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Of Wives and Daughters: Stereotypes of the Caring Female?

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The Poetics and Politics of Alzheimer’s Disease Life-Writing

Part of the book series: Palgrave Studies in Literature, Science and Medicine ((PLSM))

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Abstract

This chapter illustrates how the perceived degree of caregiver burden impacts on the caregiver’s perception and, thus, presentation of the patient. The insights so gained call for stronger socio-economic caregiver support. ‘Of Wives and Daughters’ also aims to separate out conceptual differences between parental and spousal caregiving: shared memories of a life-long relationship colour patient presentation, also because they enable the maintaining of pre-narrative identity; daughters may care mindful of their generational duties, but see their own identity as child at stake. This chapter also argues that the increasing societal awareness of dementia and a related awareness of caregiver needs led to a shift from a stereotypical caregiver- to a more patient-centred approach in caregiving, which is strongly reflected in more recent caregiver accounts.

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Notes

  1. 1.

    Andrea Gillies in an interview following the publication of her memoir; see: Amelia Gentleman, ‘The raw horror of Alzheimer’s’, The Guardian, 1 June 2010 (Gentleman 2010).

  2. 2.

    Margarita Retuerto Buades, Mi vida junto a un enfermo de Alzheimer [My life next to an Alzheimer’s patient] (Madrid: La Esfera de los Libros S. L., 2003), pp. 12–14 (Buades 2003).

  3. 3.

    Wiltshire, ‘Biography’, p. 413 (Wiltshire 2000); Michael Ignatieff, Scar Tissue [1993] (London: Vintage, 1994) (Ignatieff 1994); unlike Wiltshire, scholars like Amelia DeFalco treat Ignatieff’s text as fiction; see: ‘Dementia, caregiving, and narrative in Michael Ignatieff’s Scar Tissue’, Occasion: Interdisciplinary Studies in the Humanities, 4 (2012), http://arcade.stanford.edu/occasion/dementia-caregiving-and-narrative-michael-ignatieff%E2%80%99s-scar-tissue (accessed August 2016) (DeFalco 2012).

  4. 4.

    Ibid., pp. 419, 420 (Wiltshire 2000).

  5. 5.

    I consider the first article by a literary scholar on ‘Alzheimer’s disease’ narratives to be: Kathleen Woodward, ‘Reminiscence and the life review: prospects and retrospects’, in What Does It Mean to Grow Old? Reflections from the Humanities, ed. by Thomas R. Cole and Sally Gadow (Durham: Duke University Press, 1986), pp. 135–161 (Woodward 1986).

  6. 6.

    Michael Hirst, ‘Trends in informal care in Great Britain during the 1990s’, Health and Social Care in the Community, 9.6 (2001), pp. 348–357, p. 354 (Hirst 2001); see also: Minna M. Pöysti et al., ‘Gender differences in dementia spousal caregiving’, International Journal of Alzheimer’s Disease, article 162960 (2012) (Pöysti et al. 2012); they discuss: Kevin L. Baker and Noelle Robertson, ‘Coping with caring for someone with dementia: reviewing the literature about men’, Aging & Mental Health, 12.4 (2008), pp. 413–422 (Baker and Robertson 2008).

  7. 7.

    Hawkins, Reconstructing Illness, p. 90 (Hawkins 1999).

  8. 8.

    Annie Ernaux, Je ne suis pas sortie de ma nuit (Paris: Éditions Gallimard, 1997); Engl. trans. as I Remain in Darkness (New York: Seven Stories Press, 1999) (Ernaux 1999); references from this English edition are incorporated in the text.

  9. 9.

    Linda Anderson, Autobiography (Abingdon: Routledge, 2001), p. 35 (Anderson 2001).

  10. 10.

    In an insightful analysis of Charles P. Pierce’s narrative Hard to Forget. An Alzheimer’s Story (New York: Random House, 2000) (Pierce 2000), Lucy Burke expands on how the adult child negotiates with the genetic risk of having inherited Alzheimer’s disease; see: ‘“The country of my disease”: genes and genealogy in Alzheimer’s life-writing’, Journal of Literary Disability, 2.1 (2008), pp. 63–74 (Burke 2008b).

  11. 11.

    Susannah B. Mintz made similar observations for May Sarton’s diaries; see: Unruly Bodies. Life Writing by Women with Disabilities (Chapel Hill: The University of North Carolina Press, 2007), Chap. 5, p. 186 (Mintz 2007).

