Wednesday, August 12, 2009

Update: my Mom's stroke

My mother, father and I on a trip to Nova Scotia, in the early 1980's.

Okay, so... Sorry to bury Eugene Chadbourne and the New Model Army with lengthy personal things - those of you who tune in here to read fringe and punk culture stuff should scroll down, there's plenty to see. But I'm seizing a moment to sit at the computer and reflect on the last few days. My father's gone to the casino alone by bus this morning (Wednesday, August 12th, as I write this) because he has tickets to cash in and points to collect (and a commitment to keep the bus full, which he can best do by going). I've gotten some time alone - I can't go to the hospital for a couple of hours yet, so here I am, on the computer.

Mom can't speak in the slightest. It makes for challenging conversations. She completely blanks out when she tries to think of a word. It looks like Broca's aphasia, to me - it's been awhile since I took linguistics classes, but I've studied these things slightly and that seems to be the condition at hand. She seems to have pretty good comprehension when people speak - she laughs at my jokes, shakes her head or nods to yes-no questions, and when she wants to tell me something (often using gestures or pointing to pictures on a chart she's been provided, initiating a sort of 20 questions game where I have to try to figure out what she wants to "say"), she can easily understand when my guesses are wrong and indicate so. She just can't reply with language. It's not a motor thing, for the most part - she can make sounds, and so far has been heard to say "ohh," "ahh," and "Oh God!" - because these phrases, I assume, come from some affective area of the brain that does not deal with grammar. Dad even says she said "Yes," once, and I heard her begin a sentence with "I" before stopping. She can even hold a pen and write a little, though usually she can only manage "would liked." (Not "Would like" - she gets that wrong). But that's it - she manages these two words, then, after several minutes sitting with the pen and paper, shakes her head and gives up, shrugging as if to say, "I just can't!". Her reading comprehension seem to be damaged a bit, too... but otherwise, the main problem is that she can't find the words she wants anywhere. Language has, the above exceptions aside, completely disappeared; she has not, since Saturday when the stroke happened, uttered a single sentence, a single syntactic construction. She can't even repeat what people say to her (tho' I did get her to repeat "Oh God" one time, after she spontaneously produced it; interestingly, her second production was nowhere as clear as her first). We'll see if more words or phrases are possible today - I'm going to try to get her to say a few names, and to repeat a couple of things - but for the most part, her ability to produce language is totally zapped.
Mom circa 2002

All this makes communicating with her a bit challenging, as you might imagine, but I actually enjoy these visits quite a bit. She's still my Mom, she's still visibly present and happy to see me, and the problems that communication poses are an interesting challenge for both of us, at least in the short term (I could see her getting frustrated and depressed at some point, if her language skills stay absent, but at least some part of her seems to find all this quite a weird new journey to be on, and she's bearing up with grace and humour and curiosity). We laugh together a lot - at her noisy wardmates, at stories from home, at the guy across from her who sleeps with his mouth wide open, and at the strange situation we find ourselves in. I can manage a few hours with her at a time before she gets tired and/or my steam runs out. (When "conversation" fades she tends to tap my arm and point at the door...). One can do nothing but accept that this is the situation and try to deal with it - it could have been so much worse that in a way the realities of the situation come as a great relief (ie., she's not dead, catatonic, or in pain; so what if she can't speak right now? We can work on that).

The one who is driving me a bit nuts, however, is my father. He has visited her every day and joked with her and so forth - but, a cancer patient himself, he is determinedly not giving up those things that give him comfort, which he is clinging to for whatever they're worth: namely, beer and horseraces. I try to get him talking about stroke, about aphasia, about Mom's rehabilitation - and he'll listen and ask questions for a few minutes before it all gets frustrating for him, and then he'll want to counter by telling me about the Australian jockey Barry Shin, whom my father considers a very safe bet. (He is more comfortable, like most men, sticking to areas where he has some expertise; things that are beyond him are intimidating and tend to get him upset - like trying to explain how to use the computer for something OTHER than watching horseraces, say). I have a real hard time even feigning interest in his racing stories or the streaming videos he watches from around the world, even though he gives me - and mom - a cut of his winnings. It just really does not matter to me in the slightest which of a dozen horses goes around a track first; I don't get it. Maybe if I had money bet, I could get myself excited for a few races, but I cannot comprehend how anyone could take an interest in this question a dozen times a day every day of the week - to get passionate about selecting horses, jockeys, evaluating track conditions, and so forth. Wouldn't it all start to seem... the same?

My parents getting off the bus at the casino

Plus he's a bit jangly to be around. Even when he hasn't had a few beer, he talks a little too loud, is a little too much; he has to fight, I suspect, to rise above his illness, and he rises, maybe, a little higher than is ideal. I'll be making tea or reading on stroke or checking something online and he'll be booming racetrack trivia at me or telling me about problems in the building or stories about the food in the freezer or such and I'll kind of have to struggle to keep listening; there are so many other things I'd rather be talking about - including how he feels, which is seldom a topic. He's a rather stoic guy, one might say. He's sleeping only a few hours a night, too, so it's understandable that he's a bit wired, but his edginess is a bit contagious, ultimately (which my Mom has noted many a time, before the stroke; I can laugh with her now - I know what she means!).

