Journal of Medical Humanities

, Volume 34, Issue 3, pp 385–397 | Cite as

‘Journeys’ in the Life-Writing of Adult-Child Dementia Caregivers

  • Martina Zimmermann


This article explores how Alzheimer’s disease caregivers struggle under the impact of a parent’s memory loss on their own personality. In particular, it analyses how caregivers perceive and, thus, present their experiences of the ever intensifying caregiving activity in terms of a ‘journey’. In doing so, this work takes into account both the patient’s continuing bodily as well as cognitive decline and its intricately linked influence on the caregiver’s physical and emotional stability. Equally, this study investigates how caregivers portray memory loss, and how their portrayal fits into our conceptualisation of illness narratives and the culture of autobiographical writing.


Dementia Caregiving Life-writing Journey Biographical Disruption 



I am grateful to the Lesmüller Foundation for financial support, to J. Whitehead for his insightful comments, and to J. Klein for supporting and enabling my interdisciplinary research work. I am most thankful to S.P. Brown for his perceptive listening.


1. All subsequent references to this work appear in the text. A later edition of this memoir was published with the new title Keeper. A Book About Memory, Identity, Isolation, Wordsworth and Cake (London: Short Books, 2010)

2. All subsequent references to this work appear in the text.

3. John Bayley’s approach to enhance the reader’s understanding of the caregiving burden is similar in that he chronicles the sense of despair and isolation that pervades the business of daily care by means of diary entries that give a literal transcription of the day-to-day struggle with dementia and its vicissitudes (2003).

4. Changing the narrative’s subtitle (see footnote 1 above) fittingly considers these concerns.

5. In her autobiographical account of her mother’s vascular dementia, Linda Grant finds memorable words for how dramatic and incisive “the cruel decision [is] to take away her [ailing mother’s] freedom and put her in a home, whether she wanted to go or not, in defiance of every democratic instinct which demanded human rights, even for the old” (1998, 30). As such, writing about the parent’s decline will always be more than a coping strategy: it also becomes a platform for the identification—and justification—of priorities.

6. Similarly, Hilary Mantel explores the potential of the memoir “in order to take charge of the story of my childhood and my childlessness” (2003, 222). See Gay Becker’s Disrupted Lives for a discussion on the disruptive effect of infertility on the individual’s biography (1997).

7. An in-depth exploration of the caregiver’s perception of the patient as a ‘child’ lies beyond the scope of this article.

8. Dennis Potter’s approach to exploring the effect of childhood trauma on behaviour and perception in adult life also rests on the child’s confrontation with parental affairs (Amiel 1986).

9. This acute awareness is reminiscent of Martin Amis’s appreciation of his own mortality, when he views—under the impression of Kingsley Amis’s death—the father as “the intercessionary figure, […] the man who stands between the son and death” (2000, 7).

10. Similarly, in his fictional accounts Everyman and The Dying Animal Philip Roth explores the motif of illness as confrontation with mortality and death that leads to the protagonist’s final reckoning with what he made of his life.

11. In James Olney’s words, his memoirs become “more than a history of the past […], a monument of the self as it is becoming, a metaphor of the self at the summary moment of composition” (1972, 35).

12. See Anne Hunsaker Hawkins’s Reconstructing Illness for a detailed analysis of the journey myth in illness narrative (1999). I would go even further here, suggesting that the growth Gillies experiences while travelling is manifest in the composing and presenting of this very narrative in itself (instead of the originally planned, fictional account).

13. These different stages are manifested in the patient’s changes in behaviour and neuropsychological symptoms (Almkvist 1996).

14. The patient Richard Taylor muses on the interpretation of the caregiver and patient’s metaphorical journeys (and different destinations) to come to the conclusion “that although we believe we are on the same road, we are, in fact, confined to our own lanes. We can’t cross over the double yellow line. It’s not against the law; it’s physically and mentally impossible. We can see each other, speak with each other, and even hold each other. Yet, we each have our own pot holes, our own detours, and our own road and life hazards that we must traverse by ourselves and within ourselves” (2007, 143). To consider further patient insights lies beyond the scope of this article (Basting 2003, Zimmermann 2011).

15. See other work on spousal feelings of commitment and responsibility (Russell 2001).

16. See, for example, Hawkins’s deliberations on Philip Roth’s Patrimony.

17. All subsequent references to this work appear in the text.

18. Similar considerations have been put forward in the discussion surrounding John Bayley’s publication of Iris Murdoch’s memoirs at a time when she was still alive, though significantly afflicted by dementia (Wilson 2003).

19. See elsewhere for the contribution of fictional texts to the debate on ethical considerations relating to dementia (Zimmermann 2010).