  12. 12.

    Françoise Laborde, Pourquoi ma mère me rend folle [Why my mother drives me crazy] (Paris: Flammarion, 2002) (Laborde 2002), and Ma mère n’est pas un philodendron [My mother is not a philodendron] (Paris: Flammarion, 2003) (Laborde 2003).

  13. 13.

    Mary Wilhoit, As She Was Dying. An Alzheimer’s Journal (Lincoln: iUniverse, 2008), p. 7 (Wilhoit 2008).

  14. 14.

    Hawkins, Reconstructing Illness, esp. Chap. 4 (Hawkins 1999).

  15. 15.

    Annie Ernaux, Une femme (Paris: Éditions Gallimard, 1987); Engl. trans. as A Woman’s Story (New York: Seven Stories Press, 1991) (Ernaux 1991); references from this English edition are incorporated in the text.

  16. 16.

    Philippe Lejeune cited in: Smith and Watson, Reading Autobiography, p. 193 (Smith and Watson 2001).

  17. 17.

    Giovanna Venturino, Il tuo mare di nulla. La mia mamma e l’Alzheimer [Your sea of nothingness. My mother and Alzheimer’s] (Rome: A&B Editrice, 2012), p. 73 (Venturino 2012).

  18. 18.

    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).

  19. 19.

    Carol Wolfe Konek, Daddyboy. A Family’s Struggle with Alzheimer’s (Saint Paul: Graywolf Press, 1991) (Konek 1991); references incorporated in the text.

  20. 20.

    Nucci A. Rota, La bimbamamma. Cosa vuol dire convivere con l’Alzheimer. Il diario di una figlia [The mommy girl. What it means to share your life with Alzheimer’s. A daughter’s diary] (Naples: Iuppiter Edizioni, 2009), p. 17 (emphasis original) (Rota 2009); on the ‘otherness’ perceived in dementia, see: Ursula Naue and Thilo Kroll, ‘“The demented other”: identity and difference in dementia’, Nursing Philosophy, 10 (2009), pp. 26–33 (Naue and Kroll 2009).

  21. 21.

    Michael Bury, ‘Chronic illness as biographical disruption’, Sociology of Health and Illness, 4 (1982), pp. 167–182 (Bury 1982).

  22. 22.

    Linda Grant, Remind Me Who I Am, Again [1998] (London: Granta Books, 1999) (Grant 1999).

  23. 23.

    Smith and Watson, Reading Autobiography, p. 13 (Smith and Watson 2001).

  24. 24.

    Barbara Ehrenreich, Smile or Die. How Positive Thinking Fooled America and the World (London: Granta Books, 2010) (Ehrenreich 2010).

  25. 25.

    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).

  26. 26.

    Neena L. Chappell and Valerie K. Kuehne, ‘Congruence among husband and wife caregivers’, Journal of Aging Studies, 12.3 (1998), pp. 239–254 (Chappell and Kuehne 1998); on the model of spousal caregiving as structuring later adult-child perception of duties, see: Liliana E. Pezzini, Robert A. Pollak and Barbara S. Schone, ‘Long-term care of the disabled elderly: do children increase caregiving by spouses?’, Review of Economics of the Household, 7.3 (2009), pp. 323–339 (Pezzini et al. 2009).

  27. 27.

    Betty Baker Spohr with Jean Valens Bullard, Catch a Falling Star. Living with Alzheimer’s (Seattle: Storm Peak Press, 1995) (Spohr 1995); references incorporated in the text.

  28. 28.

    On Kafkaesque metaphors in relation to the patient’s recovery after stroke, see: Martina Zimmermann, ‘Narrating stroke: the life-writing and fiction of brain damage’, Medical Humanities, 38 (2012), pp. 73–77, p. 74 (Zimmermann 2012).

  29. 29.

    Allan Pease and Barbara Pease, The Definitive Book of Body Language (London: Orion, 2005), pp. 55–56 (Pease and Pease 2005).

  30. 30.

    Rita Charon, Narrative Medicine. Honoring the Stories of Illness (New York: Oxford University Press, 2006) (Charon 2006); Kathryn Montgomery Hunter, Doctors’ Stories. The Narrative Structure of Medical Knowledge (Princeton: Princeton University Press, 1991) (Hunter 1991).

