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ritaxis: (golden city)
Saturday, August 13th, 2005 01:34 pm
I slept in today. I have worked 109 hours in the last two weeks and I've had laryngitis for longer than that. I don't know if laryngitis is always the result of infection, or if it can be a functional thing. Anyway it seems to make me tired in a way. Talking is certainly a lot more effort than it ought to be, especially considering that a large part of my job is carrying on conversatrions with Gloria, conversatrions that can go on a very long time as she struggles to understand and be understood.

So I guess the good thing is that I have written a couple thousand words on Afterwar this week, and transcribed a thousand or so of The Donor. I also solved an incluing problem. Usually I like to have the internal evidence of the text itself establish the timeline for the reader but I was pretty sure that the chronology of Afterwar is too complicated for that, since the chapters are not presented in chronological order and there's a torrent of people and events and the grand march of history interacting with the small details of individual lives. So I have done a simple thing: I have given each chapter a subhead that places it in relative time. The first chapter is twenty-five years after the General Accords: the second chapter is twenty-five years before the General Accords. It makes me happy. I think I opriginally rejected this sort of thing, but I think that was before I munged the chronology as much as I have now.

THe Book of Gloria is starting to take shape. I am printing out pages with photographs mostly featuring Gloria doing things and going places, each labelled. I have written on some of the pages the names of objects she might be looking for, such as "pink sweater." Every day or so I print out two to five more pages. Each page is a coherent whole, and they're roughly prganized into pages about friends and family, pages about activities mostly around the house, pages about places to go, pages about things she might want or need, and pages about animals and flowers she might want to talk about.

The report on primary progressive aphasia is very big on simplifying: simplifying the space (throwing things out), simplifying activities, simplifying conversations. Good enough advice, but I get the impression that the level of simplifying they're thinking of is greater than Gloria needs, wants, or can benefit from. The examples of simplifying conversation that they give are the stupid dop-away-with clauses, conjunctions, and relational adjectives I sometimes see advocated as the way to make reading material easier for younger readers and English language learners. And that's stupid, because it makes the language unintelliglible, since it destroys the relationship between one item or action and the others. What I have been doing is limiting the number of pieces in a sentence -- two or three is fine, you can include the relationship words, making the sentence intelligible, without going on too long and losing her before she gets to the end. Something to bear in mind is that this is an intellectual, who taught high school English, followed current events and developments in science and the arts, wrote ironic poetry, and wrote essays in French. So, while she has lost a lot of language and some thinking tools that are dependent on language and is constantly struggling, usually somewhat confused, often overwhelmed, and sometimes exhausted, she's not stupid and she's not incapable of understanding things or drawing reasonable conclusions about things. She has a very soft, girlish-old-lady way of speaking, which makes it hard sometimes to realize that she's saying something intelligent behind all the word glitches. But I get to focus on her and I get to take the time to work out what she's trying to say, so I can usually get it. Or close to it, anyway.

So the kind of book that the report suggests is very minimal, with just common wants pictured so that the diminished old person can point to a banana or something and grunt "this! this!". If she lives long enough Gloria may be reduced to that. But I think in the immediate future she needs only a conversational prop and prompt, and that each picture can have more information than that. Or some of the pictures can anyway. The idea is not just to make her life easier and to make minimal communication possible, but to stimulate compensatory strategies by giving her what we used to call "scaffolding" in education. And to keep her talking -- "use it or lose it," they say, in other aging subjects.

Lately I've been wanting to talk to Oliver Sachs about it.

On other fronts, the nice fellow and three of his friends went up to the White Mountains and camped out just downslope from the bristlecone pines to watch the Perseid meteor shower. They first got to watch a lightning show for a few hours, and then they got the meteor shower. Rolfe told me about being up in the mountains when a meteor went past them and lit up the mountainside like a magnesium flare.

