Nightmares about Dad again. Not as intense and vivid as the fever dreams, but enough to wake me up. In one, I found him wandering the streets, naked. In another, he was falling. It doesn’t take a lot of analytical skill to figure out what’s on my mind.
Marie/Obama was out yesterday, and Dad was alone most of the day. When he goes for hours without contact with people, his language gets worse, so by the time I got there, he was pretty deep into Alzheimer-land.
When I arrived, he asked me about the “other two Indians,” an alzheimerish way of referring to Kate and Brianna. Later on, he asked me “how’s the big sister’s foot?” referring to Kate S. again. Later, hearing a siren, after much verbal flailing, he asked “do you know whether the guys who go to get fires going have different noises or not?” Of course, he meant firefighters, and was wondering whether they had different sirens than the police..
His confusion continued when I commented on his cigar, a genuine Cuban cigar, one of a box smuggled from Holland for him by a friend. “It’s illegal to smoke in Cuba?” “No, Dad, Cuban things are illegal in the U.S.”
At the end of the evening, Dad started asking for “a cup, a cup, a cup of . . . “ I offered him a few options, water, juice, milk, but he kept struggling. Finally, he got to “the stuff that loosens.” “Metamucil!” I exclaimed. Dad looked confused. “The stuff that helps with shitting,” I clarified and he nodded. I tore open a packet, poured the powdery contents into a glass of juice, stirred and gave it to Dad. It looked gross to me, but he drank it all.
Saturday, January 31, 2009
Wednesday, January 28, 2009
1/28/09
“What’s for dinner?” Dad is watching me unpack the groceries. “Lasagna.” “What’s lasagna?” Kate S. tries to explain “It’s pasta, like noodles, but wide.” “With cheese and tomato sauce,” I interject. “In layers,” she adds. “Is cheese OK?” Dad asks, stumping us both. A moment of silence occurs while we both try to figure out what he means. Coming up blank, we go into Alzheimer’s default mode – cheerful reassurance. “Cheese is great, Dad,” I say, just as Kate S., with equal forced enthusiasm, says “Cheese is awesome.” He gives us a look, clearly thinking that we’re the odd ones. Half an hour later, I realize that he is asking if cheese is OK because I’m a vegetarian. Oops.
Kate S. is telling Dad about her upcoming blood tests, for which she has to fast. “Should I take these tests?” asks Dad. “No, Dad, you don’t have problems with your blood sugar.” “I’ve never taken any tests where I couldn’t eat.” “Yes, you have Dad. You couldn’t eat before your colonoscopy.” “What’s a colonoscopy?” Uh-oh. Now I’ve done it. Might as well be direct. “It’s a test where they stick a camera up your ass, Dad.” “Nobody’s ever stuck a camera up my ass, and if they did, it wouldn’t get very far,” says Dad, indignantly. Later, Kate S. says, laughing, “He must have been thinking of a Nikon!” Dad was an avid photographer when his eyes were good, but that was long before current miniaturization. “It’s a very tiny camera,” Kate S. tells him.
“Dad, you’ve had a couple of colonoscopies , but maybe you don’t remember them because they put you to sleep.” “They can put you to sleep just like that and then wake you up?” “It took a while for you to wake up, and then you were farting a lot, remember? You woke up and asked ‘what’s the French word for fart?’” “What is the French word for fart?” Oh, dear. He won’t stop asking until he gets an answer. I reach for the computer, turn it on. “It won’t be in there,” says Dad, doubtfully. I google “French word for fart” and get a list of sites. I click one and read “pet”. Dad is amazed, “computers can do anything!” Kate S. meanwhile, has spotted a link titled “fart thesaurus” and can’t resist. She starts reading the lengthy list to Dad, who grows more and more astonished. “How many pages are in that book?” We try to explain that it’s a screen, not a book, but he’s focused on the length of the list.
Dad is watching me send a text message. “What is she doing?” “Sending a message,” says Kate S. Dad listens for a minute to the beeps as my fingers hit the letters and then he announces “She knows morse code!”
Kate S. is telling Dad about her upcoming blood tests, for which she has to fast. “Should I take these tests?” asks Dad. “No, Dad, you don’t have problems with your blood sugar.” “I’ve never taken any tests where I couldn’t eat.” “Yes, you have Dad. You couldn’t eat before your colonoscopy.” “What’s a colonoscopy?” Uh-oh. Now I’ve done it. Might as well be direct. “It’s a test where they stick a camera up your ass, Dad.” “Nobody’s ever stuck a camera up my ass, and if they did, it wouldn’t get very far,” says Dad, indignantly. Later, Kate S. says, laughing, “He must have been thinking of a Nikon!” Dad was an avid photographer when his eyes were good, but that was long before current miniaturization. “It’s a very tiny camera,” Kate S. tells him.
