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

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.

Now that she can no longer be hurt by me, by her family, by those who knew her, by any of us, surely I may open her letters and use them to help tell her story? But I hear my father’s warning: ‘Please remember that one day someone may have to write your biography’.¹

I began to think of my mother as a philosophical problem.²

As one of the first pieces of literary criticism regarding dementia narrative, Kathleen Woodward in 1986 focused our attention on the impact of dementia as a debilitating condition in old age.³ Her comparative analysis concentrated on a son’s memoir, Yasushi Inoue’s Chronicle of My Mother, and a journalist daughter’s feature story published in the New York Times Magazine.⁴ In placing her analysis in the context of deliberations on the representation of old age, her work draws important attention to the fact that present-day society perceives changes in cognitive processes intricately to be linked to, even synonymous with, older age. Dementia has begun to epitomise the sum of illness, aging and dying.⁵

One of the core merits of Woodward’s insights is that it alerts the reader to the fact that the representation of dementia must be dissected in connection with a consideration of the societal repulsion of aging. In this respect, Susannah B. Mintz’s recent analysis of May Sarton’s journals strongly echoes Woodward’s views, when it reveals how ‘physical and cognitive shifts associated with aging become the unacknowledged, because feared, potential of human corporeal existence’.⁶ Additionally, in comparing a text authored by an American journalist to that of a Japanese author, Woodward’s work develops a clear understanding of how the specific meaning of memory and its loss are produced within particular historical settings and cultural beliefs. Given the scarcity of narratives available at the time of publication however, Woodward could not explore how different cultural settings, educational backgrounds and the upbringing in a specific environment shape how caregivers confront dementia in their family member. In its scope, Woodward’s work also neglects the influence on patient presentation of the parent’s life history and life-long role in the adult child’s nurturing – aspects that involve a discussion of gender and aging in relation to patient presentation. These are my concern in the present chapter.

In looking at narratives by male rather than female caregivers, I hope to factor out the impact on representation of the burden of daily care. Apart from John Bayley’s narrative, I came across only one other account written by a male spouse. Like Betty Baker Spohr, Frank Wall provides a candid guide-like account, based on the idea that ‘two Marys were created’, which further supports my hypothesis that caregiver burden per se overwrites gender-related patient conceptualisation.⁷ Of course, following Shirley Neuman, we might read Wall’s detachment as professionally male, while perceiving of Spohr’s as a deliberate injunction against ‘the personal, intimate’ of female autobiography.⁸ That said, given the compelling similarities regarding disease and patient presentation in, and the time of publication of, Wall’s and Spohr’s texts, I here reflect rather on several adult-son accounts. Their discussion, however, demands a consideration of the best known and most frequently cited of all Alzheimer’s narratives: John Bayley’s narratives about his wife, the British writer and philosopher Iris Murdoch. Especially Iris: A Memoir of Iris Murdoch continues to provide inspiration, and at times moral justification, for other caregivers, among them (as referred to in Chap. 2) Margarita Retuerto Buades, Andrea Gillies and Nucci A. Rota, as well as David Sieveking, whose film I analyse in the conclusion to this book.

My analysis will, first and foremost, look at the author-narrator’s illness and patient presentation as shaped by the life-long relationship between parent and child; this relationship influences the choice of metaphors; the importance assigned to losses as compared to gains; and the meaning ascribed to the parent’s illness as such. As previously, knowledge so gained will directly inform policy discussions, because the familial caregiver is able to see lifetime continuity and can encourage identity-affirming care that respects the patient’s past experiences and achievements.

In the first part of this chapter, I illustrate how children’s perception of the parent’s role in their upbringing influences their writing about them once they have dementia. My comparison of narratives by the German journalist Tilman Jens and the Canadian photographer Jean Grothé argues that writing about a parent whose intellectual prowess dominated the son’s life unavoidably centres on the parent’s cognitive losses. Illustrating the illness of a life-long nurturer, by comparison, may be more focused on the parent’s aging as such. This discussion necessarily reflects on the role of the parent’s gender, because, in our cultural hermeneutics, females have been associated with the nurturing body and concepts of dependence and vulnerability: they are ‘linked with nature, sexuality, and the passions, whereas men have been identified with the rational mind’.⁹ Reading these narratives against John Bayley’s account reveals that awareness of the patient’s life history and achievements overwrites a gendered rendering of the illness.

