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The Poetics and Politics of Alzheimer’s Disease Life-Writing pp 49–73Cite as

Palgrave Macmillan

From a ‘Care-Free’ Distance: Sons Talking About Cultural Concepts

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

Abstract

The usually less actively involved male family member has what I call a ‘care-free’ perspective. In analysing narratives by sons, this chapter seeks to detach the influence on illness and patient presentation of the immediate caregiving experience and burden. Less interested in identifying what it means to be the son or husband of a patient as such, this chapter specifically illustrates the enormous psychological and emotional cost of caring for a parent who is no longer a parent. In this way, it illuminates the impact of cultural and socio-educational upbringing (rather than daily caregiving) on the perception of patient identity and the condition itself. It argues that identity-affirming patient presentation is strongly gendered and closely related to societal attitudes to aging.

Keywords

  • Aging
  • Continued personhood
  • Educational background
  • Intellectual abilities
  • Pre-illness identity

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Notes

  1. 1.

    Michael Holroyd, Basil Street Blues. A Family Story [1999] and Mosaic [2004] (London: Vintage, 2010), p. 144 (Holroyd 2010).

  2. 2.

    Ignatieff, Scar Tissue, p. 53 (Ignatieff 1994).

  3. 3.

    Woodward, ‘Reminiscence and the life review’ (Woodward 1986).

  4. 4.

    Yasushi Inoue, Chronicle of My Mother [1975; trans. 1982] (New York: Kodansha America, 1985) (Inoue 1985); Marion Roach, ‘Another name for madness’, New York Times Magazine, 16 January 1983 (Roach 1983).

  5. 5.

    O’Rourke, ‘Alzheimer’s disease as a metaphor’ (O’Rourke 1996).

  6. 6.

    Mintz, Unruly Bodies, p. 183 (Mintz 2007).

  7. 7.

    Frank Wall, Where Did Mary Go? A Loving Husband’s Struggle with Alzheimer’s (Amherst: Prometheus Books, 1996), p. 142 (Wall 1996).

  8. 8.

    Shirley Neuman, ‘Autobiography and questions of gender: an introduction’, Prose Studies, 14.2 (1991), pp. 1–11, p. 2 (Neuman 1991).

  9. 9.

    Drew Leder, The Absent Body (Chicago: The University of Chicago Press, 1990), p. 154 (Leder 1990); see also: Michelle Fine and Adrienne Asch, ‘Introduction: beyond pedestals’, in Women with Disabilities: Essays in Psychology, Culture, and Politics, ed. by Michelle Fine and Adrienne Asch (Philadelphia: Temple University Press, 1988), pp. 1–37, pp. 3–4 (Fine and Asch 1988).

  10. 10.

    An earlier version of this chapter has been presented at a workshop on ‘Medical Humanities and Aging’, King’s College London, 10 December 2014.

  11. 11.

    For example, Bayley’s trilogy and Eyre’s film set the end point in the ‘Illness narrative as life writing’ seminar series at King’s College London in 2010/2011; they also featured in my own graduate seminar series; see: Burkhardt et al., ‘Literature and science’ (Burkhardt et al. 2012).

  12. 12.

    Amelia DeFalco, Uncanny Subjects. Aging in Contemporary Narrative (Columbus: The Ohio State University Press, 2010), p. 70 (DeFalco 2010).

  13. 13.

    See, for example, Robert E. Yahnke, ‘Old age and loss in feature-length films’, The Gerontologist, 43 (2003), pp. 426–428 (Yahnke 2003), and Kurt Segers, ‘Degenerative dementias and their medical care in the movies’, Alzheimer Disease and Associated Disorders, 21 (2007), pp. 55–59 (Segers 2007).

  14. 14.

    Eakin, How Our Lives Become Stories, p. 46 (Eakin 1999); Diedrich, Treatments, pp. 118, 142 (Diedrich 2007).

  15. 15.

    Tilman Jens, Demenz. Abschied von meinem Vater [Dementia. Farewell to my father] (Gütersloh: Gütersloher Verlagshaus, 2009), p. 42 (T. Jens 2009); further references incorporated in the text.

  16. 16.

    Claudia Mills, ‘Friendship, fiction, and memoir: trust and betrayal in writing from one’s own life’, in The Ethics of Life Writing, ed. by Paul John Eakin (Ithaca: Cornell University Press, 2004), pp. 101–120, pp. 114, 111 (Mills 2004).

  17. 17.

    Gertrude Himmelfarb, ‘A man’s own household his enemies’, Commentary Magazine, 108 (1999), pp. 34–38, p. 35 (Himmelfarb 1999), and Richard Freadman, ‘Decent and indecent: writing my father’s life’, in The Ethics of Life Writing, ed. by Eakin, pp. 121–146 (Freadman 2004); Roger Lewis, ‘Oversexed, overpaid and underworked’, The Times, 14 November 2015 (Lewis 2015).

  18. 18.

