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.
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