing what the correct answer would be. “No,” he said. “We’re in the station,” Kate S. chimed in. “What are we going to do in New York?” asked Dad. “Have dinner,” I told him. “What if it’s all full?” He was worried. “We have reservations,” I explained. Next, he began to worry about his luggage. “It’ll be delivered to your apartment,” we told him. “How much does that cost?” he wanted to know. “It’s included in the price of your ticket,” Kate S. assured him.
Dad always loved trains – they were his preferred mode of transportation, even if he was traveling cross-country- and when his mother was elderly and widowed, he used to practically commute between his life in New York and Boston, the Amtrak stop closest to Gloucester, so it makes sense that his imaginary travels involve trains, too.
We made one surprising discovery last night – the day before, Dad had been so tormented by a snatch of song stuck in his head that I decided to try to overpower it with another song. The only thing that came to mind was “Row, row, row your boat,” so I sang the first line, and Dad joined in on the second, humming along. Tonight, I decided to show Kate S. and Brianna, so I sang it again – Dad didn’t join in on the 2nd line, so I stopped singing, and then Dad piped up and sang the last line, words and all, “Life is but a dream.” How true that is for him these days.
Dad took us on an imaginary train journey last night. He was sitting at the dining room table while I cooked dinner and he started asking “are we getting off the train in New York or Boston?” He obviously thought we were on a Northeast Corridor train, heading north.
At first Brianna tried to explain that we were in New York, in his apartment, and not on a train, but it wasn’t getting through, so I decided we should play along. There’s a fancy name for this in Alzheimer’s research, but I can’t remember it. “We’re going to New York,” I told him. This satisfied him for a while. “Is the train moving?” he asked. “Do you feel it moving?” I asked back, not knowing what the correct answer would be. “No,” he said. “We’re in the station,” Kate S. chimed in. “What are we going to do in New York?” asked Dad. “Have dinner,” I told him. “What if it’s all full?” He was worried. “We have reservations,” I explained. Next, he began to worry about his luggage. “It’ll be delivered to your apartment,” we told him. “How much does that cost?” he wanted to know. “It’s included in the price of your ticket,” Kate S. assured him.
Dad always loved trains – they were his preferred mode of transportation, even if he was traveling cross-country- and when his mother was elderly and widowed, he used to practically commute between his life in New York and Boston, the Amtrak stop closest to Gloucester, so it makes sense that his imaginary travels involve trains, too.
We made one surprising discovery last night – the day before, Dad had been so tormented by a snatch of song stuck in his head that I decided to try to overpower it with another song. The only thing that came to mind was “Row, row, row your boat,” so I sang the first line, and Dad joined in on the second, humming along. Tonight, I decided to show Kate S. and Brianna, so I sang it again – Dad didn’t join in on the 2nd line, so I stopped singing, and then Dad piped up and sang the last line, words and all, “Life is but a dream.” How true that is for him these days.
Nov. 27, 2009
Yesterday, I took Dad to spend thanksgiving with the youth at New Alternatives. He got dressed and out of the house relatively easily, but once we got there his newfound impatience kicked in. While waiting for a volunteer to get him a cup of coffee, he said, loudly, “that’s the longest cup of coffee, ever!” and then proceeded to ask everyone who got close enough when we were going to eat. Luckily, Russell found some Ritz crackers and we distracted him with those for a while. Then, after eating, he started announcing that it was time to go. It was only 2:30pm, and the idea of all the empty hours between then and bedtime made me want to stay a while longer, but Dad just wasn’t having it, so we headed back to his house.
“I haven’t cast a spell in thirty years,” said Dad, sitting beside me on his couch. His next sentence cleared away my mental images of Dad muttering incantations; “Should I take off my clothes and try?” “No.” I said firmly, and that ended the conversation.
Fifteen minutes later, suddenly my leg was seized by a cramp. “Ow.ow.ow,” I said, squirming around trying to find a more comfortable position. “That’s because you wouldn’t fuck,” said Dad, smugly.
Marie, his steadfast housekeeper, is taking today off to get married at City Hall. She has arranged for a substitute, so I only have to make it through my usual evening shift, but without Kate and Brianna, who are in Maine for thanksgiving, I’m afraid it’s going to be another boring evening. I’m having trouble finding ways to keep us occupied and today I’m dreading going over there and then feeling bad about wanting to avoid it.
“I haven’t cast a spell in thirty years,” said Dad, sitting beside me on his couch. His next sentence cleared away my mental images of Dad muttering incantations; “Should I take off my clothes and try?” “No.” I said firmly, and that ended the conversation.
Fifteen minutes later, suddenly my leg was seized by a cramp. “Ow.ow.ow,” I said, squirming around trying to find a more comfortable position. “That’s because you wouldn’t fuck,” said Dad, smugly.
Marie, his steadfast housekeeper, is taking today off to get married at City Hall. She has arranged for a substitute, so I only have to make it through my usual evening shift, but without Kate and Brianna, who are in Maine for thanksgiving, I’m afraid it’s going to be another boring evening. I’m having trouble finding ways to keep us occupied and today I’m dreading going over there and then feeling bad about wanting to avoid it.
Nov. 23, 2009
“I’m about as old as you can get,” says Dad.
I’m bustling around the kitchen, cooking dinner, while Dad sits at the dining room table listening to the chopping and the clanging of pots and the sound of the kettle boiling. “It sounds like a very good dinner,” he says, and I am struck by the unusual way he uses his senses.
Lately, every evening, Dad gets confused about where he is. “This is my place?” he asks. When we tell him it is, he says, “So I can stay here if I want to?” We encourage him to stay, and then the next question comes: “is there a bed?” We’ve taken to leading him down the hall by the hand, first to the bathroom, then to bed. Then the ritual requires waiting while he takes off his shoes and pants, and maybe a sweater, which he hands over to be put away, then saying good-night a few times, closing the door, and slipping quietly out of the apartment. There’s something about this process that reminds me of small children I have taken care of and their bedtime rituals.
Blog is back
Sorry for the delay - my old computer's slow death made it impossible to post entries, although I was still writing them. Now that I have a new computer, I will post them in order from November-present.
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