The Lost Identity: Alzheimer’s Disease, Adult Children and the Past

In a small volume of notes taken after visits to the nursing home, Annie Ernaux chronicles the final years of her mother’s Alzheimer’s disease.^[1] Its most prominent feature is Ernaux’s comparison of her mother to a child which becomes more and more explicit over time. Initially, she associates her mother’s words with those ‘I would use when I was a child’ (15), later identifying her own gestures as those directed towards ‘a child who is sleeping’ (24), to approach the comparison of the mother to a ‘frightened woman clinging to me like a child’ (37). These periphrases, eventually, give way to the acceptance of their core truth: ‘I help her to take off her panties and to put them back on. A child. Period’ (53). Considering a diary as a place in which to contemplate one’s self, Ernaux comes to ‘learn some fundamental truth about myself’ (29), namely, that, even though her mother now ‘is my little girl [...] I CANNOT be her mother’ (23; emphasis original).^[2] Ernaux perceives the mother’s condition and lost awareness of being mother as ‘pushing me toward death’ (63). In addition, she interprets the mother’s cognitive changes as the accelerator of her aging and dying, which, in turn, threaten her identity as daughter.^[3]

In this respect, the persistence and continuity of every diary entry defer the end of Ernaux’s chronicling the mother’s biography and her actual death, even though the literal plotting of her mother’s decline necessarily brings her end ever nearer.^[4] While this discrepancy strongly highlights Ernaux’s emotional urgency, she nonetheless only published these fragments eleven years after her mother’s death, as if to confirm our understanding of the privacy of such notes. In addition, the sequential presentation of differently accentuated accounts convincingly epitomises how continued caregiving may change the caregiver’s attitude. French news presenter Fran^oise Laborde, for example, first relates personal feelings regarding her abrupt encounter with the mother’s Alzheimer’s disease, only later offering a more detached medico-clinical testimony.^[5] Similarly, Mary Wilhoit kept a blog reporting the caring for her mother, which she only later published as a book. Asserting that a book makes her experiences more widely accessible, her writing as well as publication strategy nevertheless suggest she may be less sensitive to ethical issues: she reduces the patient to ‘the mom [... ] a mindless automaton roaming around’ and posts to the blog while her mother is still alive.^[6]

Ernaux’s notes cannot, as Hawkins would have it, ‘create a meaningful death’, because her mother’s style of dying did not reflect her actual personality.^[7] This is perhaps a further reason why Ernaux initially composed, shortly after her mother’s death, a narrative about her mother’s life before dementia.^[8] Its title, A Woman’s Story, suggests detachment and distance, alerting the reader to the writer’s search for form, in that ‘the private diary is a practice [that] does not reflect the life as an autobiographical narrative would do’.^[9] Ernaux follows the aspiration to be ‘only the archivist’ (15), and her use of bullet points reads as the author-narrator’s acknowledgement of her limited knowledge of the mother’s past. It is worth noting that the image of the archivist features in other adult-child life-writing, conveying feelings of loss in relation to the parent’s own memory and life history, to which I return more fully in Chap. 3. Giovanna Venturino, for example, writes that:

in modo inversamente proporzionale alla progressiva perdita di ricordi e conoscenze, la mia mamma estende sempre piu il suo ‘mare di nulla’ dal quale, ogni tanto, come tristi relitti di un tempo ormai inesorabilmente andato, riaffiorano pezzi di cio che e stata; e come uno scrupoloso, attento studioso, sono li, pronta a raccoglierli [... ].

[In a way inversely proportional to the progressive loss of memories and knowledge, my mother increasingly expands her ‘sea of nothingness’, from which, every now and then, re-emerge, like sad relics of a time by now inescapably lost, pieces of all that she has been; and like a scrupulous and attentive scholar I am there, ready to collect them (... ).]^[10]

The Italian primary school teacher’s use of the archivist image suggests her perceiving of the mother’s condition as one of a living death - both for its connection to the image of the ‘sea of nothingness’ and in its comparison to Ernaux’s own use of the image. The French writer employs it to depict her activities after the mother’s actual death. Specifically, Ernaux narrates, after having opened with the mother’s death, the timeline of her life and dying. This construction closes the narrative circle, and mirrors - acknowledging the circle of life - the beginning of the daughter’s healing.

Ernaux, eventually, overcomes her clinging to the professed objectivity, ‘to cry because she was my mother, the same woman I had known in my childhood’ (80). These feelings, in turn, strongly resemble the emotional urgency that speaks from her original diary.

Ernaux is particularly aware of the intricate relationship between her act of writing - as a working through of her own past as daughter of a healthy mother and (much less) the years of the mother’s illness - and her written words as a recreation of identity. In fact, the writer makes her narrative the counterstatement to what the disease did to her mother, as it ‘puts my mother’s illusory presence before her real absence’ (88). It restores the mother to her original image, before dementia. At the same time, this act makes herself daughter again - a reading encouraged by insight that the female search for identity occurs ‘through relation to the chosen other’.^[11] In this awareness, it is most appropriate for Ernaux to publish the private notes, because they reflect a constituent part of her suffering.

