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.
Sunday, November 15, 2009
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.
Wednesday, October 28, 2009
October 28, 2009: yogurt
This week has been challenging for Team Dad. On Monday, Kate S. was talking to Dad on the phone and told him she would be coming to see him the next day. Then I, desperate for conversation topics, told Dad that he would be coming to my house for Halloween, to hand out candy to the kids. He loves children, and has always enjoyed this in the past, so I thought it would make him happy.
Unfortunately, all this information about the future overloaded Dad’s fragile memory banks and sent him into a spin. He spent the entire rest of the evening interrogating me: “Tomorrow is?” he would start. “Tuesday, Dad,” I would answer. “And something is happening?” he inquired. “Big Kate is coming to visit you,” I’d tell him. “What time?” he wanted to know. “4pm.” I answered. “Do I need to dress up?” he’d ask, in a worried tone. “No, just wear pants,” I’d tell him. “Pants?” he’d ask, confused. “Trousers!” I shouted. “What’s tomorrow?” the loop begins again. “Tuesday, Dad” . . . and we did that for HOURS.
On Tuesday, when Kate S. actually arrived, Dad repeated the exercise, except this time he was asking her about Saturday. “Something’s happening on Saturday?” he’d ask and on it went, repeating until she was on the verge of tears.
Today, during the day, Dad had forgotten all but “Something’s Happening?” which he repeated to his housekeeper so often that she called me to see if I had any idea what he was talking about. I explained to her that he’s coming to my house for Halloween, but I have no idea if she tried to explain it to him because by the time I got there tonight, he had forgotten all about it and didn’t mention it at all.
I guess it’s a lesson for us Dad-keepers: don’t mention future plans because he remembers only enough to make him know there’s more he should know and it makes him anxious.
Luckily, this evening with Brianna and I, he was pretty mellow. “What are you doing now?” he asked me. “I’m looking at you,” I told him. “That’s all you’re doing?” he replied, “Jesus, that’s dangerous!”
Later he asked me, for the umpteenth time, how old he was. “86” I replied. “Is it possible that I be that old and still walk around and talk around?” he asked me. “How old can a person be and still have kittens?” he wanted to know. “Babies?” I asked. “Yes.” He replied. I broke into laughter at the idea of a person delivering a litter of kittens.
He was playing around with his voices again, too. “Kitty cat, kitty cat, kitty cat, where are you going kitty cat?” asked his normal voice. He replied, in his special cat voice, “I’m going to shit.” The cat herself slept through this performance.
Somehow we wound up talking about yogurt, and Dad was fascinated by the sound of the word. “Yogurt. Yo-gurt. Does that mean anything?” he asked me. “I don’t think so,” I responded. “’yo’, that means ‘I’ and ‘gurt’ – I don’t know,” he said, startling me – I didn’t know he remembered any Spanish.
And then there were the just plain mysterious remarks: “There’s something different about the animal catching or seeing or believing, I think. In the old days, they either fucked him or washed him away,” declared Dad, authoritatively. I have no idea what he meant.
Unfortunately, all this information about the future overloaded Dad’s fragile memory banks and sent him into a spin. He spent the entire rest of the evening interrogating me: “Tomorrow is?” he would start. “Tuesday, Dad,” I would answer. “And something is happening?” he inquired. “Big Kate is coming to visit you,” I’d tell him. “What time?” he wanted to know. “4pm.” I answered. “Do I need to dress up?” he’d ask, in a worried tone. “No, just wear pants,” I’d tell him. “Pants?” he’d ask, confused. “Trousers!” I shouted. “What’s tomorrow?” the loop begins again. “Tuesday, Dad” . . . and we did that for HOURS.
On Tuesday, when Kate S. actually arrived, Dad repeated the exercise, except this time he was asking her about Saturday. “Something’s happening on Saturday?” he’d ask and on it went, repeating until she was on the verge of tears.
Today, during the day, Dad had forgotten all but “Something’s Happening?” which he repeated to his housekeeper so often that she called me to see if I had any idea what he was talking about. I explained to her that he’s coming to my house for Halloween, but I have no idea if she tried to explain it to him because by the time I got there tonight, he had forgotten all about it and didn’t mention it at all.
