Last night passed without incident. Not a single one.
I think she and I slept like babies. I made it all the way through, 9 pm to 5 am. After getting barely 1 the night before.
My father is getting out of the hospital today, and some neighbors will cover the gap. Plans are in the works to get a home health aide on standby for such things, starting with bringing them in to get my mother acclimated to a new person in the house to take care of a few things like bathing assistance.
Breakfast in a half-hour.
Sunday, March 22, 2009
Saturday, March 21, 2009
Seeing Bees
Just now, while watching "Leave It To Beaver." She swears a bunch of bees were flying around by the window next to the television. When she sat up, she said they must have flown away.
After a mostly good morning.
After a mostly good morning.
Up All Night
My mother kept getting up every 15 minutes, going out to the living room, and then going back to bed. Nothing like the previous incident, thank God. But sometimes she'd remember her walker, other times not. My ears started tuning themselves, in half-sleep, to the sound of her getting out of bed through the walls. And when she'd forego the walker, I'd wait for the sound of the shuffle-slide as she dragged one foot, hugging the walls and using the corners of furniture to guide her in and out of rooms. And when she remembered the walker, there'd be the loud banging sounds as she picked it up and moved it in front of her to get through tight spaces, hitting the dresser and footboard of the bed, and then the scrape of the plastic wheels and skids on the hardwood as she pushed it. She still doesn't know how to use it properly after being shown dozens of times.
She kept coming out and going back in, ostensibly waking up and falling back to sleep. But the sleep, if it was sleep at all, lasted only 15-20 minutes. Half the trips were to the bathroom, half were to go into the living room or kitchen for an unknown reason. Even though she gets very thirsty at night, she doesn't think to get a drink. And she refuses bottled water at her bedside, since she hates the taste of all water. And if it was there, or even her beloved 7-Up, she'd forget it was there anyway.
I counted six trips in all.
Each trip back, she stopped and asked me if I wanted something to eat. I said it was too early for breakfast and told her to go back to bed, which she did. This all happened between 2:00 and 4:45 am. I was sleeping in what seemed to be seven-minute stretches, feeling that eye-burn from lack of rest, laying on tenterhooks instead of sheets, dreading another midnight bug-hunt.
She then got up again and asked me why my car was at the end of the driveway, so close to the road, and I said it's okay, it only looks close when you look at it from the window. It's the angle, you see. No one's going to hit it.
Back to bed. 20 minutes later, up again, to the bathroom, and then opening my bedroom door on the way back to say something. This time, she told me she was just talking to a guy who asked if it was okay to park his car in our driveway, and she couldn't figure out why he needed to do that. And that she couldn't recognize him. She laughed; at this person, I guess, who had to use our driveway for some reason. Like why didn't he have his own driveway, or why couldn't he park somewhere else? From knowing it was my car scant minutes before to thinking it belonged to a mysterious stranger in need of a parking spot at 3:15 am.
I again told it was my car, and then she said okay and went back to bed. Ten minutes later, up again and the same exchange, down to the last detail for the most part. As if a tape in an old computer was running a damaged program in her head, mostly stuck on the same loop — until it received a jolt of new information that would cause it to change, albeit only slightly. It would loop again, but with a tiny difference based on what fragments of new data she was able to retain, or even get wrong. The stranger's car became my car and then my father's car, which begat a new conversation about where he was if his car was here. So I would remind her that the ambulance had taken him to the hospital a few nights ago and he was not back yet. I stepped outside of the situation, brought up my clinico-objective shields, marveling at how this diseased brain was working in this terribly impaired state, trying to run processes that it couldn't, trying to order things that it couldn't — getting some right, but most wrong. Trying to insert new information into the thought-stream but never in the right place or accurately.
And running beneath it all, paranoia and fear of the unknown. Such an insidious disease, I thought, turning things known into things unknown in timescales as short as a few minutes. No matter how many times I explained the car was mine in the moment, her mind reverted almost as soon as she'd finished acknowledging what I told her, holding onto a sense that it was a stranger's.
