Sunday, April 18, 2010

Interminable Baseball & Dementia & Queer Optimism & Metaphor

When last I wrote in this blog box, Michael Snediker was in the air back to the east coast and I was listening to the interminable game between my St. Louis Cardinals and someone else's New York Mets. That game ended in the 20th inning; only in theory can baseball games lack endings. After 18 innings during which neither team scored (it's nearly impossible to achieve so little, yet that also marks an excellent series of pitching performances), the Mets prevailed 2-1. The last innings featured a starting pitcher playing left field for the Cards, a utility infielder (or two) pitching, and announcers whose voices verged on hysteria. You can find the box score here; that the game tests the limit of "box" is only appropriate. It was a game played outside or beyond the box, maybe even beyond the diamond. For a close reading of the game, see Viva El Birdos, a wonderful Cardinals blog.

I received another series of boxes in the mail yesterday, part of the "Service Plan" of my mother's Alzheimer's care provider. In carefully numbered sections, 1-25, is set out (passive voice intended) the plan for care and the "expected outcomes." In academic lingo, these would be SLOs, or Student Learner Outcomes, but in an Alzheimer's home the goal is not to learn so much as to slow (not SLO) the process of disintegration. Beside each "Expected Goal" is a list of four possibilities: Maximize Independence, Maximize Orientation, Minimize Agitation, and Minimize Health Risk. At the end, there is an Other, specially tailored for the resident, but in appropriately bureaucratic language. For example, under "Personal Hygiene," the Other function is "Resident will be [sic] appear neat and clean," followed by "Expected outcome in 6 months." All of these outcomes are expected in 6 months as a matter of principle, or at least as formal closing to each numbered "box" of actions by the care home.

In bold, the reader finds language specific to "her," or as she is sometimes called in the document, "Mrs. Schultz." And so, under number 3, "Dressing and Undressing," I read: "Encourage her to dress herself. Help her as needed and lay out clothes for her to wear." There are also certain surprises in the bold language: under #6, "Bladder Management," I read: "Mrs. Schultz is incontinent of bladder. Wears pull ups. Will use grab bars when needed." And then, "Hospice to assist with this care at least twice a week." About 10 days ago I was told that the staff wanted to see if hospice would help with her care, but there was nothing bold about that inquiry. Here, in cold hard type, hospice care enters the documentation proleptically.

The dull language of the form at times captures something of my mother's personality. For example, under "10. Challenging Behaviors" (and which of hers were not, at some point, so!), we are told: "Mrs. Schultz does not like to take showers on her own and does not like to get her hair washed. Will need to redirect and encourage her to get this done. Otherwise is not exhibiting any challenging behaviors at this time." And in the next section, "11. Socialization and Activities,", in bold: "Encourage her to participate. Likes to read the Washington Post. She does not like to be approached to dance or actively get involved in an activity but is a passive participant." While this section appears outdated--she no longer reads or even glances at the paper, nor does she passively participate, but sits alone in a chair, her right elbow off the arm rest and in her lap--it does reflect the personality of a woman who insisted that each thing could be chosen. That will would make things right. That one could master one's soul and captain one's fate. That, while others might try to intrude, one had arms with which to push them back.

I mean to turn back to Michael Snediker's language of queer optimism in this post, somewhere, in large part because this document, like my mother's condition, is in so many ways grim. It's passively grim; as I was told last week, my mother is not "actively dying." Whatever she does now is done passively. Her verbs, like those of her document, are passively constructed, if they are constructed at all. However I think about her now, I can hardly feel that I am doing so actively, for even when I think, there is an end to my thinking that is not completion but impasse. So, in a minor key (I am trying to talk optimism, but thus far failing!), the language of the document tries to reassure the family member (myself) with its final (#25) section, "Special Individualized Services," where I'm told that my mother uses the Salon services. This was another point of contention, as my mother no longer likes to be touched. But when I last saw her I watched as her hair was washed and combed and then "set" in old lady style by a Filipina woman who talked to me about her grandchildren. The "Expected Goal" at the end of this section includes none of the Maximums and Minimums, but "Other: "Resident will have improved self esteem," below which I read, like the refrain that chimes at the end of each other section, "Expected outcome in 6 months."

In six months, my mother will have improved self esteem. What am I to make of this language, however formalized, however much a part of a form, a formula, a pre-form/fab construction sent to everyone like me whose parent or relative is in Alzheimer's care? What does it mean to have "self-esteem" when one cannot get out of one's chair, or even effectively watch television? What does it mean to have "self-esteem" when you do not recognize a photograph of yourself, but think you are someone else, whatever your mind still makes of the concept of "someone" or "else"? To hold oneself in esteem is to have, to hold, to register verb forms, nouns, pronouns. When one's language is reduced to formulas about everything being well and glad you called and everything's ok, then what is self-esteem?

Self-esteem is itself a formal quality, then. It's a term best used on forms. What it might mean in any individual case is over-ridden by the necessity of its existence. We cannot survive if we do not feel esteem for ourselves. The idea of an Alzheimer's patient who does not esteem herself proves too much for us to bear. The words intend to console, even as they are empty rhetorical features, sections on a form that is poetic only in the sense that it is written, and in form. Informed by a culture that demands that we love ourselves, even as we suffer in our anger and sense of having failed to acquire happiness and BMWs, and both at once, we shall at least have the form.

Interminable game. Interminable form. Interminable questions. Can interminability be the ground for optimism, this dying that is not active and seems (but only seems) to have no end? In the spirit of Snediker's queer optimism, I will say yes. Like him, I do not mean Disney's simulacrum of happiness, a song in a tunnel, a couple of strapped on plastic ears, a wild ride. Rather, I mean that after so many decades of difficulty between us, my mother and I are at peace with one another. She has been reduced to her kindness (and how can one call that, so simply, a "reduction") and I have expanded to encompass her. She is my daughter now, my ward, my dependent, in more than tax terms. More forms. When she dies, as she will, I will mourn her, not feel that something was missing, that if we had only, that failure to communicate caused us not to thrive. We have found an ending, and while there is pathos in it, and while for now it isn't even an ending, there is peacefulness in it for me and I hope--somehow--for her. (What, I wonder, is the verb form of "it"?) All endings are formal and, while the document about my mother diminishes her, the form of her ending cannot.

[Editor's note: I note that I never got to a discussion of metaphor here. What I meant to do was to suggest that the making of metaphor--an interminable baseball game IS dementia, for example--offers an instant of joy that alters the experience of interminable sadness or even banality involved in witnessing of someone else's dementia. More on this another time, perhaps.]

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