But the thing that REALLY drives us crazy is his perpetual, maddening obsession with saving money. When Mom was feeling testy the day before her stroke, she gave father "supreme shit," he told me, about an episode where the two of them had searched their vast, full-up freezer - because, as children of the depression, they hoard food, especially him - for ribs that he could cook. (It's about the only food he really enjoys, though cancer is taking his sense of taste even for barbeque sauce). They couldn't find any, so she told him to go buy some, and he responded that he would wait til they're on sale. She flipped: are you nuts? You want ribs - go buy some ribs! Who cares if they're on sale? Her outburst - angrier than usual - startled both of them a little, to hear him tell of it, and he says now that this grouchiness was probably a precursor to the stroke. Mind you, all this ultimately made for two good jokes that my father passed on for me to tell Mom: that he had (he reported proudly) gone out and bought some ribs at full price, and that he had actually found some ribs at the bottom of the freezer - which, to his amusement, had an expiry date (which he saved to show me) from the year 2000 on them. ("Nine years they've been in our freezer!" - she laughed a lot when I reported on this).

His latest bit of cheapness has been an item of contention between him and I for the last day, however. A company that sells vacuums called to tell him he was one of five lucky people in our area who will win a "free gift" if they can come to the apartment and demonstrate their vaccuum cleaners. My father accepted: he doesn't need or want a vacuum, he just wants the free gift - which they'd talked up as being worth a couple of hundred of dollars - or at least to see what it is. He told me this on the phone yesterday, as I called from the hospital to report on Mom's condition; he wanted me to promise that I'd stay here, while he's at the casino, to let the guy in to vacuum and demonstrate. ("Make sure you get the free gift before he does his demonstration!" he told me, half-shouting. "He'll tell you he left it in the car, but under no circumstances let him vacuum until the gift is in your hands!"). But Dad, I said, you know this is going to be bullshit, don't you? "I know! I'm not stupid! But I want to see what it is!" But Dad, you know what the gift is going to be - some worthless trinket, or else a "discount voucher" for some hotel somewhere, which you can only use if you pay a bunch of money to fly some resort or other. "I know that! I wasn't born yesterday! But I want to see it with my own eyes and laugh at them, if they're going to call me with these stupid offers!" We brought it up again after I came home, and he grew increasingly angry as I protested. "If you won't do it, fine - I'll reschedule!" So suddenly it turns out, this morning, that I have to prove my love for him and my family by letting the vacuum cleaner salesman in, watching his demonstration, and getting the gift off him. My mind is elsewhere - I try to imagine getting into a Mexican standoff with the vacuum guy: "No, you can't vacuum until you give me the gift!" ...and then him trying to high-pressure me into buying a $3000 vacuum while I try to think of a way to get him out of the door, clutching my bounty. Not really how I want to be spending my morning, you know? I have other things on my mind.

...In fact, the dude showed up as I was writing that very paragraph. I told the guy at the door - look, my mother's had a stroke, and my father can't be here - I don't mention that it's because he's at the casino. But *I* can watch the demonstration and report to them, if he likes. I feel kind of guilty about the whole thing, since I know the guy is counting on commission: I want to tell him - because I've known people who have done this job - that there is no hope in hell that he's going to get a sale. He says he'll reschedule, then we talk for a minute about how stroke has affected his family, too. He seems a decent enough guy for a salesman. Before he goes, I ask him what the gift is ("my father's really curious.") To my surprise, he tells me: it's a nice set of German knives and a voucher for a hotel somewhere - a "promotional gift," he calls it. (I didn't ask where the hotel is - it's not like my parents are planning on travelling).

But anyhow - mission completed! Now I can get ready to visit the hospital. At least I can make a story out of it - "Sorry I'm late, but you'll never guess what Dad made me do today..."

A blurry photo on a bad day at the casino, Canada Day 2009. My father likes to sit at the keno table and drink beer when he's not feeling well. When Mom and I are there with him, we'd go join him after losing streaks, or to report the odd win...

(Later that night):

Sigh. It turns out that Mom needs TWO areas of impairment before she can be admitted to rehab at Eagle Ridge, which seems the best bet for her to get the help she needs. She can move around just fine, can balance, isn't really paralyzed at all, so the only actual impairment visible at present is language. There may be some cognitive damage - she seems kind of fumbly and confused at times - but she's mostly so alert and cooperative that it's easy, if anything, to overestimate her abilities. (And without language to go by, it's not so easy to assess her cognitive function. I mean, today she picked the month of "September" from a list of months, when her physio woman asked her what month it was; but that might be a language thing, not a confusion about the month).

There are other frustrations with the hospital bureaucracy that I won't get into - bizarre contact precautions relating to an infection Mom had nine years ago, not as much speech therapy as I'd like, and not much for her to do on the ward (even the TV down the hall appears to be broken; she just lies in bed and listens to music). The most hopeful thing is that she could play tic-tac-toe with me today. She could make X's and make intelligent moves, leading to two stalemates out of three games played (see right - she was making X's); the other day, when I invited her to play, she knew what the game was, but could only make a scribble for a mark, and couldn't see when I was obviously about to complete a row (see left - she was making O's, though you'd never know it). On the other hand, she couldn't remember how to play blackjack, and that's a favourite game of hers - she and Dad play it every morning for nickel bets. Or used to... God, Dad has a lot on his plate right now - things have changed so much, so quickly. What will they do if they can't play cards or Scrabble together? It's going to be a rough road for both of them... I wish I knew what he was feeling, but it's so much easier to focus on Mom right now...

One last note: my father and I played one-on-one Scrabble the other day and I found a scoresheet with Mom's last game on it. She won, 335 to 299 (she usually doesn't). She smiled happily when I told her. She also cried a bit today, in frustration and sadness at the state she finds herself in, but I told her I loved her and was just grateful she was still around and still my Mom, and that seemed to help her a bit; we hugged for awhile and she seemed happy at the end of the visit.

Tomorrow I think I'm going to try to re-teach her gin rummy... What might be our last Scrabble sheet as a family - three handers from last weekend, plus Mom and Dad's last solo game in red, and a couple of one-on-one games Dad and I played yesterday.

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