Susan Schultz Edits Special Feature on Dementia at EOAGH

Poet and Tinfish editor Susan M. Schultz has edited a special feature over at the lovingly unpronounceable EOAGH, which is amplifying its website to feature more and more interesting writing--this collection is called “'If I don’t write it down, it’s shhhhh': On Writing Dementia" and includes work from Schultz herself, Goro Takano, Hank Lazer, Beatriz Terrazas, Caroline Maun, Dr. Frederick London and Gary Glazner, and many more. In her introduction, Schultz quotes Fred Wah:

This notion that home can operate as a foundation of identity allows that identity (since we seem to need it) might function as some kind of “soul,” part of the baggage we can’t leave (behind, or somewhere else) and that it (identity) therefore needs the constructs of home (place, workplace, school, kitchen, neighborhood, and so forth) eventually, in dementia, as a presence that is absent.

She then goes on:

Although dementia is a disease characterized by the mind’s erasure, the process by which erasure occurs is physical. Sufferers, while they still have words, describe them in terms of objects and space. Thomas DeBaggio, in his memoir, Losing My Mind, writes this: “More and more I am unconsciously mixing words that have similar sounds: our and out, would and wood, me and be, to name a few. This leaking alphabet of reality is something I might have expected in speech, not in writing” (181). The fluid alphabet, which runs rather than sticks, makes it increasingly hard for DeBaggio—a former journalist—to set thoughts to paper: “The struggle to find the words, to express myself, has become insurmountable. I must now be done with writing and lick words instead” (207). His last phrase is most curious. To lick words is to taste something sweet, or to defeat them. To lick words is to think of them as salt (on your wound). To lick words is to like them a lot, but not be able to wrestle them into patterns you want them to follow. To lack words is also to be caregiver, as Beatriz Terrazas, whose blog, My Mother’s Brain, is a must-read for anyone interested in Alzheimer’s. Terrazas is a journalist who lost her own words to her mother’s Alzheimer’s, and continues to battle what is usually termed “writer’s block.” This term takes on new urgency in the face of a loved one’s dementia.

The Alzheimer patient’s inability to recognize pattern leads to excess of pattern in corporate Alzheimer’s homes. Or so it seemed to me visiting my mother over the course of nearly five years in her “home” in northern Virginia. The four corridors of her ManorCare facility featured simple symbols on their walls so that residents could find their rooms. There were birds and boats in front of one wing, a clothes line and laundry basket in front of another. The furniture was hyper-suburban, the art plain, new and yet made to look old. Nostalgia had little to do with the past, more with keeping the present intact. (Perhaps this is always the case, but dementia inspires an exaggerated need to fix things in time, place.) The dining areas featured tables draped with heavy cloths, surrounded by sturdy upholstered chairs. A large television blasted away in the four living rooms. But many of the residents spent time, especially during late afternoon’s sundowning, trying to find their way home, away from The Home. As Fred Wah writes about his mother: “Since then we witnessed her loss and confusion about ‘where’ home is a number of times. She might be up half the night packing her bags and in the morning she’d be waiting: ‘I’m all packed. Are we ready to go home now?’ This from an apartment she had lived in for 5 years and in a town she had lived in for 15 years.” One woman in my mother’s home often wanted to borrow a couple of dollars to take a taxi home to the Bronx (from Northern Virginia) and became quite agitated when no one would do her that kindness. Early in her time at the Alzheimer’s home my mother called to say she was in Afghanistan and wanted to get home to Wooster, Ohio, which is where her mother had died decades earlier.

As David Clegg points out in the interview here about the Trebus Project, which he founded, Alzheimer’s sufferers often think in architectural, spatial, terms. Not only do they think a lot about “home” as a place, but their notion of language is also spatial, the past tense “down,” their thoughts “behind the wall.” He describes his process of editing transcripts of stories told to him by dementia patients as follows:

Once I had a block of stories I began to see patterns. For example, there is a strange tendency for people to create architectural metaphors to explain their memory loss. They might say a thought is under the floor or behind the wall, suggesting that it is physically present but inaccessible. People often describe events that happened years before as recent but removed in terms of distance, “Mum, lives a hundred miles away now”. Many of the stories are peppered with references to moving up or down, usually up, so the past is usually described as “down”. Many of the storytellers have told me that their room is above or even on top of (in the sense of superimposed) on the family home from their childhood. As a sculptor, I find the notion of symbolic space endlessly fascinating.

And so, Florence, a woman from my mother’s Alzheimer’s home, says in my “Stanzas in Meditation”: “He showed us that, I was wanting to go to the 5th floor; didn’t know how to, must be the 1st floor where they cook stuff.” (There was no 5th floor where she and my mother were living.) Frances, whose words Clegg carefully transcribed, combines analogies of forgetting as physical activity with a spatial, architectural sense of her past: “I always thought I had a very good memory. Now I have the experience that a piece of memory comes unstuck.

Read the full feature here.