  31. 31.

    Nancy L. Mace and Peter V. Rabins, The 36-Hour Day. A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss, 5th edition (Baltimore: The Johns Hopkins University Press, 2011) (Mace and Rabins 2011), first published in 1981 and then continuously re-edited; pictured by Spohr (210), who, thus, likely used this manual. Equally, Konek as well as the spousal caregiver Ann Davidson, in Alzheimer’s. A Love Story. One Year in My Husband’s Journey (Secaucus: Carol Publishing Group, 1997) (Davidson 1997), refer to it as the only manual, which further illustrates the need for shared reports. Spohr’s conceptualisation of her ailing husband as being a ‘different’ personality, in turn, is likely influenced by the period’s literature, namely, Donna Cohen and Carl Eisdorfer, The Loss of Self: A Family Resource for the Care of Alzheimer’s Disease and Related Disorders [1986] (New York: W. W. Norton, 2002) (Cohen and Eisdorfer 2002).

  32. 32.

    Arthur Kleinman, The Illness Narratives. Suffering, Healing, and the Human Condition (New York: Basic Books, 1988), p. 49 (Kleinman 1988); George Lakoff and Mark Johnson, Metaphors We Live by (Chicago: The University of Chicago Press, 2003), pp. 3–6 (Lakoff and Johnson 2003).

  33. 33.

    Liora Navon and Nurit Weinblatt, ‘“The show must go on”: behind the scenes of elderly spousal caregiving’, Journal of Aging Studies, 10.4 (1996), pp. 329–342 (Navon and Weinblatt 1996).

  34. 34.

    Charlotte L. Clarke et al., Risk Assessment and Management for Living Well with Dementia (London: Jessica Kingsley Publishers, 2011), p. 24 (Clarke et al. 2011).

  35. 35.

    Judith Fox, I Still Do. Loving and Living with Alzheimer’s (New York: Power House Books, 2009) (Fox 2009); references incorporated in the text; most of the photographs referred to in the following can be seen in a clip uploaded by Fox; see: ‘I Still Do by Judith Fox’, https://www.youtube.com/watch?v=pWLhLD7Ox_g (accessed August 2016).

  36. 36.

    Marya Schechtman, ‘Getting our stories straight. Self-narrative and personal identity’, in Personal Identity and Fractured Selves, ed. by Debra J. H. Mathews, Hilary Bok and Peter V. Rabins (Baltimore: The Johns Hopkins University Press, 2009), pp. 65–92, p. 71 (Schechtman 2009).

  37. 37.

    Edward Helmes et al., ‘Patterns of deterioration in senile dementia of the Alzheimer type’, Archives of Neurology, 52.3 (1995), pp. 306–310 (Helmes et al. 1995).

  38. 38.

    Susan Sontag, Regarding the Pain of Others (London: Penguin, 2004), pp. 36–52, 68 (Sontag 2004).

  39. 39.

    Elaine Scarry, The Body in Pain. The Making and Unmaking of the World (New York: Oxford University Press, 1985) (Scarry 1985).

  40. 40.

    Rachel Hadas, Strange Relation. A Memoir of Marriage, Dementia, and Poetry (Philadelphia: Paul Dry Books, 2011) (Hadas 2011); references incorporated in the text.

  41. 41.

    Edwards and Hadas were sixty-one and fifty-six, respectively, at the time of diagnosis. Research is not clear on the difference in impact between early- and late-onset dementia, but particularly recognises high degrees of psychological suffering and specific problems related to the spouse’s midlife; see, for example, Deliane van Vliet et al., ‘Impact of early onset dementia on caregivers: a review’, International Journal of Geriatric Psychiatry, 25.11 (2010), pp. 1091–1100 (van Vliet et al. 2010); Julie C. Lima et al., ‘Spousal caregiving in late midlife versus older ages: implications of work and family obligations’, The Journals of Gerontology. Series B. Psychological Sciences and Social Sciences, 63.4 (2008), pp. S229–S238 (Lima et al. 2008).

  42. 42.

    Hadas’s strong emphasis on the title-suggested estrangement from her husband resonates with Janelle S. Taylor’s deliberations on becoming ‘stranger’ in the relationship with her mother; the anthropologist’s sharp insight that ‘any medical institutionalization arguably entails a form of “social death”’ further explains Hadas’s perception of the tragedy in her situation; see: Janelle S. Taylor, ‘On recognition, caring, and dementia’, Medical Anthropology Quarterly, 22.4 (2008), pp. 313–335, p. 320 (Taylor 2008); I am thankful to Jane Thrailkill for pointing me to this article.