I believe that on some level, her fear of someone strange outside or even inside her house in 2009 is surfacing has its roots in the fact that her family lost their farm to the Russians at the end of World War II, some 65 years ago. It happened rather perfunctorily. A handbill, in German, was placed on the door by an official, naming it Soviet property (her family, the Hanels, were Sudetendeustch, living in what is now the Czech Republic), and they had to evacuate, taking only what they could carry, within 24 hours. Just like that. They were among some 2.6 million Germans sent packing in 1945-46 whose homes were handed over to the Russians as war reparations, to be used for the resettlement of Czechs displaced by the Nazis (who were eager to become good little Communists in exchange for free houses and working farms) and Russians who'd suffered at the hands of the Wehrmacht or Waffen SS in 1941-43. The disease seems to rewire such memories to the present as it ravages brain tissue. As it destroys once pristine brain structures, time gets all mixed up in the head. Events experienced in 1945 blend with tonight.
The strange guy who parked his car in the driveway?
Not a hallucination at all ... and not a Russian official from her nightmares of 1945 either.
It was me. Her son.
My fear is that she will try and go outside to deal with this (or another, future) imaginary interloper that she (actually, the illness) has conjured in her head from broken bits of memory, and hurt herself. With no sense of time, I could easily see her doing this in the dark, not even thinking, like you and I would if the situation were as real to us as it is to her, to turn on a porch light, or realize that she's in a nightgown sans slippers and it's 29 degrees outside. The woman who religiously reminded me to put on a coat and hat against the cold cannot even tell herself the same. The simplest "thought-mechanisms" we take for granted simply do not work. There is no exercising of logic or thinking-in-sequence. Planning is non-existent. Everything is reactionary and fragmented so that the motivation of the previous 30 seconds has disappeared by the time the next 30 seconds starts. This is how we end up with 86-year-old women the middle of the street at midnight in their bedclothes.
The last eight hours have been an awful exposure to Alzheimer's in the trenches. No amount of reading or counseling can quite prepare you for how the dementia actually manifests as I've described.
I wonder: does it get worse at night? It seems so. (I'll have to research that.)
She kept coming out and going back in, ostensibly waking up and falling back to sleep. But the sleep, if it was sleep at all, lasted only 15-20 minutes. Half the trips were to the bathroom, half were to go into the living room or kitchen for an unknown reason. Even though she gets very thirsty at night, she doesn't think to get a drink. And she refuses bottled water at her bedside, since she hates the taste of all water. And if it was there, or even her beloved 7-Up, she'd forget it was there anyway.
I counted six trips in all.
Each trip back, she stopped and asked me if I wanted something to eat. I said it was too early for breakfast and told her to go back to bed, which she did. This all happened between 2:00 and 4:45 am. I was sleeping in what seemed to be seven-minute stretches, feeling that eye-burn from lack of rest, laying on tenterhooks instead of sheets, dreading another midnight bug-hunt.
She then got up again and asked me why my car was at the end of the driveway, so close to the road, and I said it's okay, it only looks close when you look at it from the window. It's the angle, you see. No one's going to hit it.
Back to bed. 20 minutes later, up again, to the bathroom, and then opening my bedroom door on the way back to say something. This time, she told me she was just talking to a guy who asked if it was okay to park his car in our driveway, and she couldn't figure out why he needed to do that. And that she couldn't recognize him. She laughed; at this person, I guess, who had to use our driveway for some reason. Like why didn't he have his own driveway, or why couldn't he park somewhere else? From knowing it was my car scant minutes before to thinking it belonged to a mysterious stranger in need of a parking spot at 3:15 am.
I again told it was my car, and then she said okay and went back to bed. Ten minutes later, up again and the same exchange, down to the last detail for the most part. As if a tape in an old computer was running a damaged program in her head, mostly stuck on the same loop — until it received a jolt of new information that would cause it to change, albeit only slightly. It would loop again, but with a tiny difference based on what fragments of new data she was able to retain, or even get wrong. The stranger's car became my car and then my father's car, which begat a new conversation about where he was if his car was here. So I would remind her that the ambulance had taken him to the hospital a few nights ago and he was not back yet. I stepped outside of the situation, brought up my clinico-objective shields, marveling at how this diseased brain was working in this terribly impaired state, trying to run processes that it couldn't, trying to order things that it couldn't — getting some right, but most wrong. Trying to insert new information into the thought-stream but never in the right place or accurately.
