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Dementia

Forgetting and the memory of forgetting : The material and symbolic role of memory in the intersubjective lives of people with AIDS dementia
Angela Kelly Dementia 2008 7: 451 DOI: 10.1177/1471301208096629 The online version of this article can be found at: http://dem.sagepub.com/content/7/4/451

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a rt i c l e

Forgetting and the memory of forgetting

The material and symbolic role of memory in the intersubjective lives of people with AIDS dementia
A N G E L A K E L LY University of New South Wales,Australia

de men tia
dementia
http://dem.sagepub.com vol 7(4) 451460

Abstract In death-driven narratives of AIDS, phenomenological losses experienced as a result of changes to memory with AIDS dementia remain uncharted. Traditionally in the eld of dementia, memory has been viewed as a neurological skill to be measured and charted, categorized into short-term or long-term memory loss. In this article, a relationship-based approach to memory is taken where memory is understood to play an important material and symbolic role in the lives of people with AIDS dementia and their relationships with signicant others. Through ethnographic description, this article details how for two informants Diane and Andrew forgetting and the memory of forgetting was central to how they made sense of who they were in relationship to others and others in relationship to them. For them, memory was more than an individual cerebral activity. Memory, and loss of memory, was instrumental to intersubjective life and formed part of a social space of living loss, characterized by liminality. Keywords autoethnography; dementia; HIV; loss; memory loss; relationship-based approach

Grief and loss have been central elements in sociocultural and popular accounts of the social relations surrounding HIV and AIDS. The literature of loss and grief primarily narrates these experiences in relationship to death and dying. However, in the accounts of AIDS dementia, there is a double narrative of loss. One of cognitive, behavioural and motor decline, and that of death. Both are experienced by the diagnosed person. Because death narratives have dominated AIDS accounts, there has been a lack of focus and a blurring of the other new losses, especially those associated with the deterioration of neurological function and their effects on social relations. This matters because AIDS dementia is not simply an experience of biological death.
2008 SAGE Publications (Los Angeles, London, New Delhi and Singapore) DOI: 10.1177/1471301208096629

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dementia 7(4) Informants in my research lived with far-reaching losses and their impacts on both their subjective and intersubjective lives long before death from AIDS dementia including loss of memory, youth, and hope (Kelly, 2006, 2007). I am constructing a narrative of living loss (Kelly 2006) that hinges on both social diminution and on expansion.1 As intimate circles of care (ICC) experienced it, loss was a major constitutive element of liminality but remained only one aspect of it. Within this social space of loss, one loss that remained particularly painful was that of memory, but it was not loss of memory as a neurological skill. Historically, memory has been understood to be an individual faculty (Connerton, 1989); a cerebral activity undertaken by any one person. Increasingly, academics and researchers have been coming to understand memory in more complex and multifactorial ways. These include: distinctions between collective and social memory and the relations between these and individual memory (Eves, 1996); the liberating potential of forgetting where it is longed for certain memories to be socially forgotten through the act of collective amnesia (Lattas, 1996b); and the political economy of memory (Melion & Kuchler, 1991, p. 30), where certain memories are created and perpetuated in contexts of hegemonic power. According to Terdiman (1993), there are two primary anthropological perspectives on memory. Memory is often conceived of as a faculty constituting our consciousness and our self-awareness as the means by which the coherence of our identity and our history is constructed and sustained (1993, p. vii), and second, more socially, memory as a problem, as a site of cultural disquiet (p. vii). The quest to understand memory is not solely the interest of anthropology.2 However, within anthropology, there is a growing eld of ethnographic writings on memory and while it is beyond the scope of this article to explore the complex anthropological theory on memory in detail, I draw on it to guide and inform my analysis.3 In the neurological literature, memory is a capacity that can be quantied and measured. From an anthropological perspective, however, although a skill affected by AIDS dementia and other dementias, memory is more than a narrowly dened capacity in which any decit is interpreted as a symptom. In the neurological literature, forgetting is treated as a symptom of the disease and therefore forecloses the possibility of forgetting as a willed transformation of memory (original italics) where persons actually approach forgetting as a desirable social goal (Battaglia, 1992, p. 14). For the informants in this research, memory was more than a neurological skill to be charted and categorized into short-term or long-term memory loss. Halbwachs (1992) explores the social context in which memory is lived. In doing so, this goes beyond ways of understanding and talking about memory as an individual activity and experience to explore and render 452