I guess it’s a lesson for us Dad-keepers: don’t mention future plans because he remembers only enough to make him know there’s more he should know and it makes him anxious.
Luckily, this evening with Brianna and I, he was pretty mellow. “What are you doing now?” he asked me. “I’m looking at you,” I told him. “That’s all you’re doing?” he replied, “Jesus, that’s dangerous!”
Later he asked me, for the umpteenth time, how old he was. “86” I replied. “Is it possible that I be that old and still walk around and talk around?” he asked me. “How old can a person be and still have kittens?” he wanted to know. “Babies?” I asked. “Yes.” He replied. I broke into laughter at the idea of a person delivering a litter of kittens.
He was playing around with his voices again, too. “Kitty cat, kitty cat, kitty cat, where are you going kitty cat?” asked his normal voice. He replied, in his special cat voice, “I’m going to shit.” The cat herself slept through this performance.
Somehow we wound up talking about yogurt, and Dad was fascinated by the sound of the word. “Yogurt. Yo-gurt. Does that mean anything?” he asked me. “I don’t think so,” I responded. “’yo’, that means ‘I’ and ‘gurt’ – I don’t know,” he said, startling me – I didn’t know he remembered any Spanish.
And then there were the just plain mysterious remarks: “There’s something different about the animal catching or seeing or believing, I think. In the old days, they either fucked him or washed him away,” declared Dad, authoritatively. I have no idea what he meant.
Sunday, October 25, 2009
10/24/09: gangsta Dad
Kate S. took this picture of Dad, wearing his hat "gangsta" style.Dad found my pants, which I had hung in the bathroom to dry. He came shuffling out of his bedroom with the elastic waist drooping around his hips and crinkly purple fabric ballooning around his skinny legs. "Dad, you're wearing my pants!" I exclaimed, and led him back to his bedroom. While I was helping him change, I said "Dad, didn't you notice that they were too big?" "Huge," he said "huge!"
Wednesday, October 14, 2009
october 8 2009: arrogance lesson
10/8/09
Showing up at Dad’s, I find him in bed, but not asleep. He’s very surprised to see me and asks what time it is. When I tell him it’s 5 o’clock, he thinks I mean 5am, and I can’t convince him otherwise. When his friend Peter calls, he wonders why he’s calling at such an odd hour. To me, he says, “your parents don’t complain about early business?” “You are my parent,” I tell him. “So, I have to pay you,” he says. “No, you don’t,” I tell him, surprised by the twist the conversation has taken. “Yes, I do,” he insists.
“Big Kate is at an Arabic lesson,” I tell Dad. “An arrogance lesson?” he asks. “No, an Arabic lesson,” I clarify. “What’s that mean?” he wants to know. “Arabic is a language,” I explain.
“How old are you?” Dad asks me for what seems like the millionth time. “33,” I answer. “Mini, mini, mini,” he comments.
He’s struggling with his words, getting words that have the same sounds or rhythm mixed up. He starts a sentence, “I, under the underhand . . . “ when he means “I, on the other hand . . . “
“I’m very unused to this,” Dad declares. I have no idea what he’s talking about. “Unused to what?” I ask. “This usage of philosophy,” he responds. We have not been discussing anything remotely philosophical. “Oh,” I say, lost. “So you’ll have to be very careful,” he continues, “this should be an adventure.”
Showing up at Dad’s, I find him in bed, but not asleep. He’s very surprised to see me and asks what time it is. When I tell him it’s 5 o’clock, he thinks I mean 5am, and I can’t convince him otherwise. When his friend Peter calls, he wonders why he’s calling at such an odd hour. To me, he says, “your parents don’t complain about early business?” “You are my parent,” I tell him. “So, I have to pay you,” he says. “No, you don’t,” I tell him, surprised by the twist the conversation has taken. “Yes, I do,” he insists.
“Big Kate is at an Arabic lesson,” I tell Dad. “An arrogance lesson?” he asks. “No, an Arabic lesson,” I clarify. “What’s that mean?” he wants to know. “Arabic is a language,” I explain.
