Suppose you tell someone they're invited to your wedding, and they say they wish they could come but they already have another wedding that day, and so they can't.
Suppose you tell someone they're invited to your wedding, and they say they wish they could come but they already have another wedding that day, and so they can't.
Saw this today, handwritten sign on a lamppost:
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My name is Jay. I am 6 feet 4 inches tall. I am looking for help selling two books I wrote.
[Phone number]
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Still wondering why his height is relevant.
I'm writing a scene right now that involves a ghost. And right as I'm writing the ghost's only line of dialogue, I press the CTRL key to underline the words -- and it pops off the keyboard. Ghosts are inside my laptop. I think I've been able to re-attach it, although it feels not-quite-attached. At least it's pretty much the least important key there is. On my previous laptop, a couple months before it was put out to pasture, the letters started popping off. Maybe it's the way I type. Although that one was 5 years old, this one's barely a year. So it seems way too early for my keyboard to start getting destroyed.
I don't know how to type, incidentally. I hunt and peck. Quickly, but with my 2 pointer fingers and that's pretty much it.
I added a few more books I've read to the sidebar, including Clay Shirky's excellent "Here Comes Everybody," a primer on how the Internet has enabled people to meet, interact, and organize collective action in ways we never before could, not just through sites like Meet Up but through mass e-mails, social networking sites, message boards, Twitter, IRC, and more. He opens with a story about a girl who lost her cell phone, and the person who found it refused to return it. In the "old" days, nothing could really be done. But her friend started a website and people forwarded it around and a whole community emerged -- police officers who knew how to navigate the system and get the police to take action when they otherwise wouldn't, people who knew the girl who refused to give back the phone, etc. And they got the phone back. It's a cool read. And the Jennifer 8. Lee book, "The Fortune Cookie Chronicles," is also an excellent read -- it's a history of American Chinese food, sort of -- stories about the start of the fortune cookie, about how no one in China would recognize General Tso's Chicken as Chinese food at all, about the American invention of Chop Suey, and a lot more. Lee went to my high school, but was a couple of years ahead of me and I didn't know her. I like her articles for the Times. Her book is worth checking out.
I just went to the library to give the books back and pick up the book I have on hold that just came in. Most of the people who work at my local library here seem perfectly nice, but there's one woman who just kind of confuses me with her tone. I imagine she means nothing by it, and thinks she's being friendly, but she makes me wish I knew what her hours were, so I could try and avoid her. She makes me feel bad about using the library, and I don't know why. I admit, I'm a heavy library user. I use the reserve system to its fullest extent -- you're allowed to place holds on up to 30 books, and they come in for pickup when you're next in line. Because there are often 40 or 50 people with holds on a book, and there might only be 6 or 7 copies in the system, it can take a few months to get some books. And so sometimes I'll return books and there'll be one or two books waiting for pickup, and occasionally I'll have 6 or 7. Last time this woman was there and I picked up books, I think there were 6 books waiting for me, and she made a comment about how they had to put them on the side because they were taking up so much shelf space. Which is fine, but the way she said it made me feel like she was somehow accusing me of doing something wrong. I'm not. I'm using their library system. She should be happy about that, since if no one did, she'd probably be out of job. But somehow her tone made me feel bad about reading. Congratulations. So today there was only one book waiting for me. I told her I think I have one book on reserve. "Only one book? For you? That can't be possible," she said. And she checked the system. "Amazing! One book. Two more on the way. (beat) And twenty-seven more still in the system." With a really snarky tone, like I'm a criminal, trying to steal books. I didn't invent the system. I'm merely using it. I'm writing about this not because I'm actually annoyed, but I'm confused -- what am I doing to make her annoyed? Why does she work for the library if she hates people who use it?
My mom and I went into a stationary store to buy stamps this afternoon (I'm in NY the rest of this week -- going to a friend's wedding this weekend). "Oh, we're all sold out. A whole bunch of people came in and stocked up for the holiday." And we nodded and left... before realizing... wait a second, what are they talking about? Are people lighting stamps on fire? Mailing fireworks to each other? What is it about July 4th that requires stamps, in any way?
