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.
Monday, January 11, 2010
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.
Sunday, November 15, 2009
Nov. 15, 2009: Looking for my visibility
After an afternoon of wandering through the Central Park Zoo on wednesday, Mike came back with me to visit Dad. Dad was in an unusually argumentative frame of mind. It took some cajoling to get him to eat dinner, and he did so grumpily. While he ate, Mike and I sat on the couch, petting Kristen. “What are you two doing over there in the dark?” Dad suddenly asked. All the lights were on. “Dad, it’s not dark,” I explained, “your eyes are bad.” He clearly didn’t believe me, but kept eating. A few minutes later, he said, “You just came here to fuck.” “That’s not true,” I told him. “I came here to see you,” added Mike, who is in a committed relationship with someone else, but Dad was not mollified. He took a few more mouthfuls. “I’ll be out of the way in a few minutes,” he said. No amount of reassurance could convince him that he was not in the way, and he headed off to bed.
Sexuality seems to be this week’s theme. When I arrived on Thursday, Dad wasn’t wearing any pants. I figured he was going to bed soon, so I didn’t make a fuss about it, but then he started fondling his penis. While I was trying to work through my shock and figure out what to do, Dad must have picked up on my vibes, because he asked, “Does it bother you when I play with my toy – this thing?” “People usually do that in private, Dad,” I told him, struggling to keep my voice calm, because I didn’t want him to feel bad. “I’m not doing it in private, am I?” Dad asked. “No, you’re not,” I told him. “Better cover up,” he said, pulling his sweater down over his thighs. And that was that.
On Friday, Dad was investigating the wall of his apartment. “What are you doing?” I asked. “I’m looking for my visibility. I don’t know where it is,” he responded.
Dad signed my birthday card! I didn’t know he could still write, but Kate S. gave him a pen and he wrote three shaky letters, “D-A-D,” followed by an exclamation point. When Kate S. asked him what the exclamation point was for, he said “I can’t remember the word.” “Emphasis?” she asked. “Yes!” said Dad. We celebrated my birthday at his house, at our Friday night dinner, with an accidentally flourless cake. Nobody knew there was anything wrong until I admitted my mistake (after they’d eaten it!). I guess I’m a little frazzled these days.
Sexuality seems to be this week’s theme. When I arrived on Thursday, Dad wasn’t wearing any pants. I figured he was going to bed soon, so I didn’t make a fuss about it, but then he started fondling his penis. While I was trying to work through my shock and figure out what to do, Dad must have picked up on my vibes, because he asked, “Does it bother you when I play with my toy – this thing?” “People usually do that in private, Dad,” I told him, struggling to keep my voice calm, because I didn’t want him to feel bad. “I’m not doing it in private, am I?” Dad asked. “No, you’re not,” I told him. “Better cover up,” he said, pulling his sweater down over his thighs. And that was that.
On Friday, Dad was investigating the wall of his apartment. “What are you doing?” I asked. “I’m looking for my visibility. I don’t know where it is,” he responded.
Dad signed my birthday card! I didn’t know he could still write, but Kate S. gave him a pen and he wrote three shaky letters, “D-A-D,” followed by an exclamation point. When Kate S. asked him what the exclamation point was for, he said “I can’t remember the word.” “Emphasis?” she asked. “Yes!” said Dad. We celebrated my birthday at his house, at our Friday night dinner, with an accidentally flourless cake. Nobody knew there was anything wrong until I admitted my mistake (after they’d eaten it!). I guess I’m a little frazzled these days.
Nov. 9, 2009
11/9/09
Something’s up with Dad. On Friday, when Kate S, Brianna and I gathered for our Friday night family dinner at Dad’s place, we found him in bed, asleep. He didn’t emerge until 8pm, stayed up for an hour and a half and then went back to bed. He was asleep again when I arrived on Saturday, didn’t get up until 5pm, and then headed back to bed at 8pm. On Sunday, he was awake, but when Michael tried to give him dinner, he said he wasn’t hungry and refused to eat it, a very unusual behavior for Dad.
I asked him if he felt sick and he said no, but that doesn’t necessarily mean he’s not sick. I think I’ll take his temperature tonight, just to be sure. Of course, this behavior could also be the result of a psychological issue – Alzheimer’s usually makes people sleep less, not more, but I suppose he might be waking up at night when we’re not there and then sleeping during the day to make up for it. I’m seriously considering setting up a “Dad-cam” in his bedroom so that I can see what he’s doing late at night. If he is becoming nocturnal, then it has implications for scheduling his care – there’s not much point in having people go over there when he’s asleep, but I’d have to hire someone to sit with him at night if he’s awake then. I don’t know how we’d pay for it, but my friends and I can’t stay up at those hours. If he is waking up at night, it must be really late because I stayed at his house until 2am Thursday since I had to catch a 3am train, and he was sound asleep.