“Dad, you’ve had a couple of colonoscopies , but maybe you don’t remember them because they put you to sleep.” “They can put you to sleep just like that and then wake you up?” “It took a while for you to wake up, and then you were farting a lot, remember? You woke up and asked ‘what’s the French word for fart?’” “What is the French word for fart?” Oh, dear. He won’t stop asking until he gets an answer. I reach for the computer, turn it on. “It won’t be in there,” says Dad, doubtfully. I google “French word for fart” and get a list of sites. I click one and read “pet”. Dad is amazed, “computers can do anything!” Kate S. meanwhile, has spotted a link titled “fart thesaurus” and can’t resist. She starts reading the lengthy list to Dad, who grows more and more astonished. “How many pages are in that book?” We try to explain that it’s a screen, not a book, but he’s focused on the length of the list.
Dad is watching me send a text message. “What is she doing?” “Sending a message,” says Kate S. Dad listens for a minute to the beeps as my fingers hit the letters and then he announces “She knows morse code!”
Sunday, January 25, 2009
1/25/09
Today Dad was watching me order his groceries online. He’s slowly getting used to the computer, but the online groceries really had him mystified. “How are they going to fit them in the mailbox?” I nearly fell on the floor laughing at the idea of a delivery man trying to shove the groceries into Dad’s narrow slot of a mailbox. But Dad was seriously puzzled, so I tried to explain, “they’ll bring them upstairs, Dad.” He still seemed confused. Hopefully he’ll understand when they arrive tomorrow – once he tried to send the groceries away because he forgot they were coming and thought they weren’t his.
The other problem with Dad and deliveries is that the door buzzer has disappeared from his reality. It’s not just that he doesn’t remember how to use it – Brianna tried standing outside the front door with her cell phone and talking him through it, but it didn’t work, he just came downstairs to let her in anyway.
Going downstairs to let people in is problematic in several ways . Aside from the possibility of falling since his knees are bad and he can’t see, there’s also the problem of clothing – or lack of it. He’s firmly convinced that if old people’s chests get cold they die on the spot, so he always wears multiple layers of shirts and sweaters, and he hates having his head or feet cold, so he wears a hat, socks, and shoes, but he considers underwear and pants optional. It’s one thing in the house, but going down four flights of stairs he could run into neighbors. Marie/Obama says that the other day when she forgot her keys, he came and opened the front door for her nude from waist to ankles.
The other problem with Dad and deliveries is that the door buzzer has disappeared from his reality. It’s not just that he doesn’t remember how to use it – Brianna tried standing outside the front door with her cell phone and talking him through it, but it didn’t work, he just came downstairs to let her in anyway.
Going downstairs to let people in is problematic in several ways . Aside from the possibility of falling since his knees are bad and he can’t see, there’s also the problem of clothing – or lack of it. He’s firmly convinced that if old people’s chests get cold they die on the spot, so he always wears multiple layers of shirts and sweaters, and he hates having his head or feet cold, so he wears a hat, socks, and shoes, but he considers underwear and pants optional. It’s one thing in the house, but going down four flights of stairs he could run into neighbors. Marie/Obama says that the other day when she forgot her keys, he came and opened the front door for her nude from waist to ankles.
Saturday, January 24, 2009
Blueberries
Arriving today, I asked Dad if he was hungry – he sometimes doesn’t eat when he’s alone. “No, I had a big breakfast.” He eyeballs the shopping bags I’ve set down on the couch. “Got any dessert?” Smart man. He knows he can count on me to bring treats. “Blueberry cheesecake,” I say, getting a plate for him. He takes a few bites, then says, contentedly, “big, fat blueberries.”
Blueberries always make me think of Dad because there are two long rows of blueberry bushes in the backyard of our house in Gloucester, pretty much all that remains of the gardens and fruit trees that surrounded the house when Dad was growing up there. During my childhood, every year Dad would make a trip up there in the Spring to prune the blueberry bushes, and then, when we would go up during my school vacation in August, the bushes would be loaded with fruit. I’ve never had blueberry pancakes like the ones my mother would make with those blueberries since.
“Are you reading something?” Dad interrupts this entry. “No, writing. I’m writing about you.” I read him the previous paragraph. “There’s no garden there at all anymore,” he says. “The blueberry bushes are there, they just need work.” “They probably need a lot of pruning.” And I wish I had paid more attention when I was younger so that I could take up the yearly ritual. I have no idea how to prune a blueberry and he can’t teach me now.