I saw my grandma this morning, for the first time since she moved back home and got the full-time aide -- I've been back in LA since the day before she got out of the rehab facility she was in for a couple of weeks post-hospital. I walked in and she leaped up and said, "we're going somewhere!" And I asked where we were going, and she started coming down the steps and said, "you'll see when we get outside." And so we get outside, and she whispered, "I don't care where we go, I just wanted to get out of the house and away from the aide for a little while! I'm not used to this, it's like I'm a baby, someone hovering over me all day!" And so we drove around the neighborhood for a few minutes and parked under a shady tree and just talked for about an hour and a half before I brought her back home. She's doing reasonably well in a lot of ways -- she's walking okay, she's talking without any problems, she's mentally sharp at least to an observer -- but she's frustrated because she can tell there's still some problems with her brain, her reading still hasn't come back (although she can sound things out, slowly, if she really makes the effort, and she can spell aloud if you ask her to spell something), and sometimes the TV is just a little too fast for her to get everything. She went to the senior center yesterday for the first time since the stroke, hoping it would be like things were back to normal, but she felt uncomfortable being there with the aide, and she didn't feel like she could really contribute to the class discussion -- it was her poetry class, I think -- she hadn't been able to write a poem, and things were moving a little too quick for her to really feel like she was getting anything out of it. And she's embarrassed to have all her friends, who know she had a stroke, acting differently around her and in some ways treating her like she's a sick person, but at the same time not really being able to tell anything is wrong with her because she's talking fine, and so they expect she'll be the same as she was, and she feels like she isn't... and so she said she really didn't have a very good time. She's going to see a geriatric psychiatrist next week, and she's looking forward to the appointment, because she wants to talk to people who understand what she's going through. We're trying to find her a stroke support group in the area, even though my mom is worried it'll depress my grandma since most of the people there will probably be in worse shape than she is. But even if they are, I think that might actually (sadly) help her feel better as she sees that she has a lot of capabilities that other people in her situation don't. In any case, I think she's doing okay all things considered -- she's still pretty down about the whole thing, and bored sitting in the house all day, and doesn't like having to have an aide with her wherever she goes (and I've been encouraging my mom to go over there and take her for little trips without the aide, to give both of them a break from each other), and hasn't found a new routine yet (I suggested maybe volunteering at an animal shelter, but she didn't seem too excited about that idea), but I think she's slowly improving and feeling like she's doing ok overall.
I'm in an airport, between flights en route from LA to NY (free wireless in the Las Vegas airport (!), if anyone's curious). I just got this e-mail:
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Subject: more info on annonymous law firm
I found your website by accident while surfing the web on legal matters. My fiance (who is a lawyer) and myself and in the preliminary stages of starting a unique legal website business site called [ ]. It wd be great if someone from your firm can call me and tell me fore about it, and also I have some specific questions regarding your consultation procedures. My number is [ ] (mountain time zone). Looking forward to hearing from you.
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Seriously?
Anyway... TV recommendation for tonight... Wipeout and I Survived a Japanese Game Show, both on ABC. I saw the premieres last week and while I'm not sure I thought they were *good* shows, they were both *interesting* shows, and at least make me think someone at ABC is trying. Wipeout is a mean-spirited game show where people get hit by things and fall down, and the hosts make fun of them even when it seems like they need medical attention. I Survived a Japanese Game Show is a game show / reality show hybrid where they take a bunch of people to Japan, make them compete in a fake Japanese game show, and eliminate one each week. The fun part is getting to see a little bit of Japan on TV. The not fun part are the contestants. Each show worth giving a chance, I think, although I don't know if they're worth any more than that.
Can't believe George Carlin just died. I am mostly oblivious to any celebrities I may or may not pass on street out here, but just last month George Carlin was in front of me on line in Whole Foods. He was buying a gallon of skim milk and a dozen organic eggs. I didn't notice him at first, but the cashier said hi, and he said hello back, and I instantly recognized the voice and turned to look. He paid with a hundred-dollar bill, and while the cashier went off to get change from her manager, there were a good thirty seconds where we were both standing there, and I so wanted to say something -- like, "I'm a huge fan," or, I don't know, something like that -- but I was too shy. And then she gave him his change.