The title of Carol Wolfe Konek’s account Daddyboy similarly alerts the reader to the daughter’s perception of the father’s return to childhood.^[12] But it also suggests how Konek, in distinction to Ernaux, continues to see the grown-up father through what she understands as childlike behaviour. This is particularly true, because the expression belongs to actual childhood conversations between ‘Daddy’s girl’ and ‘Daddyboy’. The use of this metaphoric oxymoron is particularly revealing compared to its usage in Nucci A. Rota’s narrative of her mother’s Alzheimer’s disease. In affirming that, ‘[s]cendendo tutti i gradini della malattia e diventata quella che io ora chiamo la bimbamamma’ [in descending all steps of the illness, she has become what I now call mommy girl], Rota professes the perception of her mother’s ‘other’ personality through illness.^[13] This reading underlines how Konek sees her father as a continued personality.

Konek carries the title’s antithetic message on a narrative level, when portraying the disruptive power of Alzheimer’s disease by connecting different storylines, whose alternations do not follow a systematic pattern. The story of her growing up and being shaped by the confrontation with her father is interwoven with the story of her parent’s progressing condition, as well as Konek’s present-day dreams, her childhood thoughts and sections on the fear of losing her own self-awareness. Nevertheless, these storylines follow their individual timelines, suggesting that the narrator surrenders to her urgent need to maintain a sense of continuity that counterbalances her sense of biographical disruption.²¹ This disruption is carried forward, as the patient’s active presence decreases throughout the text, its second half reporting about him only from the distance of the third person, which mirrors involution and anticipates his death.

As Konek strings together snippets of past and present, her narrative resembles a series of photographs, each no longer than half a page told in the present tense. The father’s ‘gift to his family is history’ (13), as he recorded memories through photography, a form which creates continuity, since Konek takes on the father’s memory-making role. Just as the camera shoots one-moment-in-time images, she perceives of Alzheimer’s disease itself as a condition that leaves room for no more than the current moment, when describing her father’s attention, for example, as a ‘flicker of knowing’ (137). In this context, it is worth noting that Linda Grant’s Remind Me Who I Am, Again similarly has the purpose of maintaining the mother’s memory, as it describes her dementia which is caused by transient ischemic attacks, while recording the family’s past, also in assembling photographs.²²

In comparison to Ernaux, Konek continues to perceive of her ill parent as teacher, claiming that ‘[w]hen he had given all he could give consciously, he still gave us an example of endurance, of suffering, of awful mortality’ (161). The very notion of continuity and closure reaches full circle, when, in her concluding lines, the daughter completely identifies herself with the father: ‘I adored him. I worshiped him. I respected him. I judged him. I hated him.

other”: identity and difference in dementia’, Nursing Philosophy, 10 (2009), pp. 26-33 (Naue and Kroll 2009).

• 21 Michael Bury, ‘Chronic illness as biographical disruption’, Sociology of Health and Illness, 4 (1982), pp. 167-182 (Bury 1982).
• 22 Linda Grant, Remind Me Who I Am, Again [1998] (London: Granta Books, 1999) (Grant 1999).

I accepted him. I pitied him. I released him. I become him’ (161). This oscillating parallelism summarises the process and boon of Konek’s working through the life-long father-daughter confrontation in the light of the father’s illness. The negotiation with his condition becomes her opportunity for personal growth; an experience with lasting identity-shaping impact - as her choice to end the narrative with this statement in the present tense signals.

Read from this perspective, the informative wider societal purpose of Konek’s work gains further meaning as she becomes the teacher herself. She lets us glimpse into support group meetings or scientific conferences, where the impression of medico-scientific and healthcare discourses that are insufficiently aware of caregiver burden prevails. As such, Konek’s choice to report conversations with her mother - the primary caregiver of Konek’s father - in direct speech furthers, in its perceived directness, the reader’s appreciation of what society truly needs then and now: a discussion on the caregiver’s pain and distress as well as the ethical considerations relating to end-of-life quality and care. Of course, the literalness of the words spoken must be questioned. But Konek would have been committed to maintaining fidelity to the gist of the conversations with her mother. As Sidonie Smith and Julia Watson point out, autobiographical narration ‘cannot be read solely as either factual truth or simple facts. As an intersubjective mode, it lies outside a logical or juridical model of truth and falsehood’.^[14] What is more, Barbara Ehrenreich appraises Konek’s narrative as ‘a powerful lesson about what it means to be human’ on the book cover; the journalist’s verdict being all the more meaningful in the light of her criticising the culture of survivor literature that leaves hardly any room for less triumphalist types of illness narrative.^[15]

While Ernaux focuses predominantly on the daughter’s self-survival in view of losing the parent to illness and death, Konek draws strong continuity within and beyond the parent’s illness, likely in reverential love for the nurturing father.^[16] Nonetheless, Konek is prepared to send the parent to a nursing home, with this decision often being supported by the societal concept of the career-oriented young mother. Andrea Gillies, for example, emphasises, as quoted above, generational duties, but eventually places her mother-in-law - conscientious of neglecting her own close family - in a care home. Konek’s mother, in contrast, and spouses more generally consider caregiving as their obligation.^[17] I, thus, turn to analysing three spousal accounts, whose different creative approaches per se suggest scope for improved, diversified caregiver support. They also highlight how a shared pre-illness experience (next to the parent-child relationship) structures the caregiver’s perception of continuity or the loss thereof.