And running beneath it all, paranoia and fear of the unknown. Such an insidious disease, I thought, turning things known into things unknown in timescales as short as a few minutes. No matter how many times I explained the car was mine in the moment, her mind reverted almost as soon as she'd finished acknowledging what I told her, holding onto a sense that it was a stranger's.
I believe that on some level, her fear of someone strange outside or even inside her house in 2009 is surfacing has its roots in the fact that her family lost their farm to the Russians at the end of World War II, some 65 years ago. It happened rather perfunctorily. A handbill, in German, was placed on the door by an official, naming it Soviet property (her family, the Hanels, were Sudetendeustch, living in what is now the Czech Republic), and they had to evacuate, taking only what they could carry, within 24 hours. Just like that. They were among some 2.6 million Germans sent packing in 1945-46 whose homes were handed over to the Russians as war reparations, to be used for the resettlement of Czechs displaced by the Nazis (who were eager to become good little Communists in exchange for free houses and working farms) and Russians who'd suffered at the hands of the Wehrmacht or Waffen SS in 1941-43. The disease seems to rewire such memories to the present as it ravages brain tissue. As it destroys once pristine brain structures, time gets all mixed up in the head. Events experienced in 1945 blend with tonight.
The strange guy who parked his car in the driveway?
Not a hallucination at all ... and not a Russian official from her nightmares of 1945 either.
It was me. Her son.
My fear is that she will try and go outside to deal with this (or another, future) imaginary interloper that she (actually, the illness) has conjured in her head from broken bits of memory, and hurt herself. With no sense of time, I could easily see her doing this in the dark, not even thinking, like you and I would if the situation were as real to us as it is to her, to turn on a porch light, or realize that she's in a nightgown sans slippers and it's 29 degrees outside. The woman who religiously reminded me to put on a coat and hat against the cold cannot even tell herself the same. The simplest "thought-mechanisms" we take for granted simply do not work. There is no exercising of logic or thinking-in-sequence. Planning is non-existent. Everything is reactionary and fragmented so that the motivation of the previous 30 seconds has disappeared by the time the next 30 seconds starts. This is how we end up with 86-year-old women the middle of the street at midnight in their bedclothes.
The last eight hours have been an awful exposure to Alzheimer's in the trenches. No amount of reading or counseling can quite prepare you for how the dementia actually manifests as I've described.
I wonder: does it get worse at night? It seems so. (I'll have to research that.)
Friday, March 20, 2009
Hallucinations
Tonight, during two separate periods, my mother insisted black bugs were all over the house.
The first incident, today, from about 10:45 to 10:50 pm, occurred three hours after she had gone to bed. She got up, went to the bathroom, and then I heard her shuffling through the closed door to my room, raising her voice to a strange pitch. (About an hour before, she had gotten up and suddenly opened the door to my room and asked me who I was, and then after I identified myself, she asked when Dad was coming home.)
As an aside, before I go on, I am thinking that everything that happened tonight may have something to do with the fact that my father has been in the local hospital since Wednesday night (it's now Friday night) and her world/routine has been disrupted. Maybe it just took 48 hours of him being absent for it to register, I don't know. He developed a nasty urinary tract infection that I hope they can get under control so he can be released tomorrow. He is, naturally, worried about her rather than himself, even though I am here.
I got out of bed, and crossed to her room and asked what was going on. She said there were all "these little black things" crawling, moving, and flying around the room. I noticed there was a shadow cast by the over-long chain attached to a ceiling fan that was throwing moving shadows onto the blanket on the bed, because as she swung her hands wildly at whatever she was seeing, she would hit the chain. The shadow of the moving chain, I thought, might just look like bugs to her eyes. She dismissed that, and was just on the verge of becoming super-agitated, so I told her that there was also a lot of black sock lint stuck to the little carpet by the bed and the blanket, and in the low light, suggested they looked like bugs.