I just bought toothpaste -- there was a version of Crest on sale, and I'm a little confused by it. It's called Crest Pro-Health Night. I don't know what could possibly make a toothpaste specially formulated for the nighttime, as opposed to the daytime. And, in fact, the side of the box says, "Effective day or night, Crest Pro-Health Night is formulated with a unique nighttime flavor." It's a relief that it's effective day or night, since I wouldn't want to have to buy two different toothpastes depending on the time of day I'm brushing. But what exactly is the flavor of nighttime? As far as I can tell, it's mint. And in fact the name of the flavor, on the box, is "Clean Night Mint." Again, I don't really know what the flavor of nighttime is. Why does this product exist? I understand why there's Tylenol Cold day and night -- one makes you sleepy, one does not. But will this toothpaste make me sleepy? I hope it won't. I don't really understand the marketing reasons behind this product. And maybe no one did, and that's why it was on sale.
Coming soon: Charmin Morning. For those morning kinds of, well, you know.
I'm very excited to share the news that my girlfriend and I got engaged this afternoon -- she's been a little blog-shy, hence the lack of much talk about her on here, but I'm sure she won't mind me saying that she's absolutely terrific -- kind, passionate, decent, I have nothing but good adjectives I could use to describe her. She's finishing up her third year of medical school and planning to become a geriatrician -- which has made her especially helpful with all this grandma stuff, of course. Our two-year anniversary is Monday, and we'd been talking about this stuff for a while, and so she was expecting the proposal then, but I jumped the gun by a few days. Figured I'd be nervous all weekend and give the plan away if I'd waited. Plus I found myself pretty much unable to feel comfortable having an engagement ring in my pocket, for fear of robbers with x-ray vision coming to get me. I can't imagine anyone I'd rather build a life with, and spend a life with. She will likely continue to be blog-shy, and in all honesty, most of us with blogs -- and I'm putting myself at the top of that list -- could probably stand to be a little more blog-shy ourselves.
I am relieved to be able to say that I'm pretty sure my next post won't need to be about my grandma, because things have stabilized to a point where I'm starting to resume thinking about and doing other things in addition to worrying about this stuff, which is good. The last couple of days have shown real progress -- her reading and writing are starting to come back a little bit, she's seeming more and more like herself, and she'll probably be moved to an inpatient physical therapy setting in the next couple of days, with the plan right now looking like she'll end up being functional enough to go back home, although she'll probably need a full-time nurse/aide with her, at least for now. But she's up and walking, her appetite's been good, she's talking to friends on the phone, and to someone who doesn't know her that well, she can probably pass for someone who didn't just have a stroke last week -- which, for someone her age, makes her pretty darn lucky. She continues to be extremely self-aware about what's going on, and very good about articulating how her brain is working -- which has made this all, if I take a bit of a detached perspective, pretty fascinating from an intellectual perspective. Basically, when she's in control of the conversation, and she can pick her words, any deficits are pretty much imperceptible -- but when asked for the name of an object, or a specific question that requires an instant answer, she can't retrieve the word. I was telling her, actually, I feel like I know just what she means, because it doesn't sound terribly dissimilar in some ways to when I stutter -- I've written about this before -- but basically, normal conversation or when I'm fully comfortable I'm completely fluent, but when there's pressure on saying a specific word at a specific time, when I can't work around it, when I'm locked into the word choice, then I'll sometimes freeze up on it and I can't get the word out right away. So, for her it's a different place in the pathway -- it's the brain not being able to access the word instead of just the voice not being able to spit it out -- but it's sort of the same thing in practice. She's also been very zen about all of this happening -- on one level it's a bit of a mystery to her how it could all have happened so quickly, her brain working perfectly fine last Tuesday morning, and then by the evening she was in the hospital, but on another level as she's gotten back to herself she's started to talk about how she's realizing the scope of the impact, what she can and can't do, and she can deal with it -- she can still do a lot of things, she can still live an active life, she can still have meaningful relationships. So if she can't take the bus on her own, so if she can't see as clearly as before -- the right side of her field of vision has definitely been affected although it's not completely obvious yet to what extent -- so if she can't remember everything she wants to say as quickly as she could before, she understands, she's 92 years old, and she can adjust. Which is a big change from the morning after the stroke, when she wished the whole thing had just taken her life completely. But today she was like, "Okay, so I'll get out of here in the next few days, I'll go to physical therapy, and then when I go home, we can hire a nurse and I'll find a new routine." She's had a couple of one-on-one nurses in the hospital, and she likes one of them very much -- and this nurse has said she'd be interested in private care once my grandma goes home, if we're interested in her -- and so that may work itself out pretty easily. They're getting along well, she enjoys talking to my grandma, my grandma enjoys talking to her and finds her "unusually competent" (her words :), so it seems like it may be a good match.