Or can he? One way to find out. “Dad, how do you know where to prune a blueberry?” “Did I ever know how to prune blueberries?” “You did it every year.” “Until when?” “Maybe five or six years ago?” I’m not really sure. “I haven’t been to Gloucester in decades.” “Dad, we were there in August. We go there a lot.” Even though I know a lot about the mind and how it works and what can go wrong, I am still sometimes stunned at how things can just disappear, as though they never happened. And here come the tears again.
Blueberries always make me think of Dad because there are two long rows of blueberry bushes in the backyard of our house in Gloucester, pretty much all that remains of the gardens and fruit trees that surrounded the house when Dad was growing up there. During my childhood, every year Dad would make a trip up there in the Spring to prune the blueberry bushes, and then, when we would go up during my school vacation in August, the bushes would be loaded with fruit. I’ve never had blueberry pancakes like the ones my mother would make with those blueberries since.
“Are you reading something?” Dad interrupts this entry. “No, writing. I’m writing about you.” I read him the previous paragraph. “There’s no garden there at all anymore,” he says. “The blueberry bushes are there, they just need work.” “They probably need a lot of pruning.” And I wish I had paid more attention when I was younger so that I could take up the yearly ritual. I have no idea how to prune a blueberry and he can’t teach me now.
Or can he? One way to find out. “Dad, how do you know where to prune a blueberry?” “Did I ever know how to prune blueberries?” “You did it every year.” “Until when?” “Maybe five or six years ago?” I’m not really sure. “I haven’t been to Gloucester in decades.” “Dad, we were there in August. We go there a lot.” Even though I know a lot about the mind and how it works and what can go wrong, I am still sometimes stunned at how things can just disappear, as though they never happened. And here come the tears again.
Wednesday, January 21, 2009
1/21/09
I am so torn - I got a notice in the mail reminding me that I have until Feb. to decide whether I am going to sculpt this spring. I haven’ t been doing any sculpting this fall – instead of going to the studio on my Wednesdays off, I’ve been spending Wednesday evenings with Dad. Sculpting is really important to me – when I’m not doing it I can feel it both emotionally and physically, in my hands – it’s hard to explain. It’s like my hands miss the feel of the clay.
Dad would hate to be the reason I wasn’t sculpting – he was always really supportive of my artwork. He used to offer to support me while I took a year off and just made art, but I was always really involved at one job or another and never felt like I could just drop everything and do that.
But since I work evenings, Wednesday is the only time I can really spend time with him during the week. Marie/Obama is with him until 4pm, so he doesn’t need company as much in the afternoon, before I go to work. I’m already spending most of the weekend with him, before work on Saturday, and when I’m off on Sundays, but it never feels like enough. He’s so happy when I show up – it’s always a surprise to him, even though I follow a regular schedule – and he always thanks me for coming, in that formal way of his. Today he said "I'm very, very happy you turned out, I was in an awful, awful mood."
Mostly, I’m just really afraid of being left with regrets when he’s gone – it’s been ten years since my mother died and I still have moments when I wish I had done things differently, especially regarding her last hospitalization. If I had known she was dying, I wouldn’t have let them keep her in the hospital, where she was so uncomfortable.
Dad would hate to be the reason I wasn’t sculpting – he was always really supportive of my artwork. He used to offer to support me while I took a year off and just made art, but I was always really involved at one job or another and never felt like I could just drop everything and do that.
But since I work evenings, Wednesday is the only time I can really spend time with him during the week. Marie/Obama is with him until 4pm, so he doesn’t need company as much in the afternoon, before I go to work. I’m already spending most of the weekend with him, before work on Saturday, and when I’m off on Sundays, but it never feels like enough. He’s so happy when I show up – it’s always a surprise to him, even though I follow a regular schedule – and he always thanks me for coming, in that formal way of his. Today he said "I'm very, very happy you turned out, I was in an awful, awful mood."
Mostly, I’m just really afraid of being left with regrets when he’s gone – it’s been ten years since my mother died and I still have moments when I wish I had done things differently, especially regarding her last hospitalization. If I had known she was dying, I wouldn’t have let them keep her in the hospital, where she was so uncomfortable.
Dad at Pride
Samantha Box just sent me this fabulous picture she took of Dad at Pride two years ago. I marched, but it was too far for Dad so Rev Pat hoisted him onto the Metropolitan Community Church float and he rode the whole way, waving at the crowds on the sidewalk.Dad actually took me to my very first gay pride march - it was 1976, and I was still in a stroller!!! I don't remember it, of course, but Dad says it was very small, only a couple blocks long, and that, in those days before gay families were common, everyone was amazed to see a small child in the parade.