Having established the crucial role of parents’ life history for their representation, I turn to the link between Alzheimer’s and aging more fully in the second part of this chapter. I argue that positive notions of aging, including concepts of wisdom and life-experience, can structure those of dementia and influence identity affirmation. The photographs of the Italo-American Phillip Toledano and the writings of the Austrian Arno Geiger reflect the enabling powers of patient appreciation. In contradistinction to Chap. 2, my analysis explicitly focuses on the perception and presentation of the patient, not the identity crisis of the child. But it will become clear that patient affirmation feeds back into the adult child’s own wellbeing: it influences perception of continued identity as a child. My closing reflection on Josh Appignanesi’s autobiographically inspired short film Ex Memoria channels considerations on the patient’s life history and old age towards a deliberation on the patient’s own perspective particularly in an identity-denying healthcare environment. This discussion prepares the ground for a closer scrutiny of patients’ own writings in Chaps. 4 and 5.

Body and Mind: The Patient as Object

Both on a textual and a narrative level, John Bayley looks for shared continuity in the couple’s life together under the spell of Alzheimer’s disease.¹⁰ Incessantly, he reformulates motifs that were important in the couple’s past – like swimming in the river, and water in general. Their contextualisation in the present emphasises the life-changing impact of the condition, when Bayley, for example, states that their ‘communication seems like underwater’ (41). To describe the lingering in memories of his own childhood, he depicts himself as ‘[s]ailing my little boat slowly down the stream of memories’ (271). This expression, in turn, picks up on Murdoch’s own assertion of ‘sailing into the darkness’ (194). It also hints at the husband’s attempt to make their experiences mutual: their frequent loss of understanding, their silence in front of the other.

In line with this observation, the most striking symbol for attempted continuity reveals itself in the way Bayley praises ‘the joys of solitude’ in their marriage, meaning ‘[t]o be closely and physically entwined, and yet feel solitude’s friendly presence’ (94). Only a few pages later, the scholar admits:

Now we are together for the first time. We have actually become, as is often said of a happy married couple, inseparable […]. It is a way of life that is unfamiliar. The closeness of apartness has necessarily become the closeness of closeness. And we know nothing of it; we have never had any practice. (96)

These different notions of silence and solitude resonate with Hadas’s experience of lost companionship. But in comparison to the American poet, the British writer zeroes in on the raw fact that Iris is not able to choose her lifestyle; that her former independent lifestyle has turned into full dependence on Bayley and his care.

Bayley transports the momentous nature of this disease-imposed transformation on a textual and narrative level: the second, much shorter part of his account is composed of diary-like entries in the present tense. They tell about the challenges of daily care, and employ images that convey Murdoch’s dependence on Bayley. Amongst others, we read about the couple’s ‘child talk’, and gather that:

She never showed any interest in children before. Now she loves them, on television or in real life. It seems almost too appropriate. I tell her she is nearly four years old now – isn’t that wonderful? (201)

As previously mentioned, Bayley’s narrative has obtained its prominence in conjunction with Richard Eyre’s movie adaptation: both critical reception and didactic use of his memoir have been aided by the film’s outreach and message.¹¹ Yet, the film is considered ‘to transform Iris Murdoch into a mascot for dementia’.¹² This fact might have supported professional interest in the movie.¹³ But it also favoured the almost undisputed use of Bayley’s narrative to illustrate how the illness reduces the patient not only to a child but also to a living death. With reference to Paul John Eakin’s assertion that Alzheimer’s represents ‘the death of the self’, Lisa Diedrich, for example, writes that ‘[i]n the case of Bayley’s narrative of Murdoch, the first death is the death of the self through Alzheimer’s that precedes the death of the biological body’. Diedrich puts her claim specifically in the context of Murdoch’s achievements as a philosopher and novelist. As such, one could argue that in Murdoch’s case the loss of self becomes particularly apparent, because the reader reflects on her illness in the light of her past achievements, or, as Diedrich puts it: ‘Bayley’s task […] is to describe what happens […], but, in describing the losing that occurs with Alzheimer’s, he must also describe that which has been lost’.¹⁴

Confirming this general take on Bayley’s trilogy, the German journalist Tilman Jens compares, amongst others, his father’s need for close contact with Iris Murdoch’s ‘terror of being alone, of being cut off for even a few seconds from the familiar object’ (96 in Bayley).¹⁵ That Jens appropriates Bayley’s metaphors may anticipate his feeling uncomfortable with his own picturing: while the British scholar presents us with a highly crafted illness memoir, organising it by the motif of Alzheimer’s disease on the levels of story, text and narrative, Jens centrally speculates that his father’s vascular dementia conveniently covered up his unwillingness to comment on his potential membership in the national-socialist party.