I calmed her down (or so I thought), and she got back under the covers, and said she was going to sleep. I went back in my room, closed the door (but did not close it completely). I lay there stunned. The sight of one's 86-year-old mother swinging at things she says she can see but you cannot is truly upsetting.
About 20 minutes later, I heard her in the hall again, moving around (I was watching "The Princess Bride," on Bravo, and had the volume quite low, plus the door was only slightly closed).
She goes to the bathroom frequently, so I listened to see if that's all it was. Next, I heard her voice rising in volume. I got up and entered the hall. She'd turned on the living room and kitchen overhead lights, and was standing in the middle of the kitchen yelling about all the little black bugs moving everywhere. She didn't really call them bugs, now that I think about it. She called them "things she didn't like that were in her house." There was nothing there. I did recall a time when I was with her and my Dad was in the hospital when she insisted there was a woman sitting at the kitchen table, but I was able to convince her there wasn't.
She swayed around the kitchen (her balance is very poor), screaming that she was going to kill all of them. She asked me if I saw them, and I said no, and she got angry and frustrated, interrupting herself when she'd catch sight of more of them, and resume stamping her feet. I said that I could only see a few little specks of dirt from people's shoes, but they weren't moving (I thought maybe by stomping around she was causing them to blow about, but the few of them there were weren't moving at all). I was deathly afraid she was going to fall and hurt herself. I was wondering if this happened without no one around, how would it play out?
She then took an envelope from the pile of unopened mail on the kitchen table with one hand, and bracing herself with the other hand on a chair, bent completely over and began swatting the floor violently with it, insisting the things were moving around her feet everywhere. And even in front of me, and on to me. She kept one hand on the chair, and swatted the floor all around her bare feet, all the time screaming that I must be blind not to see "them" going up the refrigerator door, or across the front of the stove, or the door, or the wall, or up my T-shirt. She tried to spin around fast enough to follow whatever it was she was seeing, but kept saying to herself that she wasn't fast enough to catch them. "I can't catch them, I can't catch them."
I tried to give credence to the situation, and said that maybe she was seeing something related to her recent eye surgery (I had been giving her drops periodically during the day in my father's absence), and she didn't buy it, simply stating that the things were all over the place, mostly the floor, but also on the walls and refrigerator door, over and over again. I thought maybe she was seeing flashes of light, common following cataract surgery in my experience (though the surgery was 6 weeks before and I doubted that was the cause).
I asked her to point to some, and she did. Right here! No, over there! Right there! The floor was absolutely bare whereever she pointed. I said that I understand she sees them, but I could not. She said "I'm not that dumb" over and over again.
She was about to going looking for a fly swatter, and had trouble remembering the word for it (but I knew what she meant), and just sort of gave up the idea and went back to dealing with her tormentors with the envelope.
After smacking the floor and table top with the envelope for about two more minutes, and yelling, she was out of breath, and sat down in the chair, in her nightgown, huffing and puffing. She continued to point at these flies, or dust motes, or whatever it was she was seeing for another few minutes.
I said that although I couldn't see them, I would check the rooms for anything strange. I said my eyes were tired. I didn't want her to think I thought she was crazy. She just glared at me with these wild eyes. The look was in stark contrast to the dead glaze I caught in her eyes that had saddened me just a few hours before as she watched TV with a detachment that if you study it too closely for too long becomes unbearable to watch. Because you know that the look is from her brain shutting down in increments, a little bit each minute. The anger, perhaps subconsciously, I think, is the mind's attempt to rage against its mutinous parts on some level.
I contemplated calling an ambulance. I wish I had a Zoloft in my bag, perhaps untaken and forgotten from a recent flight.
Then she suddenly said that she had to go to the bathroom again, and I said I would check the kitchen again and see if I could see them (trying to give her a sense that I believed her and that it was me who had the problem). She muttered that I must be blind as she shuffled off to the bathroom. She finished, flushed, and then simply went into her bedroom and slammed the door. I could think of nothing except the tone in her voice; it was the way one talks to a stranger, the way a paranoid person refers to the rest of the world. And that was perhaps the scariest thing of all.
