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

Abstract

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.

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Acknowledgments

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.

Endnotes

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.

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Correspondence to Martina Zimmermann.

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Zimmermann, M. ‘Journeys’ in the Life-Writing of Adult-Child Dementia Caregivers. J Med Humanit 34, 385–397 (2013). https://doi.org/10.1007/s10912-013-9233-9

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Keywords

  • Dementia
  • Caregiving
  • Life-writing
  • Journey
  • Biographical Disruption