On still other fronts, my golden muscat grapes are almost ripe, and there's going to be too many of them, and I'm probably going to make raisins instead of wine (I might make wine, though)!
ritaxis: (Default)
Friday, August 5th, 2005 10:34 pm
When your workday is twelve hours (including commuting commuting commuting on a most unreliable freeway) you don't get much done besides your work. And this is even taking into account that my "work" is hanging out with a friend, taking her to the hairdresser's, the bank, the movies (we saw "Must Love DOgs" today and "March of the Penguins" last week), restaurants, stores . . . notably the Capitola Book Cafe where the science magazines are all nestled in this one cozy corner (the magazine section at this bookstore has tripled in size over the years. And I thought magazines were dead, more or less?). Yes, although Gloria can't read beyond the single word level anymore, she still prefers science magazines and newspapers for her something-like-reading. So I don't have any new writing progress to mark for myself, but I have been working on a books of sorts.

Gloria's condition is not sequel to a stroke, after all, as she had been suffering from language loss before the stroke. They call it Primary Progressive Aphasia. If you ever see "primary" in a disease, it means "we don't have the slightest clue in the universe as to what causes this thing." "Progressive" means "it gets worse and worse until you die." It's different from Alzheimer's in rather significant ways. The most important one is that she has not lost her memory and she has not lost the capacity to form new memories -- that is, she can learn things. This has consequences. Good ones -- we can establish new routines to fit changing circumstances. She can learn names of new people (and I, for her purposes, had become a new person). Bad ones -- she can hold grudges. She can hold on to plans or ideas that you wish she wouldn't. SHe has this idea that everything would be much better if she could just withdraw all her money at once and have it in a little pile to give to her children and anybody else she fancies (including me, which is an icky thought, if you think about it). Money denominations are a vague concept to her now -- she knows that two twenties is more than ten ones, but when she buys something I have to tell her how much to hand over, and I have to reassure her all the time that, for example, sixty dollars is more than she needs to get her hair set and buy a sandwich at Erik's Deli.

The bookj of sorts that I am working on is the book of Gloria. Every day I take pictures of things she does, or people, places, or things that matter in some way or another. I've been printing them out and putting them into an album. Since the part of speech she has lost most of is nouns and some verbs -- the more specific ones, the more general ones seem to be stored in the same place as the adjectives and adverbs -- she's already having trouble expressing what she wants. You have to do a lot of detective work. That's actually a big part of my job. I hang in there with her as she tries to explain things or tries to understand things. After the hard ones, I always make sure to point out that she just did a tremendous amount of work, and peatience and perserverance paid off. I've told her a few times what I think is probably true, that if she wasn't basically very intelligent and if she didn't work hard, she wouldn't be able to talk at all now.

So the book. It has pictures so far of Gloria at the stove, Gloria watering her plants, Gloria at the compost heap, Gloria getting the newspaper from the top of the driveway, Gloria at the hairdresser's and at the bank and Super Taqueria: of the Advil bottle on top of the refrigerator (Advil is the only medicine she self-administers and we actually kind of try to get her to involve us in it because sometimes she forgets how many she's taken), Nappy the cute little rat terrier, the coyote at the compost heap, her son, myself, and the other caregiver. Taken but not yet in the book are pictures of her shopping at various stores, eating at other restaurants, making her bed, choosing a science magazine, playing the piano, going into a restroom at the Gottschalk's department store on Main Street, pictures of the neighbor dogs and other such livestock (there was a bug, like a tropical crane fly, I mean huge by California standards and I'd never seen anything quite like it, dazed on her kitchen floor this morning, so I took a picture of it before I ushered it out the door). I've planned pictures of the rest of her family, her neighbors, the goats at the bottom of the hill, the bunnies, the quails, and other places she might go, things she might want. A picture of her holding each of her canes so she can point to the picture of the one she wants. A picture of her holding her purse. A picture of her putting on her gloves, her jacket, her sweater. Doing the laundry. Pictures of her favorite foods. In the long run, I also plan to clearly and concisely label things in the pictures, because odds are she'll be able to sound out words for a lot longer than she'll be able to recall them.