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k e l ly: f o rg e t t i n g a n d t h e m e m o ry o f f o rg e t t i n g meaningful the intersubjective nature of memory. In addition, he speaks of the techniques and methods societies draw upon in order to produce memories. Recently, Clare and Shakespeare (2004) have explored how marital relationships negotiated the impact of forgetting through a constructed conversation on their current situation. In their research, all people with dementia, and their partners, positioned themselves in relation to their memory loss. Although varying impacts were identied, forgetting remained a central issue for all of the 10 married couples. For those with dementia, the construction of forgetting was complex and varied, and ranged from a problem, a deviation from what would be expected, managing the situation by nding ways around forgetting, and the impact forgetting could have in relation to the future. Partners voiced memory and the issue of forgetting as something that belonged to the person with dementia, refusing to see or at least voice concerns of forgetting to identify and dene the whole situation as the memory loss problem. Drawing on the ideas of Halbwachs (1992) and others (Clare & Shakespeare, 2004; Eves, 1996; Lattas, 1996a, 1996b), I now turn to two of my informants experiences of memory, in particular their concerns and fears regarding the loss of memory. Rather than discuss the meaning of forgetting or memory loss in the way Clare and Shakepeare (2004) do a neurological skill decit that is experienced socially in this article I explore what memory loss actually means from the perspective of the person with AIDS dementia for their intersubjective social life. Dementia is a condition that, while affecting the mind of an individual, is lived out in social relationships. It is becoming increasingly understood that dementia is a concern for relationships and not just individuals. These relationship-based approaches, of which this research is one, takes into account the interactions and different perspectives of those with dementia and signicant others, usually referred to as carers in the literature, and their implications (e.g., Clare & Shakespeare, 2004; Hellstrm, Nolan, & Lundh, 2005; Henderson & Forbat, 2002; Keady & Nolan, 2003; Lyons, Zarit, Sayer, & Whitlatch, 2002). While the work of Hellstrm et al. (2005), Clare and Shakespeare (2004) and Keady and Nolan (2003) examine dementia from a relationship-based approach, they do so only from within the marital context. In my work, I use ICC (Kelly, 2006) to take into account not only intimate relationships of the same kind (referred to as a partner), but also those relationships that were critical in the social world of my informants with dementia, that were no less intimate, but of a different order. These included the social relations the person with dementia had with other signicant others including their parent/s, child, sibling and former partner, followed by their extended others, including 453

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dementia 7(4) ministers of religion, volunteers and friends. From the outset, working in the eld of AIDS dementia required that I examine and take account of social relationships that had developed in response to an epidemic and a young, not older, persons experience of dementia. This is reected in the construction of the ICC.

Methods
This article draws from an ethnographic study on the lived experiences of AIDS dementia for ICC (Kelly, 2006) conducted between early 2001 and late 2002. There were four ICC, including my own; a total of 24 informants. As typied by the ethnographic method, methods were devised to elicit the temporal orientations of experience to include retrospective assessment and also pre-reective, real-time unfolding of social life (Throop, 2003). This included participant observation, interviews and the drawings made by the informants with AIDS dementia during eldwork. Two health services were used to recruit the ICC. They were a residential facility for those with AIDS dementia and a service for people with AIDS dementia and complex needs. Both organizations were a component of a larger umbrella service for people living with HIV/AIDS with dementia and mental illnesses. Informed consent was granted by all of the informants. Approval for this research was granted by the university, area health service and its subcommittee for research involving people with mental health issues.

Findings
Several years before I met Diane and her 16-year-old son Jack, there had been a re in their home, which began while they were sleeping. Their dog alerted them and together they escaped physically unharmed. Because she was unable to rescue many of their belongings, Diane now lives with the loss of memories that, with dementia, she was only been able to recall with the support of objects. Most signicant was the loss of photographs: I lost photos in the re, memories of having a baby. She drew an image of this loss (Figure 1). With the album, her memories went up in smoke. Memory is dependent upon circumstances, upon objects to carry it forward and to evoke it (Lattas, 1996a, p. 264) and for Diane it was the photograph albums that recorded the early years of her sons life, from his birth to the age of three or four she could not remember at what age the albums stopped. While most people would grieve the loss of photographs in a home re, for Diane, it meant the tool used to stimulate her memory to recall the experience of pregnancy and Jacks early life was gone. Unlike 454

