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Aliceheimer\u2019s. Alzheimer\u2019s Through the Looking Glass<\/em><\/p>\n By Dana Walrath. Published by The Pennsylvania State University Press, 2016.<\/p>\n <\/p>\n Reviewed by Dr Martina Zimmermann.<\/p>\n <\/p>\n Dana Walrath\u2019s Aliceheimer\u2019s. Alzheimer\u2019s Through the Looking Glass<\/em> is the second graphic memoir by an adult child about her mother\u2019s Alzheimer\u2019s disease, after Sarah Leavitt\u2019s Tangle. A Story About Alzheimer\u2019s, My Mother, and Me <\/em>(2012); a further contribution to the steadily growing body of dementia caregiver life-writing. The best-known representative of this body is surely John Bayley\u2019s Iris: A Memoir of Iris Murdoch<\/em> (1998) \u2013 given the account\u2019s prominent filmic adaptation, its unceasing consideration in literary scholarship, its persistent presence in the lecture theatre and seminar room, and the countless citations other caregivers take from this text. For these caregivers, Bayley\u2019s narrative has provided inspiration, and at times moral justification \u2013 especially for how they tell about the patient\u2019s loss of self. Walrath foregoes reference to the experiences of other caregivers. Instead, she connects her account to Lewis Carroll\u2019s Alice\u2019s Adventures in Wonderland<\/em> (1865) and Through the Looking Glass<\/em> (1871). Allusion to Alice\u2019s Adventures<\/em> in caregiver narratives is not new: C\u00e9cile Huguenin made the connection in Alzheimer mon amour<\/em> [Alzheimer my love] (2011) and Sally Magnusson in Where Memories Go. Why Dementia Changes Everything<\/em> (2014). Both wife and daughter refer to being lost in an environment that resembles Carroll\u2019s nonsense world, exposed to the nonsensical organisation of caregiving and lacking support from practicing clinicians. Walrath, however, maps her narrative onto Carroll\u2019s story to depict the condition itself. In doing so, she offers an unexpected perspective on Alzheimer\u2019s disease; she seemingly creates a new condition: Aliceheimer\u2019s. Concurrently, Aliceheimer\u2019s<\/em> acknowledges that Alzheimer\u2019s disease creates a new person, indelibly linked to the Alzheimer\u2019s disease experience. Alice is no longer \u201cher old self\u201d \u2013 a \u201cproud, hardworking career woman [who] had done all the cooking and cleaning for her family of five, without any outside help\u201d (11). Having fallen down the rabbit hole, she now is \u201cher new self\u201d (27): Aliceheimer.<\/p>\n A pronounced feature of Alice\u2019s dementia is disease-related hallucinations and fears, and Walrath dedicates a large part of her account to this aspect of her mother\u2019s illness experience. This choice of presentation makes Walrath\u2019s narrative unique. In fact, affective symptomatology, that is auditory hallucinations as well as ideas of jealousy, had been described by Alois Alzheimer in the landmark case of Auguste Deter in 1906. However, cognitive and histopathological features took priority in medico-scientific and healthcare descriptions of dementia patients in the first half of the twentieth century and beyond. And while the patient\u2019s mind and psyche entered the literary arena much earlier and more explicitly (since the 1920s) as compared to when and how old-age psychiatrists and social medics began to take an interest in this area, they continue to remain absent from most caregiver accounts. Walrath describes some of her mother\u2019s hallucinations, but more importantly, she gives them new meaning, depicting them as Alice\u2019s space time travel and a special power (37). What happens under the spell of Alzheimer\u2019s disease happens in wonderland. Mapping her mother\u2019s experiences onto the adventures of Carroll\u2019s character is a gambit that enables the caregiver to counter-narrate the patient\u2019s social death and loss of self in a culture \u201cwhere death is taboo, and aging is not celebrated\u201d (47).<\/p>\n Walrath confirms what anthropologist Janelle Taylor explored in her prize-winning essay \u201cOn Recognition, Caring, and Dementia\u201d (2008), namely that recognition is considered to be the \u201cpublic threshold\u201d (69). Specifically, the first thing Walrath is asked when her interlocutor learns that Alice has been placed in a nursing home is: \u201cdoes she still recognize you?\u201d (69) An anthropologist herself, Walrath asserts that \u201cmore than recognition of individuals and their social roles, it is recognition of intention and behavior that matters\u201d (69). This insight is core to Walrath\u2019s caregiving practice, as she assigns intention to Alice\u2019s hallucination-caused behaviour \u2013 a strategy also pursued by Reeve Lindbergh in No More Words. A Journal of My Mother, Anne Morrow Lindbergh<\/em> (2001). Lindbergh\u2019s literary account of her mother\u2019s dementia features among those we perceive of as particularly enabling because it seeks to identify the patient\u2019s continued identity and self within dementia. Similarly, Walrath concedes that \u201cthere is loss with dementia, but what matters is how we approach our losses and our gains. Reframing dementia as a different way of being, as a window into another reality, lets people living in that state be our teachers \u2013 useful, true humans who contribute to our collective good, instead of scary zombies.