• [1] Annie Ernaux, Je ne suispas sortie de ma nuit (Paris: Editions Gallimard, 1997); Engl. trans.as I Remain in Darkness (New York: Seven Stories Press, 1999) (Ernaux 1999); referencesfrom this English edition are incorporated in the text.
• [2] Linda Anderson, Autobiography (Abingdon: Routledge, 2001), p. 35 (Anderson 2001).
• [3] In an insightful analysis of Charles P. Pierce’s narrative Hard to Forget. An Alzheimer’sStory (New York: Random House, 2000) (Pierce 2000), Lucy Burke expands on how theadult child negotiates with the genetic risk ofhaving inherited Alzheimer’s disease; see: ‘“Thecountry of my disease”: genes and genealogy in Alzheimer’s life-writing’, Journal of LiteraryDisability, 2.1 (2008), pp. 63-74 (Burke 2008b).
• [4] Susannah B. Mintz made similar observations for May Sarton’s diaries; see: UnrulyBodies. Life Writing by Women with Disabilities (Chapel Hill: The University of NorthCarolina Press, 2007), Chap. 5, p. 186 (Mintz 2007).
• [5] Fran^oise Laborde, Pourquoi ma mere me rend folle [Why my mother drives me crazy](Paris: Flammarion, 2002) (Laborde 2002), and Ma mere n’est pas un philodendron [Mymother is not a philodendron] (Paris: Flammarion, 2003) (Laborde 2003).
• [6] Mary Wilhoit, As She Was Dying. An Alzheimer’s Journal (Lincoln: iUniverse, 2008), p. 7(Wilhoit 2008).
• [7] Hawkins, Reconstructing Illness, esp. Chap. 4 (Hawkins 1999).
• [8] Annie Ernaux, Une femme (Paris: Editions Gallimard, 1987); Engl. trans. as AWoman’s Story (New York: Seven Stories Press, 1991) (Ernaux 1991); referencesfrom this English edition are incorporated in the text.
• [9] Philippe Lejeune cited in: Smith and Watson, Reading Autobiography, p. 193 (Smith andWatson 2001).
• [10] Giovanna Venturino, II tuo mare di nulla. La mia mamma e l’Alzheimer [Your seaof nothingness. My mother and Alzheimer’s] (Rome: A&B Editrice, 2012), p. 73(Venturino 2012).
• [11] Mary G. Mason, ‘The other voice: autobiographies of women writers’, in Autobiography.Essays Theoretical and Critical, ed. by James Olney (Princeton: Princeton University Press,1980), pp. 207-235, p. 210 (Mason 1980).
• [12] Carol Wolfe Konek, Daddyboy. A Family’s Struggle with Alzheimer’s (Saint Paul: GraywolfPress, 1991) (Konek 1991); references incorporated in the text.
• [13] Nucci A. Rota, La bimbamamma. Cosa vuol dire convivere con l’Alzheimer. Il diario di unafiglia [The mommy girl. What it means to share your life with Alzheimer’s. A daughter’sdiary] (Naples: Iuppiter Edizioni, 2009), p. 17 (emphasis original) (Rota 2009); on the‘otherness’ perceived in dementia, see: Ursula Naue and Thilo Kroll, ‘“The demented
• [14] Smith and Watson, Reading Autobiography, p. 13 (Smith and Watson 2001).
• [15] Barbara Ehrenreich, Smile or Die. How Positive Thinking Fooled America and the World(London: Granta Books, 2010) (Ehrenreich 2010).
• [16] On tensions in mother-daughter relationships, see: Ruth E. Ray, ‘The uninvited guest:mother/daughter conflict in feminist gerontology’, Journal of Aging Studies, 17 (2003),pp. 113-128 (Ray 2003).
• [17] Neena L. Chappell and Valerie K. Kuehne, ‘Congruence among husband and wifecaregivers’, Journal of Aging Studies, 12.3 (1998), pp. 239-254 (Chappell and Kuehne1998); on the model of spousal caregiving as structuring later adult-child perception ofduties, see: Liliana E. Pezzini, Robert A. Pollak and Barbara S. Schone, ‘Long-term care ofthe disabled elderly: do children increase caregiving by spouses?’, Review of Economics of theHousehold, 7.3 (2009), pp. 323-339 (Pezzini et al. 2009).