Pointless digression -- It strikes me -- never, ever having thought about this before -- that finding a home health aide is probably a lot like finding a nanny -- you need to match personality, find someone who the "patient" likes and will listen to, and at the same time there's some sense of loss, in that this person will become a bigger part of the child's life or the elder's life than you'd ideally want a stranger to be -- yet it becomes the best option when no one can really devote themselves to full-time care. That said, I suppose the stigma -- and not being in that situation, I can't possibly pass judgment on whether it's a rightful stigma or not -- that comes with having a nanny raise your children doesn't really come into play when it's an aide helping care for a grandmother.
In any case, for now a bit of a sigh of relief, as she seems to be stable and getting better and I can blog about tonight's episode of Top Chef with a clear head, and return to feeling guilty about lack of progress on a law school pilot script I've been playing around with, and that I have an awesome outline for, that I'm really happy with, but yet for whatever reason I can't get myself excited to write.
Last two days she's thankfully been back to herself -- the delusions have passed out of her system, it was almost certainly due to the sedatives she was given during surgery -- and although day to day progress definitely continuing and definitely noticeable, it's becoming a little more clear what the scope of the deficiencies are from the stroke. Her speech has largely returned -- on a conversational level, it's not that easy to tell that anything's wrong, honestly. There are some word-finding issues, but it's more when asked specific questions about naming objects than just in ordinary conversation. But the more worrisome issues seem to be some vision loss -- her field of vision seems limited, she's not really seeing that clearly, or seeing things that aren't in her direct line of sight -- and some short-term memory formation issues. It seems sort of like some things just aren't "sticking" -- some things are making an impression and she's fine, but things that aren't terribly important seem to be passing in one ear and out the other. Like, she kept looking at what was on her bedside table to remind herself what was there, she didn't seem to be remembering from moment to moment. We brought her bananas today, and every time she was looking at what she had, it seemed like they were new to her. Part of that may be related to the vision and she's just not seeing things, but even things like how the TV remote works, what the physical therapy might be like, things like that, they're just not sticking no matter how many times we tell her. Which is frustrating, but more in the way that I fear they'll affect her ability to get along once she's out of the hospital than in terms of making conversation hard -- she's absolutely still herself, she's absolutely still able to have real conversations and deal with information and talk intelligently about things, people will still be able to have real relationships with her, she'll still be able to be engaged with the world at a reasonably well-functioning level... but if her improvement starts to plateau, I don't think she'll necessarily be able to do things like prepare food for herself, go shopping, use transportation, pay her bills.... But it's an encouraging sign that day to day progress continues -- yesterday she was unable to read her watch, but today it was not a problem at all (it's not a digital watch), yesterday she was unable to dial the phone, but today she was able to recall my mom's phone number from memory and dial it, although slowly. We're hoping in a couple of days she'll move to a rehab facility where she'll get some physical therapy, occupational therapy, and speech therapy -- and that her vision will improve so that reading starts to come back (she's able to write her name at least, but not really read at all -- not sure how much of that is vision and how much is language-related), and that the short-term memory issues will start to resolve themselves. But I'm much more optimistic than I was -- even at this level of function, I think she can still lead a fulfilling, although limited, life, and can still have real relationships with her friends and family. But I'm hoping the improvement continues and she can get to an even better place than this...
Another long, up and down day. We got to the hospital this morning and it was quite frightening -- my grandma was very agitated, trying to pull out her IV and get out of bed, insisting that the people in the surgical step-down unit where she'd been for the night were trying to hurt her, and they were evil, evil villains, we can't trust them, we have to leave or they will tie us up and torture us as well, and how can we stay there, and she has to leave, and we all must escape before it's too late and they kill us. We assumed part of it was she was utterly exhausted -- unable to even really open her eyes -- we were worried for a little while that somehow her sight had suddenly been affected, but then she opened her eyes for a moment, and said she was tired and closed them, so it was just the exhaustion. But despite the exhaustion, she was very, very hard to calm down. Partly because they'd restrained her after she tried to pull out the IV and she quite understandably didn't like the restraints, and they made her feel like a prisoner. But we got them to move her out of the bed to a chair, and take off the restraints, and she trusted me and my mom when we reassured her that she's safe and doing well and she'll be okay, and so I held her hand and she fell asleep... and then right when she fell asleep, they wanted to move her to another room, so they put her back in the bed and, somehow she stayed pretty much asleep through the room transfer and for the next few hours. So we figured things had stabilized when we left the hospital at around 4:30.