“How old are you?” Dad asks me for what seems like the millionth time. “33,” I answer. “Mini, mini, mini,” he comments.
He’s struggling with his words, getting words that have the same sounds or rhythm mixed up. He starts a sentence, “I, under the underhand . . . “ when he means “I, on the other hand . . . “
“I’m very unused to this,” Dad declares. I have no idea what he’s talking about. “Unused to what?” I ask. “This usage of philosophy,” he responds. We have not been discussing anything remotely philosophical. “Oh,” I say, lost. “So you’ll have to be very careful,” he continues, “this should be an adventure.”
Saturday, October 10, 2009
10/10/09 Coming Out Day
10/10/09
As soon as I got to his house today, Dad announced, “Thank goodness you’re here, now I can get some rest!” and headed off to bed. About an hour later, he emerged. “Are you up?” I asked him. “I don’t know if I’m up, down, or sideways,” he replied.
I tell Dad the story of Pax’s tail-vs.-flypaper incident this morning, but I had to describe flypaper to him: “it’s a strip of paper coated in glue so that bugs will stick to it and you can get rid of them,” I carefully explained. When I got to the part about Pax trying to outrun the flypaper wrapped around his tail, Dad burst into laughter.
Later, he asks me what kind of work I do. “I work with young people,” I tell him. “So you always have people alive,” he observes. “There’s not much you can do for people who aren’t alive,” I respond, trying not to laugh. “Except bury them,” he says.
Continuing on the same general subject, Dad says, in a confused tone, “people who are alive live longer than people who are not alive, is that it?”
Dad is obviously searching for something, feeling various objects in his vicinity. “What are you looking for?” I ask. “Any idea where a posture, a commonplace, is?” he responds, unhelpfully. When I don’t respond, he elaborates, “something to put over me?” “A sweater?” I ask, bringing him one. “Yes.”
“Where are we now?” Dad asks, while we are sitting on his couch. “In your living room,” I tell him. “I know that,” he says, impatiently. “Where are we technologically?” I am at a loss.
“What do you think the percentage is of people who don’t get born, but come alive?” I think of Frankenstein. “Zero,” I say. I can tell he doesn’t believe me.
After dinner, Dad gets into a thoughtful mood. “In a sense, I’ve been ashamed all my life,” he says. “Ashamed of what?” I ask. “Everything,” he says.
“50 years ago, people thought about it, but didn’t talk about it, but now they talk about it. If you talked like that 50 years ago, you’d get fired,” says Dad, rather mysteriously. “Now, they don’t care. ‘I’m not normal’ ‘oh,OK, teach your class, everyone’s a little different.’ But 50 years ago you had to shut up and I’m so old I don’t give a damn.” Am I hearing right? Is my Dad talking about being a closeted teacher?
“Some people are absolutely against all of this and the moment there’s any suggestion of –‘out! Get out!’” he continues.“Nobody’s going to kick you out or fire you now,” I reassure him, since he seems genuinely alarmed at the thought. “No, of course not, not in this City. They might have been the best teachers around, but bang!” he says.
“Tomorrow there’s going to be a big march for homosexual rights in DC,” I tell him, purposely using the word that he and his octogenarian friends tend to prefer. “Really?” he asks. “I’d like to see that. And I bet nobody throws anything at it, but 50 years ago . . . “
This is not the first time in his post-Alzheimer’s life that Dad has raised the issue of his own sexual identity, and it really confuses me. I always thought he was straight, but then again, people have a way of not noticing things that are under their own noses. Was I in denial? His many gay friends, his total acceptance of me and my queer friends, the money he gave to ACT UP and GMHC, the gay pride parades . . . those could all be seen as clues.
On the other hand, what about the collection of black cheerleader porn? Or his love for Andy Dupee (who herself married a closeted gay man)? Or my mother? I only saw him touch her in a romantic way once, but it was undeniably genuine. On the morning she died, when he came to relieve me after I’d sat with her all night, he climbed onto her hospital bed, gathered her in his arms and began kissing her gently all over. I fled the room, went home and fell into bed, and he was the one who was with her when she took her last breath.