  43. 43.

    Rachel Hadas, ‘Nothing’s mortal enemy’, The Lancet, 379 (2012), pp. 2142–2143, p. 2142 (Hadas 2012).

  44. 44.

    Consider, for example, Alastair Burns, ‘The burden of Alzheimer’s disease’, International Journal of Neuropsychopharmacology, 3 (2000), pp. S31–S38 (Burns 2000), and Carl-Otto Jonsson et al., ‘Exploratory behavior in patients suffering from senile dementia: a comparison with children’, Acta Psychiatrica Scandinavica, 53.4 (1976), pp. 302–320 (Jonsson et al. 1976). For an overview of scientific insights that have been collected regarding these issues, see: David Shenk, The Forgetting. Alzheimer’s: Portrait of an Epidemic (New York: Anchor Books, 2003), pp. 121–130 (Shenk 2003).

  45. 45.

    Toni Calasanti and Mary E. Bowen, ‘Spousal caregiving and crossing gender boundaries: maintaining gendered identities’, Journal of Aging Studies, 20 (2006), pp. 253–263 (Calasanti and Bowen 2006).

  46. 46.

    Robert E. Yahnke and Richard M. Eastman, Literature and Gerontology. A Research Guide (Westport: Greenwood Press, 1995), p. 35 (Yahnke and Eastman 1995).

  47. 47.

    Lisa Snyder, Speaking Our Minds. What It’s Like to Have Alzheimer’s [1999] (Baltimore: Health Professions Press, 2009) (Snyder 2009).

  48. 48.

    Reeve Lindbergh, No More Words. A Journal of My Mother, Anne Morrow Lindbergh [2001] (New York: Touchstone, 2002) (Lindbergh 2002); references incorporated in the text.

  49. 49.

    Even though the pilot’s condition appears to originate from a stroke, I choose to consider Reeve Lindbergh’s narrative here, because Anne Morrow Lindbergh’s dementia is presented as age-related cognitive decline, with the publisher advertising the narrative’s relevance to those ‘who care for an elderly parent disabled by Alzheimer’s or stroke’ on the book’s back cover.

  50. 50.

    Lindbergh’s praise for Hadas’s narrative; see: Hadas, Strange Relation, p. i (Hadas 2011).

  51. 51.

    Tracy Tan and Margaret A. Schneider, ‘Humor as a coping strategy for adult-child caregivers of individuals with Alzheimer’s disease’, Geriatric Nursing, 30 (2009), pp. 397–408 (Tan and Schneider 2009).

  52. 52.

    Martina Zimmermann, ‘Deliver us from evil: carer burden in Alzheimer’s disease’, Medical Humanities, 36 (2010), pp. 101–107 (Zimmermann 2010), and therein: Susan S. Lanser, ‘Queering narratology’, in Ambiguous Discourse: Feminist Narratology and British Women Writers, ed. by Kathy Mezei (Chapel Hill: The University of North Carolina Press, 1996), pp. 250–261 (Lanser 1996).

  53. 53.

    Oscar Ribeiro, Constança Paúl and Conceição Nogueira, ‘Real men, real husbands: caregiving and masculinities in later life’, Journal of Aging Studies, 21 (2007), pp. 302–313 (Ribeiro et al. 2007); Jeanne Hayes, Craig Boylstein and Mary K. Zimmerman, ‘Living and loving with dementia: negotiating spousal and caregiver identity through narrative’, Journal of Aging Studies, 23 (2009), pp. 48–59 (Hayes et al. 2009); Ad J. J. M. Vingerhoets and Guus L. van Heck, ‘Gender, coping and psychosomatic symptoms’, Psychological Medicine, 20.1 (1990), pp. 125–135 (Vingerhoets and van Heck 1990); see also Couser’s observation on the demographics of the writers and written-about, in ‘Memoir and (lack of) memory’, pp. 3–4 (Couser 2009).

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Zimmermann, M. (2017). Of Wives and Daughters: Stereotypes of the Caring Female?. In: The Poetics and Politics of Alzheimer’s Disease Life-Writing. Palgrave Studies in Literature, Science and Medicine. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-44388-1_2

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