Until we got a call at around 7:30 from my uncle -- he's the first one they're supposed to call with any sort of emergency situation, he works as a biologist in a hospital, and my aunt's a doctor, so they're more equipped to deal with some of this stuff -- who'd gotten a call from the hospital psychiatrist saying my grandma was very agitated and we needed to get to the hospital and calm her down. So we rushed down there, not really knowing what to expect -- I feared that she was inadvertently harming herself, pulling out the IV, trying to get up, really physically acting crazy -- and was relieved that she was sitting in a chair eating the tuna salad they'd given her for dinner. But she was certainly agitated, she was very relieved to see us, and had the same sort of delusions as earlier in the day -- these people looked like human beings but they were really monsters, they're her enemies, she feared that she was being taken somewhere and we'd never find her and she'd never see her family again. And that everyone around her was an enemy and there were all of these people coming in and poking her and squeezing her arms and legs. We tried to explain to her that she's just in the hospital, and these are just the doctors and nurses, and everyone's trying to make here better. But she was insisting that they can't be trying to make her better, because they are so unfriendly, and she tries to be nice to them but they are not nice back to her. And we explained that that's certainly possible -- the doctors and nurses might in fact not be terribly friendly, and if she's not thinking clearly, I'm sure the blood pressure cuff and the blood draws and moving her in and out of bed would feel like they're trying to hurt her, but, no, she needs to realize her brain is just playing tricks on her and it's a hospital and she'll be okay. But the psychiatrist wasn't really making things any better. I passed him on the way to her room and he said I should go right to her room. Where she was pretty calm, although definitely not completely in tune with reality. Then two minutes later the psychiatrist runs in, looks around, and screams, "Where's the grandson? I thought I saw the grandson!" So I waved my hand and said I was right there. And he was a little confused, said he didn't see me. Then he goes over to my grandma and asks if she remembers meeting him, and telling us that we don't know what it's like, when we're here she's fine but as soon as we leave she's going to be crazy again. Wasn't sure I thought the psychiatrist throwing around the word "crazy" seemed quite right. And she asked me who exactly this doctor was, and I started to say he's the psychiatrist, but he yelled "No, don't tell her that!" And I sort of found myself starting to wonder who the craziest one in the room really was. And hoping it wasn't me. He was insisting that we can't stay with her all night because it's a female-only room and that would be a violation. But we weren't asking to do that. He then went back to the nurses station and for some reason called my mom, who had stayed at home, and said he was the doctor and we can't stay with her all night. Which, again, we didn't ask if we could, and what good was calling her when my stepdad and I were right there in the room. I mean, I don't think he was actually a lunatic, but he seemed much more agitated than I'd want the psychiatrist to be, and while my grandma clearly wasn't in touch with reality, he didn't seem to be helping. He then told the nurse he was leaving and if they need help, call the house doctor, not him. And he left. Bizarre.
We actually had met the psychiatrist yesterday when he came to do a consult because of my grandma's talk of death and her life being over, on Wednesday. But she was in surgery at the time, so he talked to my uncle and me instead. But he hadn't seemed to have read her chart and wasn't real clear on what was going on. He asked us how long she's been talking about suicide, which she hadn't been at all. And at least once made some comment about how we don't know what her situation will be after "some of her symptoms pass away," which I thought was a bizarre and head-scratching way to word that in these kinds of situations. He seemed like a doctor from the 1800s, sort of. He's probably about 80 years old, was wearing a brown three-piece suit, has a shock of white hair, and I could see him being very comfortable in an episode of Little House on the Prairie. When we mentioned her specific language loss -- anomic aphasia -- he waved it off and said we can't use the medical terms like that, he doesn't know those words. Okay, but he's a *doctor*, no? Anyway, he didn't inspire much confidence either yesterday or tonight. Although I suppose he's probably a very nice man and the stress of the situation, on my end, is making me expect more than I should and seeing him as less competent than he quite possibly is.