I walked to the end of the hall and stood between her door and mine and listened as she muttered angrily for several more minutes about the "filthy things" and how she's not that dumb that she would imagine them. I stood there for what seemed like 10 more minutes until she gradually quieted down. It was as if the forgetting was kicking in, erasing the entire thing from her mind. At that moment, I was thankful for it. I knew she wouldn't recall the incident at all, and resolved not to bring it up to her.
I came out to the living room after hearing nothing more, to create this blog out of barely suppressed panic (takes all of three minutes). I felt I had to (b)log this event. It is perhaps the scariest behavior I have ever seen in the 5-6 years my mother has been suffering overtly from this disease.
I doubt if I will sleep much tonight. I hope she does.
I am extremely scared about this entire episode, and when I visit my father tomorrow in the hospital I will ask him if he has experienced anything like it. He has said that she gets extremely angry and nasty to him in the evenings sometimes, and has no recollection of it the next morning. But he's not mentioned anything that got physical before.
Does it signal some horrible escalation of her dementia.
It has been quiet for about 45 minutes now, and I am afraid to move lest she hear me and get up and start all over again.
I will continue to record my and my Dad's experiences here (as much as he tells me). If I can find her neurologist's email address, I will send him the link, or give it to him on the phone.
The first incident, today, from about 10:45 to 10:50 pm, occurred three hours after she had gone to bed. She got up, went to the bathroom, and then I heard her shuffling through the closed door to my room, raising her voice to a strange pitch. (About an hour before, she had gotten up and suddenly opened the door to my room and asked me who I was, and then after I identified myself, she asked when Dad was coming home.)
As an aside, before I go on, I am thinking that everything that happened tonight may have something to do with the fact that my father has been in the local hospital since Wednesday night (it's now Friday night) and her world/routine has been disrupted. Maybe it just took 48 hours of him being absent for it to register, I don't know. He developed a nasty urinary tract infection that I hope they can get under control so he can be released tomorrow. He is, naturally, worried about her rather than himself, even though I am here.
I got out of bed, and crossed to her room and asked what was going on. She said there were all "these little black things" crawling, moving, and flying around the room. I noticed there was a shadow cast by the over-long chain attached to a ceiling fan that was throwing moving shadows onto the blanket on the bed, because as she swung her hands wildly at whatever she was seeing, she would hit the chain. The shadow of the moving chain, I thought, might just look like bugs to her eyes. She dismissed that, and was just on the verge of becoming super-agitated, so I told her that there was also a lot of black sock lint stuck to the little carpet by the bed and the blanket, and in the low light, suggested they looked like bugs.
I calmed her down (or so I thought), and she got back under the covers, and said she was going to sleep. I went back in my room, closed the door (but did not close it completely). I lay there stunned. The sight of one's 86-year-old mother swinging at things she says she can see but you cannot is truly upsetting.
About 20 minutes later, I heard her in the hall again, moving around (I was watching "The Princess Bride," on Bravo, and had the volume quite low, plus the door was only slightly closed).
She goes to the bathroom frequently, so I listened to see if that's all it was. Next, I heard her voice rising in volume. I got up and entered the hall. She'd turned on the living room and kitchen overhead lights, and was standing in the middle of the kitchen yelling about all the little black bugs moving everywhere. She didn't really call them bugs, now that I think about it. She called them "things she didn't like that were in her house." There was nothing there. I did recall a time when I was with her and my Dad was in the hospital when she insisted there was a woman sitting at the kitchen table, but I was able to convince her there wasn't.
She swayed around the kitchen (her balance is very poor), screaming that she was going to kill all of them. She asked me if I saw them, and I said no, and she got angry and frustrated, interrupting herself when she'd catch sight of more of them, and resume stamping her feet. I said that I could only see a few little specks of dirt from people's shoes, but they weren't moving (I thought maybe by stomping around she was causing them to blow about, but the few of them there were weren't moving at all). I was deathly afraid she was going to fall and hurt herself. I was wondering if this happened without no one around, how would it play out?