\u201d (4) This approach echoes that of other caregivers, like Arno Geiger in Der alte K\u00f6nig in seinem Exil<\/em> [The old king in his exile] (2011), Ruth Sch\u00e4ubli-Meyer in Alzheimer. Wie will ich noch leben \u2013 wie sterben<\/em> [Alzheimer\u2019s. How will I continue to live \u2013 how will I die?] (2010) or C\u00e9cile Huguenin, who depict their parent or partner as teachers. But in comparison to these caregivers Walrath does not give her mother her own narrative space. Aliceheimer\u2019s<\/em> remains Walrath\u2019s account. And as such it reveals that a balance between continuity of identity for the patient as parent and continuity for the caregiver as child is not easily found \u2013 neither in the illness experience itself nor in an account thereof.<\/p>\n Walrath writes beautifully about how she creates continuity within and for her mother\u2019s behaviour, how she discovers gain within loss. But we are only told about the \u201cmore benign hallucinations\u201d (5) relating for example to the patient\u2019s sundowning (35), not the difficult ones. We read about Alzheimer\u2019s disease as \u201ca time of healing and magic.\u201d (4) But we are not told about the profound challenges of dementia caregiving. We gain such information only from the acknowledgements, where Walrath concedes that \u201c[c]aring for Alice required a community [\u2026that] gave Alice space to be herself and to grow even through loss.\u201d (71) Where are the caregiver burden and identity crisis of the child in this narrative? Are these challenges not explored in more detail, because we are expected to fill them in from our knowledge of the mainstream dementia narrative? I believe that the key to these questions is found in the narrative\u2019s collage technique.<\/p>\n There is a clear compositional strategy in Aliceheimer\u2019s<\/em>: on the left the patchwork image of pages cut from Carroll\u2019s text incorporated into Walrath\u2019s own drawings and colouring; on the right Walrath\u2019s written account in one-page long snippets and impressions. In a first instance, this arrangement gives the disease-inflicted, hallucination-provoked chaos a systematic structure. But more importantly, it enables Walrath to tell two different stories. The author encourages us to \u201c[p]age through to feel the storyline as it exists in the drawings on their own\u201d (5). But the collage depicts a truth on which the textual narrative \u2013 effectively like every Alzheimer\u2019s disease memoir \u2013 remains silent: the patient\u2019s complete disintegration and dissolution. The collage arrangement leaves space for the onlooker to imagine the full truth conveyed in Aliceheimer\u2019s<\/em>. In the end, Aliceheimer\u2019s is Alzheimer\u2019s: a disease of relentless loss and decline.<\/p>\n Roughly a third of the account covers the time from when Alice is placed in what Walrath terms \u201cmemory care\u201d. From the time of Alice\u2019s placement the pictorial narrative tells an explicit story of decline, regression and involution, of what Walrath only once spells out in writing, namely that \u201cwith each passing day, Alice was becoming developmentally younger\u201d (61). The collage images show Alice as a young bride, a school girl, in her babyhood; Alice\u2019s eventual bodily and mental disintegration become clear from images depicting Alice in the immediate post-fertilisation phase with the zygote (a spiral cut from a page of Carroll\u2019s text) surrounded by sperm cells (64), and another image reducing Alice to mere DNA (the cut-out text from Carroll\u2019s narrative that links the molecule\u2019s two strands together featuring key characters in Alice\u2019s adventures [66]). Instead of telling about Alice\u2019s disintegration in the nursing home in her written account on the right, Walrath now takes to peering through the looking glass in yet another way. She sets out to explore Alice\u2019s past and describes her personality in the past. With this account, she can place the \u201cold\u201d Alice before the increasingly disintegrating Aliceheimer. Not only do photographs of the young Alice begin to replace Walrath\u2019s drawn image of her mother. In this final third, some chapters extend over more than one page, indicating that the caregiver needs to tell more of the story than the image alone can or should tell. Where the narrative snippet spreads onto the next page, the accompanying image is repeated in magnified form, suggesting that eventually the caregiver\u2019s story must replace the patient\u2019s world. Walrath, indeed, depicts her mother as increasingly transparent early on (10-15) and \u2013 like other caregivers such as Elena De Dionigi in Prima di volare via. <\/em>Quello che l\u2019Alzheimer non ci pu\u00f2 rubare<\/em> [Before flying away. What Alzheimer\u2019s cannot steal from us] (2012) \u2013 as flying away (18-22).