In any case, we calmed my grandma down, explained to her again that she's in a hospital and the doctors and nurses are not her enemies, and she's getting better and her brain is playing tricks on her and she'll be okay. And she, intellectually at least, seemed to get it. She said she was relieved to see us because she was worried "they" had taken us away, but she couldn't really explain who "they" were. And we pointed out that there's a TV in the room, and a window, and her roommate is very nice, and that all seems consistent with safe, good hospital, not crazy insane prison camp, and she got that pretty well. My uncle was able to arrange for a one-on-one private nurse to sit with her tonight, so we introduced her, told her she's very nice, she'll take good care of her, and as long as she's here, my grandma shouldn't worry, she'll be safe, and we'll be back in the morning. And she seemed to really start to get that her mind was tricking her and we wouldn't leave her in any sort of harmful situation and she'd be okay.
And then I discovered some magical food on her tray. I asked her if she wanted some of the canned pears and she said she did, so I gave her some pears and she ate a few bites and said, "Oh, gosh, I might have been wrong. Because if they're giving me food that's this delicious, I suppose they can't really be my enemies." I think that's probably the nicest thing anyone's ever said about canned pears! And then a few more mouthfuls and she said, "You know, I feel alive again. I really feel alive again. Is there more of that fruit?" And we gave her more. Magic, these pears must be. Magic.
The weird thing is that aside from this very terrible and frightening delusion about everyone out to get her, she's pretty lucid and with it. Knows everyone's name and completely understood when we were telling her about my mom getting some good follow-up test results from her kidney thing from last week, and was able to talk on the phone to my uncle without difficulty -- her language is really making a terrific comeback, the day-to-day progress pretty tremendous and gives me hope that she can get back to normal function with her speech, and not have any noticeable problems at all. But it's awfully scary to have to explain to someone you love that they need to trust you and that they're safe and there are not people trying to kill her.
We expect it's all from the medication from surgery or post, but we're also wondering if she might have had some sort of frightening dream during the surgery that she's confusing with reality. Because when I saw her right after surgery -- and I didn't think anything of it at the time -- what she said was, "Were you in there doing all the stuff to me? I know you're my grandson, were you doing all that in there?" And I said no, I wasn't doing anything but she'd be okay. I'm actually wondering a bit if the sedatives possibly didn't quite keep her totally out of it during the procedure and she was aware of some of it, and these bad people doing bad stuff to her was how she interpreted the surgery itself, without knowing what was going on, and she somehow internalized that as some sort of experiment on her and now quite understandably believes that everything these people do is to try and hurt her.
In any case, hopefully this will all subside after a good night's sleep, and besides the delusion she seems to be doing great -- good speech, and she's eating well.
(Incidentally, I really appreciate all the blog comments and e-mails I've gotten -- I'm writing this mostly just to get it out of my own head, but the well wishes have helped, and I've shared them with my family and will share them with my grandma once she's better...)
It helps me to write about this stuff, even if it's probably not terribly interesting to most people reading. But I feel like it helps me to process what's going on if I write, so I will. Long day, and I guess the really good news now at the end of it is that her situation seems a lot more hopeful than it did yesterday, although she's not out of the woods just yet. On the way to the hospital this morning, we got a call saying she needed emergency surgery, that they found another blood clot in her arm, it was cutting off her circulation, no pulse in that arm, cold to the touch, and they had to get it out right away and besides that were fearing this might not be the only clot still around and posing risk for another stroke. So I expected something pretty terrible when we got to the hospital, but it was really like night and day compared to yesterday -- she was completely alert, talking, able to carry on a conversation, and really only getting caught on a word here and there that she couldn't find. She said her arm was bothering her, and she was still feeling pretty down about life and saying she didn't want to be a burden and make us worry and this whole thing was like a sign it was time to go... but as the day continued -- somewhat surprisingly to the nurses and doctors, it seemed -- her arm suddenly felt much better, color returned, pulse returned. And her spirits seemed to come back with it. She started talking about needing her denture cleaner, wanting us to bring her hairbrush tomorrow, laughing a little bit, back to her old self. It was really a pretty remarkable change from yesterday. But the potential for more clots -- and not being quite sure what was going on with the clot in her arm -- was still really worrisome. The speech therapist came in to evaluate her, and it was really interesting actually -- my grandma was really very aware of what was going on in her head and able to verbalize it -- that she knew what words she wanted to say, but just wasn't able to find them in her head and say them. And she said she's noticed a real