She then took an envelope from the pile of unopened mail on the kitchen table with one hand, and bracing herself with the other hand on a chair, bent completely over and began swatting the floor violently with it, insisting the things were moving around her feet everywhere. And even in front of me, and on to me. She kept one hand on the chair, and swatted the floor all around her bare feet, all the time screaming that I must be blind not to see "them" going up the refrigerator door, or across the front of the stove, or the door, or the wall, or up my T-shirt. She tried to spin around fast enough to follow whatever it was she was seeing, but kept saying to herself that she wasn't fast enough to catch them. "I can't catch them, I can't catch them."
I tried to give credence to the situation, and said that maybe she was seeing something related to her recent eye surgery (I had been giving her drops periodically during the day in my father's absence), and she didn't buy it, simply stating that the things were all over the place, mostly the floor, but also on the walls and refrigerator door, over and over again. I thought maybe she was seeing flashes of light, common following cataract surgery in my experience (though the surgery was 6 weeks before and I doubted that was the cause).
I asked her to point to some, and she did. Right here! No, over there! Right there! The floor was absolutely bare whereever she pointed. I said that I understand she sees them, but I could not. She said "I'm not that dumb" over and over again.
She was about to going looking for a fly swatter, and had trouble remembering the word for it (but I knew what she meant), and just sort of gave up the idea and went back to dealing with her tormentors with the envelope.
After smacking the floor and table top with the envelope for about two more minutes, and yelling, she was out of breath, and sat down in the chair, in her nightgown, huffing and puffing. She continued to point at these flies, or dust motes, or whatever it was she was seeing for another few minutes.
I said that although I couldn't see them, I would check the rooms for anything strange. I said my eyes were tired. I didn't want her to think I thought she was crazy. She just glared at me with these wild eyes. The look was in stark contrast to the dead glaze I caught in her eyes that had saddened me just a few hours before as she watched TV with a detachment that if you study it too closely for too long becomes unbearable to watch. Because you know that the look is from her brain shutting down in increments, a little bit each minute. The anger, perhaps subconsciously, I think, is the mind's attempt to rage against its mutinous parts on some level.
I contemplated calling an ambulance. I wish I had a Zoloft in my bag, perhaps untaken and forgotten from a recent flight.
Then she suddenly said that she had to go to the bathroom again, and I said I would check the kitchen again and see if I could see them (trying to give her a sense that I believed her and that it was me who had the problem). She muttered that I must be blind as she shuffled off to the bathroom. She finished, flushed, and then simply went into her bedroom and slammed the door. I could think of nothing except the tone in her voice; it was the way one talks to a stranger, the way a paranoid person refers to the rest of the world. And that was perhaps the scariest thing of all.
I walked to the end of the hall and stood between her door and mine and listened as she muttered angrily for several more minutes about the "filthy things" and how she's not that dumb that she would imagine them. I stood there for what seemed like 10 more minutes until she gradually quieted down. It was as if the forgetting was kicking in, erasing the entire thing from her mind. At that moment, I was thankful for it. I knew she wouldn't recall the incident at all, and resolved not to bring it up to her.
I came out to the living room after hearing nothing more, to create this blog out of barely suppressed panic (takes all of three minutes). I felt I had to (b)log this event. It is perhaps the scariest behavior I have ever seen in the 5-6 years my mother has been suffering overtly from this disease.
I doubt if I will sleep much tonight. I hope she does.
I am extremely scared about this entire episode, and when I visit my father tomorrow in the hospital I will ask him if he has experienced anything like it. He has said that she gets extremely angry and nasty to him in the evenings sometimes, and has no recollection of it the next morning. But he's not mentioned anything that got physical before.
Does it signal some horrible escalation of her dementia.
It has been quiet for about 45 minutes now, and I am afraid to move lest she hear me and get up and start all over again.
I will continue to record my and my Dad's experiences here (as much as he tells me). If I can find her neurologist's email address, I will send him the link, or give it to him on the phone.
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