    A. N. Wilson, Iris Murdoch as I Knew Her [2003] (London: Arrow Books, 2004), pp. 9, 257 (Wilson 2004).

  19. 19.

    Galen Strawson, ‘Telling tales’, The Guardian, 6 September 2003 (Strawson 2003); for a rounded summary of contemporary critical reception, see: Anne Rowe, ‘Critical reception in England of Iris: A Memoir of Iris Murdoch by John Bayley’, Iris Murdoch Newsletter, 13 (1999), pp. 9–10 (Rowe 1999).

  20. 20.

    Frank, Storyteller, p. 61 (Frank 1995).

  21. 21.

    Diedrich, Treatments, p. 140 (Diedrich 2007).

  22. 22.

    Zimmermann, ‘Journeys’, p. 387 (Zimmermann 2013b).

  23. 23.

    James A. Smith et al., ‘“I’ve been independent for so damn long!”: independence, masculinity and aging in a help seeking context’, Journal of Aging Studies, 21 (2007), pp. 325–335 (Smith et al. 2007).

  24. 24.

    Fine and Asch, ‘Introduction: beyond pedestals’ (Fine and Asch 1988).

  25. 25.

    Gert Ueding, ‘Tilman Jens begräbt den lebendigen Vater’ [Tilman Jens buries the living father], Die Welt, 18 February 2009 (Ueding 2009).

  26. 26.

    Inge Jens, Unvollständige Erinnerungen [Incomplete memories] (Reinbeck bei Hamburg: Rowohlt, 2009), pp. 287, 283 (I. Jens 2009).

  27. 27.

    Tilman Jens, Vatermord. Wider einen Generalverdacht [Patricide. Against a general suspicion] (Gütersloh: Gütersloher Verlagshaus, 2010) (Jens 2010); the small number of German caregiver texts could support Jens’s claim, but numbers are not higher in other non-English speaking European countries. The only truly German taboo I see is, given the dramatic historical context, the question of assisted suicide.

  28. 28.

    Sylvia Zacharias, Diagnose Alzheimer: Helmut Zacharias. Ein Bericht [Diagnosis Alzheimer’s: Helmut Zacharias. A report] (Cologne: Hirnliga e. V., 2000) (Zacharias 2000); ‘Hirnliga e. V. – Deutschlands Alzheimer Forscher’, http://www.hirnliga.de/index.html (accessed August 2016).

  29. 29.

    Kory Floyd and Mark T. Morman, ‘Human affection exchange: affectionate communication in father–son relationships’, The Journal of Social Psychology, 143.5 (2003), pp. 599–612 (Floyd and Morman 2003); Karen L. Fingerman et al., ‘Ambivalent relationship qualities between adults and their parents: implications for both parties’ well-being’, The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 63.6 (2008), pp. P362–P371 (Fingerman et al. 2008).

  30. 30.

    Iris Radisch, ‘Der Mann seines Lebens. Tilman Jens verklärt und denunziert seinen an Demenz erkrankten wehrlosen Vater Walter Jens’ [The Man of his life. Tilman Jens distorts and denounces his demented defenceless father Walter Jens], Die Zeit, 19 February 2009 (Radisch 2009).

  31. 31.

    Jean Grothé, Alzheimer. Un journal photographique [Alzheimer’s. A photographic diary] (Montreal: Les 400 coups, 2007) (Grothé 2007); references incorporated in the text.

  32. 32.

    Zimmermann, ‘Integrating medical humanities’, p. 3 (Zimmermann 2013a).

  33. 33.

    Ed Kashi’s photographs reveal a similar ambiguity that embraces both the possibilities and limitations linked to aging, with their ambivalence being carried by their serving different societal or political connotations of aging; see: Carol Squiers, ‘Ed Kashi. Aging in America’, in The Body at Risk. Photography of Disorder, Illness, and Healing (Berkeley: University of California Press, 2005), pp. 192–209 (Squiers 2005).

  34. 34.

    Josephine Dolan, Suzy Gordon and Estella Tincknell, ‘The post-feminist biopic: re-telling the past in Iris, The Hours and Sylvia’, in Adaptation in Contemporary Culture. Textual Infidelities, ed. by Rachel Carroll (London: Continuum, 2009), pp. 174–185, p. 178 (emphasis original) (Dolan et al. 2009).

  35. 35.

    Pia C. Kontos, ‘Embodied selfhood in Alzheimer’s disease. Rethinking person-centred care’, Dementia, 4 (2005), pp. 553–570 (Kontos 2005).

  36. 36.

    David M. R. Orr and Yugin Teo, ‘Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change?’, Medical Humanities, 41 (2015), pp. 81–85 (Orr and Teo 2015).

  37. 37.

    Sabat, The Experience of Alzheimer’s Disease, p. 18 (Sabat 2001).

  38. 38.

    Hughes, Louw and Sabat, ‘Seeing whole’, p. 4 (Hughes et al. 2006).

  39. 39.