Against Michael Holroyd’s ponderings on writing about his aunt, Tilman Jens’s writing must seem highly unethical: it lacks any sensitivity in the context of discussing the father’s past, which, unavoidably, contributes to the loss of the literary historian’s reputation. These considerations become even more pressing in view of the fact that, as Claudia Mills has observed, the success of memoirs ‘as a literary genre has sometimes been linked with a growing culture of narcissism’.¹⁶ Indeed, the rage speaking from Gertrude Himmelfarb’s commentary or A. N. Wilson’s memoir reflects the heated atmosphere surrounding the publication of Bayley’s texts at a time when his wife was still alive or her death still fresh (this judgement shifted for critics like Roger Lewis with the study of Murdoch’s letters published in 2015).¹⁷ Wilson, in particular, identified ‘resentments, envy, poisonously strong misogyny and outright hatred of his wife’ in Bayley’s memoirs, and claimed that Bayley had publicly admitted that ‘[he has] never set much store by the truth’.¹⁸ The philosopher Galen Strawson, by comparison, believed that ‘Bayley moves very close to truth’ and saw a distinction between ‘the whole truth’ and the ‘nothing-but-the-truth truth’.¹⁹

Strawson’s perspective resonates with what psychoanalyst Donald Spence calls, and Arthur W. Frank refers to, as an exercise of narrative truth. By this, Spence means that the narrator attempts to re-establish the connection of past to present in the present of illness that was not planned in the past. This process does not involve the reinvention of the past, but ‘the sense of what was foreground and background in past events can shift to recreate a past that displays […] greater “continuity and closure”’.²⁰ This insight, in turn, is in line with our earlier observations of Bayley’s search for continuity. Diedrich, who reads Bayley’s memoir against Murdoch’s philosophy, brings these moral considerations to the point, as she suspects that:

Murdoch would view the proliferation of memoirs in contemporary culture with weariness at best, not necessarily because it is a popular, democratic rather than a high literary form, but because it is a form that often privileges the cultivation of a unified self.²¹

Tilman Jens’s poetic choices, indeed, appear self-serving, and only add to the father’s undignified presentation. He frequently selects verbs associated with a child’s behaviour (like ‘begging for a tranquilliser tablet’ or ‘having to obey’), without explicitly owning up to such comparison. This strategy, which is as evasive as it is systematic, enhances the reader’s impression that the son forces the father into inescapable diminishment. What is more, Tilman Jens claims himself to be aware of the ethical implications associated with writing about a living family member, when confessing: ‘Ich ertappe mich immer wieder, wie ich […] meinen demenz-kranken Vater, statt ihn im Präsens leben zu lassen, ihn im Präteritum […] einsarge’ [I catch myself out again and again how I (…) bury my dementia afflicted father in the past tense (…), instead of letting him live in the present tense; 24]. However, he specifically uses the present tense when referring to the father’s confrontation with his past rather than to explore his continued activity within the illness. This strategy forces the reader to witness and judge the father personally. Reflected against Bayley’s choices, this strategy becomes even more problematic: Bayley (and Gillies after him) uses the present tense to take us into the sense of despair pertaining to the day-to-day confrontation with Alzheimer’s disease as such.²²

This passivity enforcing presentation runs strongly counter to concepts of hegemonic masculinity and independence.²³ Furthermore, as males are usually identified with their legacy, Jens’s rendering the father’s condition as mental rather than bodily further enhances the reader’s aversion.²⁴ This is particularly true, since the son’s emphasis on the father’s loss of intellectual abilities and agency deprives Walter Jens of his former social identity as a mind-defined philologist; it literally reduces him to a ‘living dead’.²⁵ In this respect, the reception of Jens’s narrative was very similar to Bayley’s. But Bayley’s writing is permeated by allusions to the shared history of matrimony. In fact, the gravity of Tilman Jens’s presentational choices becomes even clearer when reading about Inge Jens’s memories of the couple’s ‘ideal of a partnership’. In her autobiography, Walter Jens’s wife particularly emphasises the need to be able to resort to a ‘durch die Krankheit nicht zerstörbare Vergangenheit’ [past indestructible by the illness] with her husband.²⁶

In a second book, Jens claims that his intentions had been to write against the taboo of dementia.²⁷ He specifically compares himself to the medical journalist Sylvia Zacharias. Zacharias had reported on her famous father’s memory loss in a book, whose publication was championed by the Hirnliga [Brain alliance], an organisation supporting Alzheimer’s disease research.²⁸ But in doing so, Jens overlooks that Zacharias had written her report ten years earlier, when the societal awareness regarding Alzheimer’s disease was much smaller than at his time of writing: compared to the 1990s, the number of mentions of ‘Alzheimer’ in the two largest German broadsheet newspapers, Süddeutsche Zeitung and Frankfurter Allgemeine Zeitung, tripled between 2000 and 2009. Moreover, the reader’s preconception of males as preferring to act in a planned and rational manner will not facilitate Tilman Jens’s efforts to encourage a more lenient judgement, especially, since a father–son relationship is often viewed as competitive.²⁹ In fact, it may be the sum of these impressions that led to Tilman Jens’s work being set in the context of an alleged Oedipal relationship with his mother, not least since his dedication reads ‘Für Mami’ [for mommy].³⁰ Thinking in psychoanalytical terms, Tilman Jens’s damaging narrative tactics could also be read as his inability to deal with the loss of the father as a powerful and allied figure. In any event, such controversial debate further removed both text and reader from the ostensibly intended discussion of dementia that already seemed a pretext rather than the purpose of Jens’s writing.

