Basements and Attics, Closets and Cyberspace: Explorations in Canadian Women’s Archives

“You can do with all this rambling whatever you want”: Scrutinizing Ethics in the Alzheimer’s Archives

You can do with all this rambling whatever you want”: Scrutinizing Ethics in the Alzheimer’s Archives Kathleen Venema Archiving Alzheimer’s Broached the subject of her memory over lunch yesterday with Mom. She seems like a stranger when she asks, defensively, “Do you talk about this with [your sister]? [Your brother]?” Mostly, though, except for some confusion —she has to work hard to remember that the butter pat is a butter pat and what a butter pat is for—she seems like herself. –K. Venema, Journal entry Dec. 17, 04 My mother was diagnosed with Alzheimer’s disease in late July 2005. Alzheimer’s disease, as many families know well,1 is a progressive, degenerative disease of the brain characterized by two distinct aberrations: in the first, brain cells shrink or disappear and are replaced by dense, irregularly shaped spots, or plaques; in the second, thread-like tangles appear in otherwise healthy brain cells and eventually choke off those cells’ functioning .2 As it destroys brain cells, Alzheimer’s affects memory, language skills, cognitive activity, and behaviour, so that work life, family life, social 2 8 1 “ 2 8 2 K at h L e e n V e n e M a life, community involvements, hobbies, and sports are all increasingly compromised.3 Certain medications can halt Alzheimer’s “progress” for up to two years in some people, but the disease eventually resumes producing the characteristic plaques and tangles that obstruct ever more of the brain’s messaging capacity.4 The Alzheimer’s Association website describes the situation succinctly: “Alzheimer’s disease has no survivors.... It slowly and painfully takes away a person’s identity, ability to connect with others, think, eat, talk, walk and find his or her way home.”5 The website writers likely mean the Alzheimer’s sufferer’s literal home, but they might also include every other place, past and metaphorical, that the sufferer has ever understood as “home.” For a family member, a diagnosis of Alzheimer’s marks the beginning of an excruciatingly protracted period of mourning as a beloved other disappears . It often also marks the beginning of sometimes frantic work to fight the disease: a diagnosis of Alzheimer’s means, after all, that a life—or at least, the memory of a life—needs to be saved. Perhaps not surprisingly then, a diagnosis of Alzheimer’s frequently prompts a turn, usually non-theoretical , to narrative as both a therapeutic structure and a means of shoring up self, identity, and relationship, and to various kinds of archives as potential sites of knowledge.6 Ian Frazier, who has written about his own father’s struggle with Alzheimer’s, describes an impetus for the narrative process in his Foreword to Joyce Dyer’s story of her mother. “An offhand trick of [Alzheimer’s] disease,” says Frazier, “is to leave this memory [of disintegration and helplessness and confusion] freshest in the minds of those who survive . Afterwards...[g]rief may make a historian of you, an archaeologist of the ordinary details that evoke the vanished person’s life” (Foreword xi–xii). From a theoretical perspective, meanwhile, Alzheimer’s offers a gold mine of possibility, enabling a quintessential, extended, and unrepeatable engagement with historical indeterminacy, the constructed nature of subjectivity , and the extraordinarily biased nature of both partial and provisional truths. From a theoretical perspective, Alzheimer’s offers a unique encounter with Jacques Derrida’s resonant claim that “the archive takes place at the place of originary and structural breakdown of memory” (11). But I am deliberately literal when I invoke Derrida, and therefore I am almost certainly missing the point: Derrida could not possibly mean that “the archive” takes place in the brains of Alzheimer’s sufferers.7 ★ ★ ★ What a cliché: my mother’s driving me crazy. No: my mother behaves as if she might be going crazy herself. Breathtakingly disturbing to hear her ask on Tuesday evening, after I’d rehearsed with her several times my proposed “ Y o u c a n d o W i t h a L L t h i s r a M B L i n g W h at e V e r Y o u W a n t ” 2 8 3 plan for Friday afternoon (“meet me at Carriere’s at 3 and then we’ll go for coffee at Theatro; if Dad can pick us up at 5, we can go...