Monday, January 19, 2009
Transcontinental Voyage
Dad’s friend Dick, who went to high school with him in Gloucester and now lives in San Diego, has sent an invitation – or maybe it should be called a command - for Dad to come visit him. In his letter, he says “we should be able to arrange something that would be interesting, instructive, and morally edifying” – quite a tall order for a vacation!
Last time we went to visit, Dad and I went by plane, but this time Dad wants to make a “transcontinental voyage” by train. I can’t afford to take the time off, but Brianna and Kate S. are going to do it. Yesterday we started working on figuring out the details – we’re going to reserve adjoining bedrooms on the train so that they can keep a close eye on Dad. Once they get to San Diego, they’ll stay in the “hospitality room” at Dick’s assisted living residence.
Visiting Dick was an interesting experience – out since the 1940s, Dick was in love with Dad and followed him each time Dad switched colleges, so they both wound up at Bard. He still gets really excited about seeing Dad – once, when Dick was still well enough to travel, we were all in Gloucester at the same time, and Dick, seeing a rental car in the driveway of our house, decided to stop by for a visit. As Dad climbed up the porch stairs, Dick rose from his chair and came hobbling towards us, bellowing “Addiiissssoooon!” in a shaky tenor.
Dad has travelled cross-country by both train and bus a number of times. The first time was in the early 1950s, when a group of his friends decided that he was loafing around too much and applied to graduate school in his name and then informed him that he has 3 weeks to get to Oregon to start work on his M.A.!!! In those days, the bus had no bathroom, so it stopped a lot, and Dad smoked marijuana at every stop. He ran out about three hours before arriving, and never smoked it again.
Last time we went to visit, Dad and I went by plane, but this time Dad wants to make a “transcontinental voyage” by train. I can’t afford to take the time off, but Brianna and Kate S. are going to do it. Yesterday we started working on figuring out the details – we’re going to reserve adjoining bedrooms on the train so that they can keep a close eye on Dad. Once they get to San Diego, they’ll stay in the “hospitality room” at Dick’s assisted living residence.
Visiting Dick was an interesting experience – out since the 1940s, Dick was in love with Dad and followed him each time Dad switched colleges, so they both wound up at Bard. He still gets really excited about seeing Dad – once, when Dick was still well enough to travel, we were all in Gloucester at the same time, and Dick, seeing a rental car in the driveway of our house, decided to stop by for a visit. As Dad climbed up the porch stairs, Dick rose from his chair and came hobbling towards us, bellowing “Addiiissssoooon!” in a shaky tenor.
Dad has travelled cross-country by both train and bus a number of times. The first time was in the early 1950s, when a group of his friends decided that he was loafing around too much and applied to graduate school in his name and then informed him that he has 3 weeks to get to Oregon to start work on his M.A.!!! In those days, the bus had no bathroom, so it stopped a lot, and Dad smoked marijuana at every stop. He ran out about three hours before arriving, and never smoked it again.
Sunday, January 18, 2009
1/18/08
Sometimes I feel like Alzheimer’s must be contagious. After spending a while with Dad, I start to feel - and act – spacey. Tonight I got dinner on the table, but then I threw together a batch of cookies and stuck them in the oven and it wasn’t until the smoke detector started screaming that I realized I had left out the flour! What a mess – pools of melted, smoky sugar, butter and chocolate adhered to both cookie sheets and an apartment full of smoke.
I had to move Dad from his rocker to the couch so he wouldn’t get snowed on when I opened the window. He never sits on the couch and between the alarm and his new position, he got pretty discombobulated. Even once he was back in his chair, he kept asking “Where am I?” “At the dining room table, Dad.” “Is this the end of the apartment?” “Yes, the street is right out the window.” “Is this the end of the apartment?” “Yes, that’s the street out there.” Over and over. I gave him some green tea and turned on the country music channel so that he can nod his head and tap his feet to the music, and he seems to be settling down.
Today he asked me “Is it possible that you’re my father?” I don’t know where that came from, but I just said, “No, you’re my Dad, Dad.”
Other than that, he’s worrying a lot about Obama – the real one, not his housekeeper. He says “I hope nobody shoots that kid.” “The FBI and the Secret Service are protecting him, Dad.” “But he’s our first non-white president.” It’s a good point.