improvement from yesterday to today, and it's been a really strange feeling. She has complete memory of the stroke happening. She said she remembers having a perfectly normal day on Tuesday, she went to the senior center, bought groceries on the way home, carried the packages into her house and then went upstairs to change her clothes. And then the phone rang, and that's when this happened -- she answered the phone and it was a friend of hers, but the friend sounded very different, and she could hear that it was the friend's voice but she couldn't understand the words she was saying. And she knew they were words, but it was all very strange, she couldn't process them. And apparently then she had the presence of mind to call my mother and tell her she felt funny, which was what got them over to her house and then to the hospital. But she said she couldn't believe something like this could happen so quickly, in an instant, and she snapped her fingers. That all of a sudden things would go from perfectly normal to something like this. But she said she could definitely tell that it was much easier to find her words today than yesterday -- and, really, the progress seemed pretty remarkable, real conversations today that I don't think a stranger could have really picked up on something being wrong. We asked her where her checkbook is, to pay bills, and she said it's in one of two places, either the office, or the -- and she paused for a moment -- the place she eats food. Kitchen, I asked. No, no, with the table. Dining room? Yes, yes, that's it. It's in one of those two places. So she was very much with it and the progress seemed really remarkable. And then the vascular surgeon came in to evaluate her arm and we had a 180-degree shift back to being really concerned -- he couldn't find a pulse in her upper shoulder on the side where the arm had been having trouble, so he was concerned that the clot wasn't really in her arm but where the arm and the carotid artery both branch off from, dangerously close to her heart, and putting her at great risk for something terrible happening. And even if we ignored the risk of anesthesia and major surgery for someone of her age and condition, he wasn't sure it was even a surgery he'd be able to do -- to get the clot out without causing problems. He wanted to do an angiogram to see exactly where the clot was, and then hopefully, if it was just in the arm, get it out with a catheter. And if it was near the heart, then he would pull out and we could evaluate options -- probably transferring her to a different hospital and unfortunately having her undergo some pretty major and risky surgery. He said the angiogram would take about an hour or an hour and a half, and they'd do it under local anesthesia and a sedative, so she wouldn't be completely put under. So we agreed to that, and then spent about two and a half hours (which felt like two and a half days) waiting, and worrying, and expecting the worst -- either that something bad was happening during the procedure, or that he'd find the clot was near the heart and she'd be in pretty dire shape, and at great risk for another stroke, this time even more devastating. But then, finally, the surgeon came out, said he imaged the whole area, the carotid artery was clear, the heart was fine, and the clot was in fact in her arm, and he had been able to get it out, and she was in the recovery room, all was good. So, best case scenario it seems. She was out of it from the sedative -- wasn't sure if she was awake or dreaming, last we spoke to her in the recovery room. But she was talking clearly and didn't seem to have given back any of the gains she's had so far. So the hope is that there won't be any more clots -- although that's the big risk at this point, and something we're really scared about -- and that she'll continue to progress -- and if the progress continues at the rate it has in just these two days, she really might get back to a point where she's functioning pretty well, and hasn't lost too much quality of life. She's a resilient one. The change just from yesterday to today was really amazing, the emotions were so up and down today, from amazed at her progress to scared out of my mind about the clot, to relieved and cautiously hopeful now at the end of the day.
Long post. Phew.
I should be sleeping. I think I was sleeping, but now I'm not. Unless I'm writing this in my sleep. I took the red-eye flight back to New York last night, landed at 6AM, got about 4 hours of sleep, and then went to the hospital to see my grandma. And some of this is probably due to my own lack of sleep, but I don't know what I think. She did in fact have a stroke, but as far as strokes go, it seems like it could have been a whole lot worse. There's no evidence of any motor loss -- she's able to move her arms and legs, the nurse said she walked to the bathroom this morning, there's no noticeable weakness on either side. And her comprehension and memory seem intact -- she knows where she is, she knew who I was when I got there, she was upset I had to fly all the way back to New York a day after flying to LA, she was lucid, she made sense, she wasn't slurring her words, she could communicate what she needed to. The only thing is that she's having trouble finding some of the words she wants to use -- mostly nouns, it seems. And there's not necessarily any reason not to hope that'll come back over the next few days and weeks, and with some speech therapy and good fortune she might be able to restore the speech. Unclear at this point if she's lost any reading or writing functionality -- she apparently wasn't able to write last night, but we didn't try again today, and we haven't tested to see if she can still read normally as before.