20. See other work for considerations of the female caregiver burden in particular (Abel 1989).

21. Such critical consideration to separate past from present persona is often lacking in autobiographical texts (such as Martin Amis’s Experience), where one wonders how clearly the narrator is actually able to remember details from his/her own past.

22. Notably, he acknowledges (in his ‘written sources’) inspiration from Augustine’s Confessions, a text that is, according to Linda Anderson, generally read suppressing the mother’s role (2001).

23. See Elaine Scarry’s work for the ‘making’ power of writing (1985).

24. All subsequent references to this work appear in the text.


  1. Abel, Emily. 1989. “The ambiguities of social support: Adult daughters caring for frail elderly parents.” Journal of Aging Studies 3: 211–30.CrossRefGoogle Scholar
  2. Almkvist, Ove. 1996. “Neuropsychological features of early Alzheimer’s disease: preclinical and clinical stages.” Acta Neurologica Scandinavica Supplementum 165: 63–71.CrossRefGoogle Scholar
  3. Amiel, Jon. 1986. The Singing Detective. BBC Worldwide Ltd.Google Scholar
  4. Amis, Martin. 2000. Experience. New York: Vintage.Google Scholar
  5. Anderson, Linda. 2001. Autobiography. London: Routledge.Google Scholar
  6. Basting, Anne. 2003. “Looking back from loss: views of the self in Alzheimer’s disease.” Journal of Aging Studies 17: 87–99.CrossRefGoogle Scholar
  7. Bayley, John. 2003. The Iris Trilogy. London: Abacus.Google Scholar
  8. Becker, Gay. 1997. Disrupted Lives. How People Create Meaning in a Chaotic World. Berkeley: University of California Press.Google Scholar
  9. Brody, Howard. 2003. Stories of Sickness. New York: Oxford University Press.Google Scholar
  10. Bruner, Jerome. 2002. Making Stories. Law, Literature and Life. Cambridge: Harvard University Press.Google Scholar
  11. Burns, Alastair. 2000. “The burden of Alzheimer’s disease.” International Journal of Neuropsychopharmacology 3: 31–8.CrossRefGoogle Scholar
  12. Bury, Marina. 1982. “Chronic illness as biographical disruption.” Sociology of Health and Illness 4: 167–82.CrossRefGoogle Scholar
  13. Daniel, John. 1996. Looking After. A Sons Memoir. Washington: Counterpoint.Google Scholar
  14. Davidson, Warren. 1991. “Metaphors of health and aging: geriatrics as metaphor.” In Metaphors of Aging in Science and the Humanities, edited by Gary Kenyon, James Birren, Johannes Schroots, 173–98. New York: Springer Publishing Company.Google Scholar
  15. Eakin, Paul. 1999. How Our Lives Become Stories. Making Selves. Ithaca: Cornell University Press.Google Scholar
  16. Ehrenreich, Barbara. 2010. Smile or Die. How Positive Thinking Fooled America and the World. London: Granta Books.Google Scholar
  17. Frank, Arthur. 1995. The Wounded Storyteller. Body, Illness and Ethics. Chicago: University of Chicago Press.Google Scholar
  18. Gentleman, Amelia. 2010. “The raw horror of Alzheimer’s.” The Guardian, June 1.Google Scholar
  19. Gillies, Andrea. 2009. Keeper. Living with Nancy. A Journey into Alzheimers. London: Short Books.Google Scholar
  20. Grant, Linda. 1998. Remind Me Who I Am, Again. London: Granta Books.Google Scholar
  21. Harris, Phyllis, and Long, Susan. 1999. “Husbands and sons in the United States and Japan: Cultural expectations and caregiving experiences.” Journal of Aging Studies 13: 241–67.CrossRefGoogle Scholar
  22. Hayes, Jeanne, Boylstein, Craig, and Zimmerman, Mary. 2009. “Living and loving with dementia: Negotiating spousal and caregiver identity through narrative.” Journal of Aging Studies 23: 48–59.CrossRefGoogle Scholar
  23. Hawkins, Anne Hunsaker. 1999. Reconstructing Illness. Studies in Pathography. West Lafayette: Purdue University Press.Google Scholar
  24. Hequemboug, Amy, Brallier, Sara. 2005. “Gendered stories of parental caregiving among siblings.” Journal of Aging Studies 19: 53–71.CrossRefGoogle Scholar
  25. Herskovits, Edward. 1995. “Struggling over subjectivity: debates about the ‘self’ and Alzheimer’s disease.” Medical Anthropology Quaterly 9: 146–64.CrossRefGoogle Scholar