I had to move Dad from his rocker to the couch so he wouldn’t get snowed on when I opened the window. He never sits on the couch and between the alarm and his new position, he got pretty discombobulated. Even once he was back in his chair, he kept asking “Where am I?” “At the dining room table, Dad.” “Is this the end of the apartment?” “Yes, the street is right out the window.” “Is this the end of the apartment?” “Yes, that’s the street out there.” Over and over. I gave him some green tea and turned on the country music channel so that he can nod his head and tap his feet to the music, and he seems to be settling down.
Today he asked me “Is it possible that you’re my father?” I don’t know where that came from, but I just said, “No, you’re my Dad, Dad.”
Other than that, he’s worrying a lot about Obama – the real one, not his housekeeper. He says “I hope nobody shoots that kid.” “The FBI and the Secret Service are protecting him, Dad.” “But he’s our first non-white president.” It’s a good point.
Saturday, January 17, 2009
1/17/09
Dad is very formal with his cat, Kristen. She’s a senior citizen, like him, and she knows she has to remind him to feed her. In the morning she meows and scratches at his bedroom door, and in the evening she rubs against his legs. She was doing it the other day and he said, “I’ll be with you in a moment, Cat.” A few years ago, he made a sign on a piece of cardboard and posted it on his bedroom door, at cat eye level, about 8” off the floor. In big, black letters it read “Cats: No Entry.” The cat ignored it.
Today, on the phone with Kate S., Dad accidentally referred to me as her “kid”. When she corrected him with “best friend”, he said "my English is getting sort of shoddy, you know. I can’t think of the right words. I don’t know what it’s going to be like in one or two years. Maybe I won’t be able to talk at all.”
Watching me type this, he says “Speed. Jesus Christ. Holy mother of shit. I’ve never seen anyone type so fast.” “Are you writing a letter?” “No, a blog.” “What block?” “No, dad, a blog, it’s kind of like a journal, but it’s on the internet and people can read it.” “What would you have them read?” “It’s about you, Dad.” “I’m worried.” “Why are you worried?” “You must be writing bad things about me.” “No, Dad, listen to this,” and I read him the first paragraph of this entry. He laughed.
Today, on the phone with Kate S., Dad accidentally referred to me as her “kid”. When she corrected him with “best friend”, he said "my English is getting sort of shoddy, you know. I can’t think of the right words. I don’t know what it’s going to be like in one or two years. Maybe I won’t be able to talk at all.”
Watching me type this, he says “Speed. Jesus Christ. Holy mother of shit. I’ve never seen anyone type so fast.” “Are you writing a letter?” “No, a blog.” “What block?” “No, dad, a blog, it’s kind of like a journal, but it’s on the internet and people can read it.” “What would you have them read?” “It’s about you, Dad.” “I’m worried.” “Why are you worried?” “You must be writing bad things about me.” “No, Dad, listen to this,” and I read him the first paragraph of this entry. He laughed.
Tuesday, January 13, 2009
1/12/09
While we were at Dad's on sunday, he had a diarrhea attack and got into a mess. I had really wanted to go to a meeting about the Gaza situation, but, of course, I couldn't leave him like that. All my other selves, including my activist self, keep getting elbowed out of the way by my daughter self. As I cleaned up, Dad said "you're a good piece of people." After I helped him with his bath and we got him bundled up in his warm, soft Mohonk cardigan, he said "You saved my life. You deserve a medal." "You would have survived, Dad, you would have just been messy." "Indeed."
Yesterday, I came downstairs to find it raining in my kitchen - a major plumbing disaster. My first instinct was to call Dad - that's what my mother always did in these situations. But the reality is, he can't help with stuff anymore. I'm on my own.
I really felt it while I was sick - especially on friday, when I was home alone, going in and out of those fever dreams. When I was little until what seems like just a few years ago, if I was sick Dad would come over - he never worried about getting sick himself, he's always been really tough. Back then, Coliseum Books was on 57th St., on the way from Dad's house to the subway, and he would always get a couple of books to console me.
I don't know if it was the english teacher in him trying to make sure I was interested in reading or what, but, in our family, books are what food is in other families - bribe, reward, gift, apology, thank you . . . . everything from the long line for tickets to Shakespeare in the Park (excruciating for a child) to a painful trip to the orthodontist involved a trip to the Coliseum. On holidays, one package always contained a Coliseum gift certificate, carefully packed in a cigar box or a jar to confuse the recipient. I still feel a surge of anger when I see that bank in the space where the Coliseum should be.