I guess it’s really not an either/or situation – I, of all people, should know that sexual identity is a spectrum and he has said himself that he never knew whether he was straight or gay. At the time, I thought maybe that wasn’t really what he meant, just the dementia mixing up his words, but now I wonder whether what’s actually happening is that the dementia is lifting away his inhibitions, making him free to come out.
Tomorrow is National Coming Out Day.
As soon as I got to his house today, Dad announced, “Thank goodness you’re here, now I can get some rest!” and headed off to bed. About an hour later, he emerged. “Are you up?” I asked him. “I don’t know if I’m up, down, or sideways,” he replied.
I tell Dad the story of Pax’s tail-vs.-flypaper incident this morning, but I had to describe flypaper to him: “it’s a strip of paper coated in glue so that bugs will stick to it and you can get rid of them,” I carefully explained. When I got to the part about Pax trying to outrun the flypaper wrapped around his tail, Dad burst into laughter.
Later, he asks me what kind of work I do. “I work with young people,” I tell him. “So you always have people alive,” he observes. “There’s not much you can do for people who aren’t alive,” I respond, trying not to laugh. “Except bury them,” he says.
Continuing on the same general subject, Dad says, in a confused tone, “people who are alive live longer than people who are not alive, is that it?”
Dad is obviously searching for something, feeling various objects in his vicinity. “What are you looking for?” I ask. “Any idea where a posture, a commonplace, is?” he responds, unhelpfully. When I don’t respond, he elaborates, “something to put over me?” “A sweater?” I ask, bringing him one. “Yes.”
“Where are we now?” Dad asks, while we are sitting on his couch. “In your living room,” I tell him. “I know that,” he says, impatiently. “Where are we technologically?” I am at a loss.
“What do you think the percentage is of people who don’t get born, but come alive?” I think of Frankenstein. “Zero,” I say. I can tell he doesn’t believe me.
After dinner, Dad gets into a thoughtful mood. “In a sense, I’ve been ashamed all my life,” he says. “Ashamed of what?” I ask. “Everything,” he says.
“50 years ago, people thought about it, but didn’t talk about it, but now they talk about it. If you talked like that 50 years ago, you’d get fired,” says Dad, rather mysteriously. “Now, they don’t care. ‘I’m not normal’ ‘oh,OK, teach your class, everyone’s a little different.’ But 50 years ago you had to shut up and I’m so old I don’t give a damn.” Am I hearing right? Is my Dad talking about being a closeted teacher?
“Some people are absolutely against all of this and the moment there’s any suggestion of –‘out! Get out!’” he continues.“Nobody’s going to kick you out or fire you now,” I reassure him, since he seems genuinely alarmed at the thought. “No, of course not, not in this City. They might have been the best teachers around, but bang!” he says.
“Tomorrow there’s going to be a big march for homosexual rights in DC,” I tell him, purposely using the word that he and his octogenarian friends tend to prefer. “Really?” he asks. “I’d like to see that. And I bet nobody throws anything at it, but 50 years ago . . . “
This is not the first time in his post-Alzheimer’s life that Dad has raised the issue of his own sexual identity, and it really confuses me. I always thought he was straight, but then again, people have a way of not noticing things that are under their own noses. Was I in denial? His many gay friends, his total acceptance of me and my queer friends, the money he gave to ACT UP and GMHC, the gay pride parades . . . those could all be seen as clues.
On the other hand, what about the collection of black cheerleader porn? Or his love for Andy Dupee (who herself married a closeted gay man)? Or my mother? I only saw him touch her in a romantic way once, but it was undeniably genuine. On the morning she died, when he came to relieve me after I’d sat with her all night, he climbed onto her hospital bed, gathered her in his arms and began kissing her gently all over. I fled the room, went home and fell into bed, and he was the one who was with her when she took her last breath.
I guess it’s really not an either/or situation – I, of all people, should know that sexual identity is a spectrum and he has said himself that he never knew whether he was straight or gay. At the time, I thought maybe that wasn’t really what he meant, just the dementia mixing up his words, but now I wonder whether what’s actually happening is that the dementia is lifting away his inhibitions, making him free to come out.
Tomorrow is National Coming Out Day.
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