    Phillip Toledano, Days with My Father (San Francisco: Chronicle Books, 2010) (Toledano 2010); some of the photographs referred to in the following can be seen on Phillip Toledano’s webpage: ‘Mr Toledano. Days with My Father’, http://www.mrtoledano.com/days-with-my-father/01-Days-with-my-father (accessed August 2016).

  40. 40.

    Charon, Narrative Medicine, p. 52 (emphasis original) (Charon 2006).

  41. 41.

    The blog had previously been available on: http://www.huffingtonpost.com/phillip-toledano/fathers-day-is-days-with_b_617398.html, and: www.dayswithmyfather.com (both accessed December 2015); in such a blog, the sequence of photographs is, of course, a necessary given, but they lack the predetermining nature seen in Grothé’s arrangement.

  42. 42.

    Anne Boland and Philippe Cappeliez, ‘Optimism and neuroticism as predictors of coping and adaptation in older women’, Personality and Individual Differences, 22.6 (1997), pp. 909–919 (Boland and Cappeliez 1997); Robert Hill, Positive Aging. A Guide for Mental Health Professionals and Consumers (New York: W. W. Norton, 2005), pp. 96–118 (Hill 2005).

  43. 43.

    Arno Geiger, Der alte König in seinem Exil [The old king in his exile] (Munich: Carl Hanser, 2011) (Geiger 2011); references incorporated in the text.

  44. 44.

    Zimmermann, ‘Journeys’, p. 387 (Zimmermann 2013b).

  45. 45.

    The dialectics of old age has been explored widely; see, e.g., Gerald F. Manning, ‘Spinning the “globe of memory”: metaphor, literature, and aging’, pp. 37–55 (Manning 1991), and Warren A. S. Davidson, ‘Metaphors of health and aging: geriatrics as metaphor’, pp. 173–198 (Davidson 1991), both in Metaphors of Aging in Science and the Humanities, ed. by Gary M. Kenyon, James E. Birren and Johannes J. F. Schroots (New York: Springer Publishing Company, 1991).

  46. 46.

    Tom Kitwood, ‘The dialectics of dementia: with particular reference to Alzheimer’s disease’, Ageing and Society, 10 (1999), pp. 177–196 (Kitwood 1999).

  47. 47.

    Hawkins, Reconstructing Illness, p. 79 (Hawkins 1999).

  48. 48.

    Zimmermann, ‘Journeys’, p. 387 (Zimmermann 2013b).

  49. 49.

    Birgit Nüchterlein, ‘Zuhause ist jetzt anderswo’ [At home is now elsewhere], Nürnberger Nachrichten, 16 February 2011 (Nüchterlein 2011).

  50. 50.

    Woodward, ‘Reminiscence and the life review’, pp. 139, 140 (Woodward 1986).

  51. 51.

    Josh Appignanesi, Ex Memoria. Some Memories Fade. Others Keep Returning (Missing in Action Films Ltd., 2006) (Appignanesi 2006).

  52. 52.

    Appignanesi, Ex Memoria, DVD discussion leaflet, pp. 5, 13.

  53. 53.

    Robert Edgar-Hunt, John Marland and Steven Rawle, The Language of Film (Lausanne: Ava Publishing S. A., 2010) (Edgar-Hunt et al. 2010).

  54. 54.

    Ibid., p. 63 (Edgar-Hunt et al. 2010).

  55. 55.

    Andrea Capstick, ‘From room 21: narratives of liminality, shared space, and collective memory in dementia care’, presentation at the conference ‘A Narrative Future for Health Care’, London, 20 June 2013; Capstick and colleagues capture ‘the fragments and remains of the memories of people who have dementia’ in the framework of the Trebus project; see: ‘The Trebus Project’, http://www.trebusprojects.org/ (accessed October 2016); see also: Robyn Westmacott et al., ‘The contribution of autobiographical significance to semantic memory: evidence from Alzheimer’s disease, semantic dementia, and amnesia’, Neuropsychologia, 42.1 (2004), pp. 25–48 (Westmacott et al. 2004).

  56. 56.

    Appignanesi, Ex Memoria, DVD discussion leaflet, p. 7. Also a recent collection of photographs that strictly focus on the faces of Alzheimer’s patients leaves work to be done by the onlooker: the images are open to interpretation, confronting ‘the observer with his or her own honesty, with his or her willingness to utilitarian compromises’, as they may identify fear or ‘radical honesty that speaks from these faces and eyes’; see: Peter Granser, Alzheimer (Heidelberg: Kehrer Verlag, 2008), preface, no page numbers (Granser 2008).

  57. 57.

    www.exmemoriafilm.co.uk (accessed August 2013); the link is not accessible anymore upon redirection from: http://www.joshappignanesi.com/EX-MEMORIA (accessed August 2016).

  58. 58.

    Ramanathan, Alzheimer Discourse, p. 29 (Ramanathan 1997).

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  1. King’s College, London, London, United Kingdom

    Martina Zimmermann

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Zimmermann, M. (2017). From a ‘Care-Free’ Distance: Sons Talking About Cultural Concepts. 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_3

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