Once, when I had the flu, my glasses broke and I called Dad in a panic. He came and took away the broken glasses and had the lenses put in a new frame - but, since I was stuck in bed, he had to choose the frames. I have no idea how he chose, but the pair he got were bright red, definitely not something I would have chosen! But I wore them until they broke.
Yesterday, I came downstairs to find it raining in my kitchen - a major plumbing disaster. My first instinct was to call Dad - that's what my mother always did in these situations. But the reality is, he can't help with stuff anymore. I'm on my own.
I really felt it while I was sick - especially on friday, when I was home alone, going in and out of those fever dreams. When I was little until what seems like just a few years ago, if I was sick Dad would come over - he never worried about getting sick himself, he's always been really tough. Back then, Coliseum Books was on 57th St., on the way from Dad's house to the subway, and he would always get a couple of books to console me.
I don't know if it was the english teacher in him trying to make sure I was interested in reading or what, but, in our family, books are what food is in other families - bribe, reward, gift, apology, thank you . . . . everything from the long line for tickets to Shakespeare in the Park (excruciating for a child) to a painful trip to the orthodontist involved a trip to the Coliseum. On holidays, one package always contained a Coliseum gift certificate, carefully packed in a cigar box or a jar to confuse the recipient. I still feel a surge of anger when I see that bank in the space where the Coliseum should be.
Once, when I had the flu, my glasses broke and I called Dad in a panic. He came and took away the broken glasses and had the lenses put in a new frame - but, since I was stuck in bed, he had to choose the frames. I have no idea how he chose, but the pair he got were bright red, definitely not something I would have chosen! But I wore them until they broke.
Saturday, January 10, 2009
In which Dad learns about the blog
Today, on the phone, Dad told Kate S. “I suddenly went blind again.” Later, he said to me, “I can’t see you, you’re just a blur,” “That’s probably a good thing, Dad, I’m wearing a really ugly shirt.” “I wouldn’t care if you were bare-ass naked.”
Dad knows my job has changed, but he doesn’t really understand it. He says, “you’re not writing so much, anymore, right?”
“I don’t write grants any more, but I’m doing some other writing of my own, and do you know what it’s about? It’s about you,”
“Uh-oh.” Extended pause.
“That shuts me up.” Another pause.
“Am I a character? I am, I guess.”
The quotable Dad:
1) On my illness: “how long do these germs live?”
2) As I was leaving: “I’m getting pretty dotty.” “I know, Dad.” “Dotty Bray, Naughty Bray.”
3) On a phone call from Charlie: “You certainly had a long conversation with Charlie. You didn’t say anything at all.” (Charlie has a lot to say, lol).
4) On the future, “I don’t think I’m going to live more than another 10 or 15 years.” He's 85!!!
Dad knows my job has changed, but he doesn’t really understand it. He says, “you’re not writing so much, anymore, right?”
“I don’t write grants any more, but I’m doing some other writing of my own, and do you know what it’s about? It’s about you,”
“Uh-oh.” Extended pause.
“That shuts me up.” Another pause.
“Am I a character? I am, I guess.”
The quotable Dad:
1) On my illness: “how long do these germs live?”
2) As I was leaving: “I’m getting pretty dotty.” “I know, Dad.” “Dotty Bray, Naughty Bray.”
3) On a phone call from Charlie: “You certainly had a long conversation with Charlie. You didn’t say anything at all.” (Charlie has a lot to say, lol).
4) On the future, “I don’t think I’m going to live more than another 10 or 15 years.” He's 85!!!
Fever Dreams 1/9/08
Fever Dreams
(1) I am at my own heterosexual, orthodox wedding (?!!!). Everyone, including me is very happy, and lots of people are dancing. Dad joins in the dancing, much more agile than he is in reality. Suddenly I notice that he is turning an odd color. Just as I mention this to my new husband, he falls to the floor dead.
(2) It is a more day-to-day setting with me and Dad. Suddenly he starts to choke. I’m trying to help him, or call for help, but my arms are tangled in sheets or blankets and I can’t get them free. I wake up struggling. The cats are scared.
(1) I am at my own heterosexual, orthodox wedding (?!!!). Everyone, including me is very happy, and lots of people are dancing. Dad joins in the dancing, much more agile than he is in reality. Suddenly I notice that he is turning an odd color. Just as I mention this to my new husband, he falls to the floor dead.
(2) It is a more day-to-day setting with me and Dad. Suddenly he starts to choke. I’m trying to help him, or call for help, but my arms are tangled in sheets or blankets and I can’t get them free. I wake up struggling. The cats are scared.