  26. Hinton, Ladson and Levkoff, Sue. 1999. “Constructing Alzheimer’s: narratives of lost identities, confusion and loneliness in old age.” Current Medical Psychiatry 23: 453–7.CrossRefGoogle Scholar
  27. Inoue, Yasushi. 1985. Chronicle of My Mother. New York: Kodansha America.Google Scholar
  28. Kenyon, Gary, Birren, James, and Schroots, Johannes. 1991. Metaphors of Aging in Science and the Humanities. New York: Springer Publishing Company.Google Scholar
  29. Kleinman, Arthur. 1988. The Illness Narratives. Suffering, Healing and the Human Condition. New York: Basic Books.Google Scholar
  30. Konek, Carol Wolfe. 1991. Daddyboy. A Familys Struggle with Alzheimers. Saint Paul: Graywolf Press.Google Scholar
  31. Mantel, Hilary. 2003. Giving up the Ghost. London: Fourth Estate.Google Scholar
  32. Mason, Mary. 1980. “The Other Voice: Autobiographies of Women Writers.” In Autobiography. Essays Theoretical and Critical, edited by James Olney, 207–35. Princeton: Princeton University Press.Google Scholar
  33. Mintz, Susanna. 2007. Unruly Bodies. Life Writing by Women with Disabilities. Chapel Hill: The University of North Carolina Press.Google Scholar
  34. Mills, Claudia. 2004. “Friendship, fiction, and memoir: Trust and Betrayal in writing from one’s own life.” In The Ethics of Life Writing, edited by Paul Eakin, 101–20. Ithaca: Cornell University Press.Google Scholar
  35. Olney, James. 1972. Metaphors of Self. Princeton: Princeton University Press.Google Scholar
  36. O’Rourke, Norm. 1996. “Alzheimer’s disease as a metaphor for contemporary fears of aging.” Journal of the American Geriatric Society 44: 220–1.Google Scholar
  37. Ribeiro, Oscar, Paúl, Constança, and Nogueira, Conceição. 2007. “Real men, real husbands: Caregiving and masculinity in later life.” Journal of Aging Studies 21: 302–12.CrossRefGoogle Scholar
  38. Rimmon-Kenan, Shlomith. 2002. “The Story of ‘I’: Illness and Narrative Identity.” Narrative 10: 9–27.CrossRefGoogle Scholar
  39. Roach, Marion. 1983. “Another Name for Madness.” New York Times Magazine, January 16, 22–31.Google Scholar
  40. Roth, Philip. 1991. Patrimony. New York: Simon and Schuster, 1991.Google Scholar
  41. ---. 2006. Everyman. New York: Vintage.Google Scholar
  42. ---. 2006. The Dying Animal. New York: Vintage.Google Scholar
  43. Russell, Richard. 2001. “In sickness and in health. A qualitative study of elderly men who care for wives with dementia.” Journal of Aging Studies 15: 351–67.CrossRefGoogle Scholar
  44. Sacks, Oliver. 1986. The Man Who Mistook His Wife for a Hat. London: Picador.Google Scholar
  45. Scarry, Elaine. 1985. The Body in Pain. The Making and Unmaking of the World. New York: Oxford University Press.Google Scholar
  46. Schreiner, Margit. 2005. Nackte Väter. Munich: Goldmann.Google Scholar
  47. Smith, Sidonie, and Watson, Julia. 2001. Reading Autobiography. A Guide for Interpreting Life Narratives. Minneapolis: University of Minnesota Press.Google Scholar
  48. Taylor, Richard. 2007. Alzheimers from the Inside Out. Baltimore: Health Professions Press.Google Scholar
  49. Wilhoit, Mary. 2008. As She Was Dying. Lincoln: iUniverse.Google Scholar
  50. Wiltshire, John. 2000. “Biography, Pathography, and the Recovery of Meaning.” The Cambridge Quarterly 29: 409–22.CrossRefGoogle Scholar
  51. Wilson, Andrew. 2003. Iris Murdoch as I Knew Her. London: Arrow Books.Google Scholar
  52. Woodward, Kathleen. 1987. “Reminiscence and the Life Review: Prospects and Retrospects.” In What Does It Mean to Grow Old? Reflections from the Humanities, edited by Thomas Cole and Sally Gadow, 135–61. Durham: Duke University Press.Google Scholar
  53. Zacharias, Sylvia. 2000. Diagnose Alzheimer: Helmut Zacharias. Ein Bericht. Cologne: Hirnliga e. V.Google Scholar
  54. Zimmermann, Martina. 2010. “Deliver us from evil: caregiver burden in Alzheimer’s disease.” Medical Humanities 36: 101–7.CrossRefGoogle Scholar
  55. ---. 2011. “Dementia in life-writing: our health-care system in the words of the sufferer.” Neurological Sciences 32: 1233–8.Google Scholar

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  1. 1.Department of Pharmacology, School of Pharmacy, Biocentre N260Goethe University FrankfurtFrankfurt am MainGermany

Personalised recommendations