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k e l ly: f o rg e t t i n g a n d t h e m e m o ry o f f o rg e t t i n g

Figure 1 Dianes image of her loss of memories

Diane, a person without dementia may be able to recall more reliably without the prompt of an object such as the photograph album, thus changing the meaning of such a loss. While all people to varying degrees require tools and objects to evoke and carry a memory forward, the fear people have of losing such tools is reliant on partial memory. The re destroyed the tool that recorded and prompted Diane to remember becoming and being a mother. However, she still knew she had a child and was aware of the role the photograph album had played in her memory. Of losing the photograph album, she said: It was huge. It was really big. It was like losing part of your brain. But Jack lost something too. Because Diane no longer had the objects she required for narrating his and their story, Jack lost the stories of his childhood, as told by his mother. To learn about his childhood, Jack relied on collective memory. Traditionally, collective memory is a shared narrative about past events, which is not necessarily experienced by all. This form of memory requires narrative mediation by others (Connerton, 1989). Although Jack had experienced his childhood, like many of us he was reliant on his mothers memory for those experiences that he was either too young to remember, or those that he had already forgotten.4 Diane lamented the many losses with which she lived. As eldwork was coming to an end, the word loss no longer resonated with her in the way it did when we rst met. The meaning of her experience changed. When I mentioned something about loss she enquired, Do you mean missing? Now Diane was missing things. Her choice of the word missing had 455

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dementia 7(4) multiple meanings. Diane no longer knew where some things were either physically or symbolically. She also missed the skills and abilities she had once had and that were no longer available to her. Of missing, she said:
I miss a lot of my memories. Its like a picture but somebody has cut out a big chunk of it, rubbed a part of it away. Just imagine that youve drawn a picture and then someone rubs a third of it out and then you have to redraw that picture again. Its like that, you have to re-trace your steps and try and assemble the rest of it together.

Diane identied that someone else had removed aspects of her memory. She had no control over which aspects of her memory the disease had taken from her. Her memories were important enough to be redrawn in order to make her life feel and look whole again, albeit differently. This type of performance of memory where Diane tried to retrace and assemble her memory is critical to an understanding of liminality, of being neither here nor there (Turner, 1977). Liminality is always provisional, as is seen here with Dianes memory. Although the disease cut a big chunk of her memory out, it had not taken all of it. In fact, Diane quantied just how much of her memory remained. Again memory, specically the loss of memory, is too frequently used as a blanketing statement wherein the remaining memory is overlooked by simplistic generalizations and incomplete understandings of memory. Dianes experience reinforces the need to continue examining memory as being more than solely a neuropsychological skill. This demedicalization of memory is particularly critical in the eld of dementia research. Memory, the capacity for recalling and sharing memories and memory loss are of intersubjective importance and are not simply the result of the absence or presence of disease. Without memory, or with compromised memory, the picture of ones life, even if redrawn, never looks the same again. As Diane said: Its always different. You lose quite a lot when youve got dementia. Memory is central to the way people construct an identity and their life story, not in isolation but in relationship with others. This includes not only the sharing of stories and of intimacy, but, as seen in the eldwork, fun and play, play itself being part of liminality (Turner, 1977). Not only do people remember the serious aspects of their lives in order to create an identity and relationship with others, but also they recall fun moments and play with memories to arouse a response in others and share humour. Playfulness was a key characteristic of Jack and Dianes relationship. For example, Jack frequently played on his mothers difculties with remembering. One such incident occurred while Diane was looking through her bag. At the same time Jack was saying to her: Youre screwed, 456