Monday, January 5, 2009
1/5/09
Sunday was a bad, sad Dad day. Kate S. and I arrived at Dad's at 4:30pm and found him very agitated, standing up and telling Charlie over the phone that he was "lost". I took the phone and told him to sit down, but he said "I can't find a chair" even though there was one in front of him, and one to either side. I led him to the rocker and brought him coffee and a snack, but he was still very upset.
"It's a miracle! You're here!" he kept saying. "Is it 4:30am? Why is it so dark? I just went blind, bang! Has that ever happened to you? Bang, totally blind."
"It's 4:30 in the afternoon"
"really? where have I been? is it 4:30 in the morning?"
"no, it's 4:30 in the afternoon."
"I thought that was a long night. Is it really 4:30 in the afternoon? I just wanted some water and then I was going to go back to bed to die."
"it's 4:30pm, here's your water,"
"do people just go blind like that? bang? have you ever heard of that?"
"It can happen," says Kate S.
"it's like permanent night. It is really 4:30 in the afternoon?"
"it's 5pm now."
Good thing he can't see me cry.
I've learned to cry silently. It started when he was diagnosed. I was at Ferkauf then, taking Psy.D. classes, and the more I learned about working brains, the more I started noticing that Dad was "off" - the word-finding problems, repeating himself, leaving the stove on . .. I knew what I was seeing, but I wanted to believe it was something, anything else. I took him to the neurologist, and they did their tests, and when the doctor was explaining his diagnosis to him, the way we were sitting in his cramped office, the doctor could see my face but Dad couldn't and the tears were just soundlessly pouring down.
That was one of the reasons I left Ferkauf.
Later
Dad's also still having trouble with the New Year. "What's today's date?" he asked Kate S. yesterday. "January 4, 2009." "January, 2004?" "No, January 4th, 2009" "When will it be 2010?" "Next January." "Next week?" "No, a whole year from now, after we go through christmas again." "So it's 1009?" "That was a thousand years ago!" "It's not 1009?" "No, that was a long, long time ago."
"What's this?" he asked, peering at a pan cooling on the table. "Brownies," Kate S. told him, "they're going to get cut up and served with ice cream." "oooooooooh," he said. He got two.
"It's a miracle! You're here!" he kept saying. "Is it 4:30am? Why is it so dark? I just went blind, bang! Has that ever happened to you? Bang, totally blind."
"It's 4:30 in the afternoon"
"really? where have I been? is it 4:30 in the morning?"
"no, it's 4:30 in the afternoon."
"I thought that was a long night. Is it really 4:30 in the afternoon? I just wanted some water and then I was going to go back to bed to die."
"it's 4:30pm, here's your water,"
"do people just go blind like that? bang? have you ever heard of that?"
"It can happen," says Kate S.
"it's like permanent night. It is really 4:30 in the afternoon?"
"it's 5pm now."
Good thing he can't see me cry.
I've learned to cry silently. It started when he was diagnosed. I was at Ferkauf then, taking Psy.D. classes, and the more I learned about working brains, the more I started noticing that Dad was "off" - the word-finding problems, repeating himself, leaving the stove on . .. I knew what I was seeing, but I wanted to believe it was something, anything else. I took him to the neurologist, and they did their tests, and when the doctor was explaining his diagnosis to him, the way we were sitting in his cramped office, the doctor could see my face but Dad couldn't and the tears were just soundlessly pouring down.
That was one of the reasons I left Ferkauf.
Later
Dad's also still having trouble with the New Year. "What's today's date?" he asked Kate S. yesterday. "January 4, 2009." "January, 2004?" "No, January 4th, 2009" "When will it be 2010?" "Next January." "Next week?" "No, a whole year from now, after we go through christmas again." "So it's 1009?" "That was a thousand years ago!" "It's not 1009?" "No, that was a long, long time ago."
"What's this?" he asked, peering at a pan cooling on the table. "Brownies," Kate S. told him, "they're going to get cut up and served with ice cream." "oooooooooh," he said. He got two.
Saturday, January 3, 2009
1/3/08
Today, I made the mistake of giving Dad a boston cream donut. I warned him it was sticky, but I wasn’t expecting him to try to break it into bite-sized pieces!!!
Note To Self: Do not give Dad a filled donut unless you are also prepared to give him a bath.
Dad’s quote of the day “I’m really quite curious as to how much I’ve lost my ability to think.”