Another possibility is depression – or boredom or a combination. His world is definitely becoming increasingly limited. It’s hard to know what to do if depression is the problem – I’m hesitant to add any psychotropic drugs to the mix since they tend to have a lot more adverse reactions in the elderly and his brain’s already pretty scrambled. I suppose I could take him to Dr. Honig, but it takes forever to get an appt with him. If he’s bored, then we need to find more activities for him – a challenge when you add his blindness into the mix. But what if he’s going to bed because the world is too confusing and bed is where he feels safe? In that case he might need less stimulation, not more.
It’s so difficult to figure all this out when dealing with someone who can’t communicate clearly. I almost wish I could bring him to the vet – he’s used to figuring out what’s going on in patients who can’t talk.
Something’s up with Dad. On Friday, when Kate S, Brianna and I gathered for our Friday night family dinner at Dad’s place, we found him in bed, asleep. He didn’t emerge until 8pm, stayed up for an hour and a half and then went back to bed. He was asleep again when I arrived on Saturday, didn’t get up until 5pm, and then headed back to bed at 8pm. On Sunday, he was awake, but when Michael tried to give him dinner, he said he wasn’t hungry and refused to eat it, a very unusual behavior for Dad.
I asked him if he felt sick and he said no, but that doesn’t necessarily mean he’s not sick. I think I’ll take his temperature tonight, just to be sure. Of course, this behavior could also be the result of a psychological issue – Alzheimer’s usually makes people sleep less, not more, but I suppose he might be waking up at night when we’re not there and then sleeping during the day to make up for it. I’m seriously considering setting up a “Dad-cam” in his bedroom so that I can see what he’s doing late at night. If he is becoming nocturnal, then it has implications for scheduling his care – there’s not much point in having people go over there when he’s asleep, but I’d have to hire someone to sit with him at night if he’s awake then. I don’t know how we’d pay for it, but my friends and I can’t stay up at those hours. If he is waking up at night, it must be really late because I stayed at his house until 2am Thursday since I had to catch a 3am train, and he was sound asleep.
Another possibility is depression – or boredom or a combination. His world is definitely becoming increasingly limited. It’s hard to know what to do if depression is the problem – I’m hesitant to add any psychotropic drugs to the mix since they tend to have a lot more adverse reactions in the elderly and his brain’s already pretty scrambled. I suppose I could take him to Dr. Honig, but it takes forever to get an appt with him. If he’s bored, then we need to find more activities for him – a challenge when you add his blindness into the mix. But what if he’s going to bed because the world is too confusing and bed is where he feels safe? In that case he might need less stimulation, not more.
It’s so difficult to figure all this out when dealing with someone who can’t communicate clearly. I almost wish I could bring him to the vet – he’s used to figuring out what’s going on in patients who can’t talk.
Monday, November 2, 2009
October 31 2009 Halloween
I brought Dad to my house today so he could hand out the Halloween candy. He looked adorable in his jester’s hat and it was warm enough for him to sit out front with the basket of candy. It went well at first, though he kept getting impatient during the intervals between children and he kept trying to give candy to passing adults.
The trouble came when he needed to use the bathroom – the bathroom in my house is up a flight of twisty wooden stairs and Dad just couldn’t manage them – he went up about three and then it became clear he couldn’t do it. All my neighbors’ houses are set up the same way, so the only solution was to walk down to the bar on the corner. All the way, Dad kept complaining about having to walk a “half-mile” and saying that he should just “piss out the window,” an activity that would cause a riot in my uptight neighborhood.
Once we got back to his house, Dad was struggling to understand where we’d been and why. “We were gone for several days?” he asked. “No, Dad, just six hours.” I told him. Realizing the difference between his perceptions and the reality of what had actually happened made Dad worry about his brain. “Am I liable to jump out the window?” he asked me. After I reassured him about that, he asked, “Am I going to walk and walk and walk and not remember where I am?” Although this scenario was more likely than his jumping out the window, I reassured him again and reminded him that he doesn’t go out alone. Even if he did venture out alone, he wouldn’t get very far, since half a block is his maximum walking distance these days. And then came the third question, one he has never asked before,“Is there a cure?” I tried to be as gentle as possible as I explained that there is no cure, but it was a heartbreaking moment.
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