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k e l ly: f o rg e t t i n g a n d t h e m e m o ry o f f o rg e t t i n g youve been bad for the last few days, to which Diane, looking up from her bag said to him: And you dont help. To me, Diane said: Good days and bad days. This is a bad day. With Diane still rummaging through her bag, Jack replied to her reference that he did not help by declaring: Im trying to help you. You should go back to the hospital, youre stupid; youre fucked, you should go back to the hospital. Responding in silence, Diane came and sat on the sofa next to Jack, still looking through her bag. She leant over to me and told me she did not respond to everything Jack says because if she did she would explode. It was moments like those as described by her case manager Lynn where Diane was too tired to be a strong mother. Giving up on searching through her bag Diane said: I cant remember what I was looking for. Jack was quick to reply, saying: You were getting me money.JACK!, exclaimed Diane, to which he laughingly said: Oh I thought Id see if Id get away with it. Laughing, Diane nudged Jack in the ribs and said: Im not that bad yet. Again, what made this play fun were both memory loss and the memory of forgetting. Similarly, my partner Andrew (who was diagnosed with AIDS dementia at the age of 25 and died aged 28) grieved a great deal for his failing memory and for future memory loss. His greatest fear was forgetting who his mother and I were. He became anxious in anticipation of such an irrevocable loss, of not having a sense of others in relationship to himself. He also feared the loss of speech: not only the loss of neurological skill, but also the capacity to engage intersubjectively. With dementia, Andrew became an even more incessant talker than before. Being able to communicate and converse about everyday life was a strength of our relationship, but at other times it drove me crazy. During a car trip, a song by Tracey Chapman with the line Im sorry was playing on the radio. Andrew began to cry. Even the way Andrew now cried was different. He wept silent tears, not because of public silencing, but he now rarely shed tears you could see. I never knew the reason for it, but Andrews tear ducts dried as he became increasingly ill. Placing his hand over his face, he wept:
Im sorry, Im sorry. I never stop talking because Im afraid Ill forget how to talk. Sometimes I wish my tongue was cut off so I had an excuse not to speak and just dont know where to put myself sometimes.

Andrew was afraid of forgetting how to speak as a loss of skill, but also as a way of communicating with those he loved. I tried to reassure him that he would not lose the ability to recall how to speak; although I was not certain if this was so. Andrew frequently left notes apologizing for his life and or his behaviour (Figure 2). In an attempt to ease Andrews pain and difculty with memory loss, Carole and I became what Olivia, our social worker, called his living history 457

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dementia 7(4)

Figure 2 One of Andrews notes

books. But as Diane said of her own memories that were redrawn, they were never the same. However, more than this, Andrew was often frustrated by trying to speak. He was frustrated by not nding the right words to use or when Carole and I would correct him on occasions such as when he blamed someone for something they did not do. At these times, he both resented us and hated himself. He began to hope that in the absence of further memory loss, where he would forget how to talk, having his tongue removed would be as close as he could get to memory loss as a willed strategy to survive enabling him to forget things in order to live more easily. Thus, although he did not wish to lose memory, there were times when Andrew could see the benets of losing his memory, if by losing his memory he lost his memory of forgetting. Although both Diane and Andrew had impaired memories, they and their signicant others had each found ways to live with uctuating memory decits and fears of the erosion of relationships that would result from failing memory. This theme of living loss highlights the value of memory and its role in intersubjectivity whereby an individuals memories are continually being both reshaped and reconstructed by their engagement with other people (Halbwachs, 1992) rather than as a loss as traditionally spoken about; yet, both were parts of the same phenomenon.

Conclusion
Memory plays an important material and symbolic role in the lives of people with AIDS dementia and their relationships with signicant others. 458

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k e l ly: f o rg e t t i n g a n d t h e m e m o ry o f f o rg e t t i n g Diane and Andrew feared their loss of memory in multiple ways: of memories gone, of being lost, of no longer possessing memory or it having been destroyed, or at least living with the threat that memories may be lost or destroyed and that the effort needed to nd them again might not be available either now or in the future. People with dementia also experienced feelings of confusion, fear and grief, of memory being taken away, expelled, or in the process of being destroyed or ruined. In this way, the ethnographic data required that loss be seen in a wider context than that of death and not just as a privatized individual psychological experience. In death-driven narratives of HIV and AIDS, the difculty has been that nothing else is socially validated in the ways that biological death is. If we only focus on death, we do not see many of the phenomena constitutive of loss and liminality and the ways in which other losses emerge and are experienced as illustrated with the example of memory loss. The emotional talk of the informants used in this article reects just some of the complexity of this social space. Memory loss was one of eight losses in living loss. None of these aspects was separate, but instead they created a space of living loss through an abrasive connection. Memory needs to be seen as more than a neurological skill to be charted and measured as it deteriorates. Rather, as Diane and Andrews stories illustrate, memory and living with memory loss are critical elements to being in social relations with others. We cannot dismiss this aspect of memory for any person with dementia, irrespective of its aetiology or the age of diagnosis; for all humans are social beings and dementia is, if nothing else, an illness experience lived out in social relationships where there is both forgetting and the memory of forgetting.
Notes