But more than whatever deficits the stroke may have caused, the really hard thing today was that she was just clearly in a tremendous amount of distress. She was exhausted, and felt very nauseous -- and I think feeling overtired and overwhelmed and nauseated sort of made the whole thing feel a lot less manageable for her, and it was hard to really get a sense of how to separate the (hopefully) transient feelings of nausea and exhaustion from whatever the effects of the stroke are. And so she was very bleak -- she was saying she's old enough, she can't do this, if this is how she's going to be she doesn't want to be here anymore, she loves us, she doesn't want us to be mad or upset about this happening, but that maybe her time is done. And it was sad and heartbreaking and frightening and whatever other emotions I can't articulate to see her like this. On the one hand knowing what she was trying to say, and feeling like, yeah, she's 92, she has lived a good life, and if she's going to be in pain, if she's going to feel trapped in her mind and unable to live independently and unable to really do anything at all but lie in a hospital bed, uncomfortable, tired, nauseous, frustrated, then of course what's the point, and how could anyone want to go on like that. But on the other hand feeling like if we could get past the nausea, and if she can get some sleep, and get hydrated, and we're just dealing with the language issues and can figure out how to tackle those, she might see this all differently, and she might be able to get back to a very well-functioning place. So it became a matter of trying to convince her she can get better -- that she'd only been in the hospital barely 18 hours and she needs to trust us and believe that she will feel better, and the language might be able to be restored, and the nausea will pass, and it won't seem quite so bleak in another day or two. And that there might very well still be life left to live and life worth living. But at the same time, the idea of dragging her through months or years of pain and worthless torture for a quality of life that may be pretty dismal at best seems cruel and inhumane and entirely horrific.
So I'm just hoping and hoping that she can get some rest, despite being in a hospital bed (with a roommate who apparently screamed throughout the night last night, and this afternoon had trouble breathing and they had to take her to the ICU), and the nausea medication they were going to give her works, and she can feel well enough physically that her spirits can be restored and she can realize that this isn't necessarily as bad as she fears -- she hears the word stroke and it terrifies her as to what has happened, and I'm not sure she's aware of how much function she still does have perfectly intact -- and she'll want to fight through this and it'll be okay. But at the same time, I'm -- I don't know if this is the right word, but I'll use it anyway -- resigned to the scary possibility that she may not be able to get through the nausea and exhaustion, and her body might be starting to shut down and it's not going to get better from here. She's really never been seriously sick in her life -- a few hospitalizations in the past decade, pneumonia once or twice, but really nothing much at all, and so she doesn't have a real perspective on how much the body can recover from, and I'm worried she's resigned herself to believing this is orders of magnitude worse than it might in fact be -- and I'm sure she's scared out of her mind. She was so insistent on saying she loved us, she knows we love her, she doesn't want us to feel sad about this... it's so scary that in an instant -- and I know, it happens to everyone eventually, and often at much younger ages than this -- someone goes from active and stable and functioning to something much, much more tenuous.
What's scaring me tonight -- what's keeping me awake, I think -- is fearing that she's in that hospital bed right now and not completely aware of what's going on, or of the passage of time, and doesn't realize we'll be back to see her in the morning, that it's only been a day, that she's not merely all alone and left for dead in a storage facility for the elderly, which is pretty much what this hospital felt like today. We ordered her the TV, but I'm not sure that even before this she would have been able to find the remote control on the nightstand and figure out how to use it. I kind of want to find some sort of portable radio for her, just so she can flick a knob and hear live voices, and realize she's not just marooned somewhere all alone. I don't know. I used to think -- by "used to" I think I mean until this afternoon -- that if anything ever happened to me, as long as I could communicate, even just in a partial sense, it would of course be worth it, that life is worth it even in a very, very limited state. But seeing her this afternoon, clearly in distress, clearly not knowing what the future held, and so scared of what was happening to her body, I don't know if I still think that makes sense.
Hopefully a better day tomorrow. Hopefully.
I'm back in LA -- was just watching last night's How I Met Your Mother on the DVR, and there was a local news teaser that I really, really, really could not believe. I'm paraphrasing, but essentially:
"Thousands die in China earthquake. Are you ready for the big one? Find out tonight at 11."
Yes, because who cares about the thousands of people in China, the important thing is whether you have a flashlight and some batteries.
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