I never know what to say when he makes remarks like this – during the “bad years” of the AIDS epidemic, when it seemed like everyone was dying, I learned to be as direct as possible with sick people, even – or especially – about hard stuff, and that’s a philosophy that served me well over the years. Even last year, I was in the recovery room when Bob Kohler came out of surgery and the doctor started talking to him in medical terms, and Bob looked so confused that I just said to him, point blank, “Bob, he says you have cancer and it’s not curable. If you choose to have chemo, it will only be to make you more comfortable.” But Bob’s mind wasn’t affected – I knew he understood me. With Dad, I never know what he can understand and/or retain.
When I got to Dad’s apartment today, I heard a male voice droning on his bedroom. He was listening to one of his recorded books from the Library of Congress – I was relieved because he used to listen to them all the time, but he hasn’t been recently and I was afraid he’d forgotten how to operate the machine. It turns out that he isn’t enjoying the books as much as he used to. He says “I want something simpler than I used to be able to handle, but I don’t want to listen to baby stuff or silly stuff.” I don’t know how we communicate that to the library people – I know there’s some way to tell them what topics someone’s interested in – Dad’s signed up for history and archaeology and I don’t know what else, but I don’t know if there’s a way of specifying the reading level or degree of complexity. I guess I can call them and see. He can’t be the only one of their clients to experience this.
Note To Self: Do not give Dad a filled donut unless you are also prepared to give him a bath.
Dad’s quote of the day “I’m really quite curious as to how much I’ve lost my ability to think.”
I never know what to say when he makes remarks like this – during the “bad years” of the AIDS epidemic, when it seemed like everyone was dying, I learned to be as direct as possible with sick people, even – or especially – about hard stuff, and that’s a philosophy that served me well over the years. Even last year, I was in the recovery room when Bob Kohler came out of surgery and the doctor started talking to him in medical terms, and Bob looked so confused that I just said to him, point blank, “Bob, he says you have cancer and it’s not curable. If you choose to have chemo, it will only be to make you more comfortable.” But Bob’s mind wasn’t affected – I knew he understood me. With Dad, I never know what he can understand and/or retain.
When I got to Dad’s apartment today, I heard a male voice droning on his bedroom. He was listening to one of his recorded books from the Library of Congress – I was relieved because he used to listen to them all the time, but he hasn’t been recently and I was afraid he’d forgotten how to operate the machine. It turns out that he isn’t enjoying the books as much as he used to. He says “I want something simpler than I used to be able to handle, but I don’t want to listen to baby stuff or silly stuff.” I don’t know how we communicate that to the library people – I know there’s some way to tell them what topics someone’s interested in – Dad’s signed up for history and archaeology and I don’t know what else, but I don’t know if there’s a way of specifying the reading level or degree of complexity. I guess I can call them and see. He can’t be the only one of their clients to experience this.
Friday, January 2, 2009
Time Marches On
Every now and then Dad drops his voice into the bass register and proclaims "Time marches on." Apparently a well-known radio announcer - Cronkite, maybe? - used to end every broadcast this way.
I found dad discombobulated when I went to see him on wednesday - he was searching for a pen to take down a number Charlie was giving him, and he couldn't find one that worked. I think what actually happened was that he can no longer see what he is writing and so he thinks the pen is not writing when it is. I called Charlie because I couldn't imagine what number he was trying to give Dad - turned out it was MY number. Oy.
Charlie is Dad's best friend, an octogenarian queen who lives in Florida. They met at Bard College in the early 1940s, and Charlie spent the school years teaching english and poetry at various colleges and spent his summers travelling all over the world. Now he's homebound after several strokes and spends most of his time on the telephone - he keeps Dad on for hours at a time!
Dad on New Year's: "So it's turning 2009?" "yes, Dad." "What will it be next year?" "2010." "And the year after that?" "2011." "And 10 years after that?" "2021." "So when will it be 3000?" "In about a thousand years." "We won't be around then." "No, we won't."
I found dad discombobulated when I went to see him on wednesday - he was searching for a pen to take down a number Charlie was giving him, and he couldn't find one that worked. I think what actually happened was that he can no longer see what he is writing and so he thinks the pen is not writing when it is. I called Charlie because I couldn't imagine what number he was trying to give Dad - turned out it was MY number. Oy.
Charlie is Dad's best friend, an octogenarian queen who lives in Florida. They met at Bard College in the early 1940s, and Charlie spent the school years teaching english and poetry at various colleges and spent his summers travelling all over the world. Now he's homebound after several strokes and spends most of his time on the telephone - he keeps Dad on for hours at a time!
Dad on New Year's: "So it's turning 2009?" "yes, Dad." "What will it be next year?" "2010." "And the year after that?" "2011." "And 10 years after that?" "2021." "So when will it be 3000?" "In about a thousand years." "We won't be around then." "No, we won't."
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