1. In this article, I only address diminution. For a discussion of expansion and living loss see Kelly (2006). 2. Other inuential writers include Nietzsche (1968) and Deleuze (1972) who have written on memory, particularly the involuntary nature of memory. In his writing, Nietzsche also addresses the desire and need for active forgetfulness. Others in the eld of psychology have also written on memory. 3. For example, a special issue of Oceania (Lattas, 1996c) saw a collection of articles addressing memory from ethnographic eldwork in Australia and Papua New Guinea. 4. I have explored this connection between memory, AIDS dementia and photography elsewhere (Kelly & Kerner 2004).
References

Battaglia, D. (1992). The body in the gift: Memory and forgetting in Sabarl mortuary exchange. American Ethnologist, 19(1), 318. Clare, L., & Shakespeare, P. (2004). Negotiating the impact of forgetting: Dimensions of resistance in task-orientated conversations between people with early-stage

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dementia and their partners. Dementia: The International Journal of Social Research and Practice, 3(2), 211232. Connerton, P. (1989). How societies remember. Cambridge: Cambridge University Press. Deleuze, G. (1972). Capilalisme et schizophrenie [Capitalism and schizophrenia]. Paris: Editions de minuit. Eves, R. (1996). Remembrance of things passed: Memory, body and the politics of feasting in New Ireland, Papua New Guinea. Oceania, 66(44), pp. 266277. Halbwachs, M. (1992). On collective memory (L. Closer, Trans.). Chicago: University of Chicago Press. Hellstrm, I, Nolan, M., & Lundh, U. (2005). We do things together: A study of couplehood in dementia. Dementia: The International Journal of Social Research and Practice, 4(1), 722. Henderson, J., & Forbat, L. (2002). Relationship-based social policy: Personal and policy constructions of care. Critical Social Policy, 22, 665683. Keady, J., & Nolan, M. (2003). The dynamics of dementia: Working together, working separately, or working alone? In M. Nolan, U. Lundh, G. Grant, & J. Keady (Eds.), Partnerships in family care (pp.1532). Buckingham: Open University Press. Kelly, A. (2006). Changing mind, changing lives: The lived experiences of AIDS dementia. Unpublished PhD thesis, La Trobe University, Melbourne, Australia. Kelly, A. (2007). Hope is forked: Hope, loss, treatments and AIDS dementia. Qualitative Health Research, 17(7), 866872. Kelly, A., & Kerner, A. (2004). The scent of positive lives: (Re)Memorialising our loved ones. Qualitative Inquiry, 10(2), 767787. Lattas, A. (1996a). Introduction: Mnemonic regimes and strategies of subversion, Oceania, 66(4), 257265. Lattas, A. (1996b). Memory, forgetting and the New Tribes Mission in West New Britain. Oceania, 66(4), 286304. Lattas, A. (Ed.). (1996c). [Special issue]. Oceania, 66(4). Lyons, K., Zarit, S., Sayer, A., & Whitlatch, C. (2002). Caregiving as a dyadic process: Perspectives from caregiver and receiver, Journal of Gerontology: Psychological Sciences, 57B, pp.195204. Melion, W., & Kuchler, K. (1991). Introduction: Memory, cognition and image production. In K. Kuchler & W. Melion (Eds.), Images of memory: On remembering and representation (pp.146). Washington, DC: Smithsonian Institute Press. Nietzsche, F. (1968). Twilights of the idols and the antichrist (R. Hollingdale, Trans.). Harmondsworth: Penguin. Terdiman, R. (1993). Present past: Modernity, and the memory crisis. Ithaca, NY: Conwell University Press. Throop, J. (2003). Articulating experience, Anthropological Theory, 3(2), 219241. Turner, V. (1977). Variations on a theme of liminality. In S. Moore & B. Myerhoff (Eds.), Secular ritual (pp. 3652). Amsterdam: Van Gorcum.
Biographical notes
A N G E L A K E L LY, PhD, works

in the International Program for the National Centre in HIV Social Research, University of New South Wales. Address: National Centre in HIV Social Research, University of New South Wales, Level 2 Webster Building, University of New South Wales, Sydney, NSW 2052, Australia. [email: angelamarykelly@yahoo.com.au]

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