Besides the book of Gloria, I want to use the pictures to illustrate a weekly schedule. Monday is money day: so the picture of her at the bank goes there. Friday is the hairdresser's: so the picture of her reading under the dryer hood goes there. A picture of her youngest son on Saturday when he comes to respite her middle son. A picture of her oldest son on Sunday when he comes to do respite and to do immense projects on the immense property.

On other fronts, Absolute Magnitude didn't want the self-aware self-healing minefield story. "Not for us." And I still haven't heard from the three-letter publisher. I don't mean they haven't accepted or rejected it, I don't expect that, but two followup contacts asking where I am in the process -- I expect at least a tiny acknowledgement that I have asked, and a response on the order of "the acceptance/rejection is on its way" or "it's in a pile to be read" or "honestly, we don't know, it's around here somewhere, we're pretty sure of that."

On still other fronts, I think I'm kind of ill -- sore throat and other obnoxious symptoms. I should be in bed.
ritaxis: (plum blossom)
Thursday, July 21st, 2005 09:45 pm
I'm back to long days with Gloria.

The more comfortable she is with me, and the more she understands that I'm willing to hang in there until she can get her ideas across, the more sense she makes. Yes, she has some confusions. But the confusions are minor compared to the havoc wreaked by the aphasia. Imagine: an intellectual, a teacher, and she can't read any more, and she can't hold words or complex concepts in her mind long enough to complete a thought about them. But she hasn't lost her delight in intellectual things. Today's errand, for example, was to go to one of the bigger bookstores so she could buy a couple of science magazines. She chose Scientific American and Discover and we didn't say that they were especially good because of the pictures. And she got Flatland because she loves the book and wants to give it to someone as a present. SHe opened the book to a kind of random page and gazed at it lovingly when she lay down for a nap.

Sometimes we have to work really hard to recall a word for her, or an idea. Like yesterday we went to a restaurant and she wanted -- well, this is how it went. "I wonder if they still have that, something else?" she made a rounded gesture with her hands that looked like she was indicating a bowl. I suggested dessert. She frowned: I was close but not on it. I started listing kinds of dessert -- cookies, cake, no, no, she m,ade a gesture as spooning up something soft. Ice cream? No. We got the menu back and I read all the items. Big smile. Tapioca! Then she said it a few times but it was gone before the waitress came back. So I had to prompt her. Today we were at the same restaurant and she could almost remember the word, but the best thing was she could say "Like I had yesterday."

Before her husband died, when I was first coming out to be with Gloria, he said "She's still an intelligent woman, you know." I don't know if he was i denial about the ravages of the aphasia, or putting up a front to me, or if he was on to the thing I'm on to. Because what I see, actually, is an intelligent woman, who has had many of the basic tools of her intellect blunted, broken or stolen, who nevertheless exerts her mind to interact with the world. And I see rational thought processes even when she has erroneous interpretations of events.

The closest to delusional thinking she does is about her husband, who is sometimes divided in her mind. A couple of months ago she pointed to pictures of the young Jim and said "That guy wanted to marry me, but it didn't work out. I think it's better that way." During that time Jim was often grumpy with her and occasionally psychotic from the effects of his cancer and the treatment for it. Other times in those days she'd allow as how the young Jim in the pictures was her husband but "that guy in the room over there" was somebody she didn't know and didn't want to be connected with, though she wished him well. She was occasionally appalled that her children were talking about keeping him at the house. Today there seemed to be three Jims: her husband, the grumpy man who was sick in the house, and a stand-in that Hospice sent to the house after her husband died in the hospital (he actually died at home). SHe thought it was a well-meaning error for them to have done that and that she should have been allowed to be with him when he died in the hospital instead of having this grotesque thing in the house.

But mostly she's pretty accurate about her family, remembering things fairly lucidly, only with the words for them quite beyond reach.
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