<\/p>\n Aliceheimer\u2019s<\/em> remains Walrath\u2019s account also for the fact that it creates continuity for the daughter that reaches beyond her professional interests. In the first place, it tries to give meaning to the caregiving process, as the daughter now has to mother the mother, or as Walrath \u2013 mother of three boys herself \u2013 puts it: \u201cI had always wanted a daughter\u201d (57). Equally, Walrath describes the period of caregiving as a time when she \u201cwanted to create a bond with my mother, to redo the past, and to fill the hole inside of me\u201d (1). And as such, Aliceheimer\u2019s<\/em> also remains Walrath\u2019s account when the narrative turns into the daughter\u2019s search for the mother\u2019s past as the story of her own origin; a past that will be forgotten with Alice\u2019s memory loss; a past that harbours Alice\u2019s as much as her daughter\u2019s identity as Armenian. In this regard, Walrath\u2019s narrative fits into the tradition of adult-child caregiver narratives that arose during the 1990s\u2019 memory boom; narratives about a parent\u2019s dementia whose forgetting becomes linked to the danger of an entire generation\u2019s loss of collective memory about the trauma and fate of the Jewish people \u2013 if we think about Linda Grant\u2019s Remind Me Who I Am, Again<\/em> (1998) or Lisa Appignanesi\u2019s Losing the Dead<\/em> (1999). Like many caregivers before her Walrath becomes the \u201carchivist\u201d, not only of the mother\u2019s memories, but an entire people\u2019s history: she travels to Armenia to \u201cmake the missing pieces of our past into more than ideas\u201d (61).<\/p>\n Peter Keating has described Carroll\u2019s Alice as having \u201cpioneered the new mood of freedom and exploratory play in children\u2019s books\u201d. Walrath\u2019s narrative could be read as representing a new mood of freedom in how to deal with Alzheimer\u2019s disease. It is a narrative about Alice\u2019s different identities, views and truths of the world; a narrative showing that \u201c[c]onflicting realities can coexist in a single image just as they do for people with dementia and their caregivers\u201d (5). Walrath asserts that her mother \u201cescapes the captivity of Alzheimer\u2019s through story\u201d (29). Also Walrath herself escapes the captivity of Alzheimer\u2019s through story: the captivity of the medico-scientific and wider cultural narrative of decline, diminishment and loss. To my mind, Walrath\u2019s reference to Carroll\u2019s \u201cLobster Quadrille\u201d (47) is most revealing. In this adventure, Carroll\u2019s protagonist offers to tell her experiences on condition of not \u201cgoing back to yesterday, because I was a different person then\u201d. Living well with the patient comes down to living in the present moment \u2013 living within the world and experience of Aliceheimer. When this is not possible any longer, Walrath\u2019s memory of her mother\u2019s old self, Alice, will come to replace both Alice\u2019s memory and Aliceheimer herself.<\/p>\n If this is the first Alzheimer\u2019s disease narrative you pick up you will come away with the feeling of having read a kind of fairy story \u2013 about Alzheimer\u2019s through the looking glass. If you read it against the last decade\u2019s caregiver life-writing, you will see it fitting into how adult children increasingly assert their parent\u2019s continued identity and self within dementia. Reading it in the context of nearly thirty years of Alzheimer\u2019s disease life-writing, Aliceheimer\u2019s<\/em> appears original in its collage approach, and buoyant in its message of how to \u201cbring back the humanity of a person with dementia\u201d (5). But it also matches what has developed into a kind of prototype caregiver dementia narrative. It tells of biographical disruption; searches for continuity for both parent and child; aims at preserving collective memory; presents \u2013 as John Wiltshire has discussed in relation to John Bayley\u2019s memoir \u2013 \u201cthe issues of identity which are implicit in all illness experience with particular acuteness\u201d. Aliceheimer\u2019s<\/em> is a story about the possibility to find quality of life in dementia caregiving; the possibility to see Alzheimer\u2019s disease as creating a new self, a self that can be lived with and written about up to the moment when we feel threatened in our own self.<\/p>\n <\/p>\n <\/p>\n The final\u00a0review in this series – Alzheimer’s disease and graphic memoirs – will be Sarah Leavitt’s Tangles<\/em>.<\/p>\n The first in the series – Alex Demetris’s Dad’s Not There Anymore<\/em> – was posted here<\/a>.<\/p>\n <\/p>\n![\"aliceslide1\"](\"https:\/\/blogs.bmj.com\/medical-humanities\/files\/2016\/10\/aliceslide1-300x246.jpg\")
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