Against these considerations, we would expect a son’s account of his mother’s Alzheimer’s disease to be differently accentuated. The Canadian Jean Grothé chronicles his mother’s illness in fourteen photographs and related short notes, literally presenting portraits of her, as she is passively seated in nine of these images.³¹ Laying down the contrast between their former contentment and the life under the spell of Alzheimer’s disease, the journal opens with a scene witnessing the life-long affectionate mother–son relationship: the mother wears an elegant dress, and, seated at the laid table of a restaurant opposite the photographer and son, directly focuses on Grothé; her charming smile signals full awareness of him and her being photographed (13).

I began a seminar on dementia pharmaceutical care using this photograph; the overwhelming student response described this take as depicting ‘an elderly lady having lunch’. When I later showed a sequence of further photographs (17, 31, 33, 37), seminar attendants interpreted the less and less elegant dress and fashionable hairstyle, and the reduced eye contact as well as growing distance to the photographer as the photographer’s way of documenting the lady’s aging process; a process of decline and loss.³²

The choice and reception of this portrayal bring home that Grothé equates dementia with aging and considers it a condition of loss and decline. Moreover, Grothé exposes his mother’s frailty without any reservation. He reveals the precariousness of her condition in an again blurred photograph taken from an angle, which shows her as if on a sinking ship (25); depicts her on a hospital stretcher, following an ischemic attack that accelerates her decline (26); and shows her, dressed in a nightgown, in a dishevelled state (33). But even though the text completes this image of inescapable dissolution, Grothé’s photographs provoke an ambiguous reading: he observes the mother’s glum decline, but equally senses the hope in her continued identity within the illness.³³ Grothé achieves this effect by visually dissociating the illness from the person, as he continues to focus on the mother’s gaze, while letting the surrounding objects and her shrinking body sharply determine her departure. Especially in the series of photographs I used for teaching, Grothé shows his mother on the impersonal settee (17), and later a chair of the nursing home (31), and, finally, two types of wheelchairs (33, 37).

The most telling photo is taken in a big white exhibition hall, in whose centre the small figure of the mother appears as a misplaced object without relation to the surroundings, let alone the photographer (21). The distance between patient and photographer visualises the pair’s mutual helplessness, especially as they are both exposed to the oppressive emptiness of the hall; the isolating consequences of the condition. The accompanying text reveals the core of this pain that explains Grothé’s experience of loss in psychological terms: ‘elle en vienne à fabuler, me prenant pour son mari. […] Nous sommes revenus tous deux épuisés, peinés, troublés’ [she begins to make up stories, taking me for her husband (…) we came back both of us exhausted, pained, disturbed; 20]. Aware that his mother is about to forget him, Grothé clings to the mother as perceiving of him as her son, continuing his documentation with a close-up portrait in which his mother clearly and lovingly focuses on him (23).

But considered from this perspective, this photographic series turns into a study on the eye contact a mother maintains with her son as a metaphor for a dementia patient’s mental acuity. Consequently, we as onlookers – like the son and photographer – must wonder, and that more and more with every photograph, whether Mme Grothé continues to be cognitively aware; whether she continues to recognise her son, or whether her smile occurs in the reflex of having been a life-long age-old and now old age object of the son’s camera. Grothé himself obviously ponders this question: he shows his mother as laughingly covering up her face, playfully peering through the slits formed by her fingers (19), while perceiving of her as ‘jamais […] si gamine auparavant’ [never before (having been) so childlike; 18].

Grothé uses here a term that evokes notions of aging as a process of regression into a second childhood, with this understanding coming close to Tilman Jens’s view of his father, and both explainable in psychoanalytical terms. But he links this expression to a photograph that takes in Mme Grothé’s continued identity. In this way, Grothé signals, unlike Jens, that he keeps seeing his parent in the individual of changed behaviour and bodily appearance. In addition, the temporal immediacy conveyed in Grothé’s photographs is less exposing than Jens’s use of the present tense, because Grothé remains focused on the mother’s presence as such, rather than the father’s acts in the past. Indeed, Jens hardly lingers on the father’s condition as one of aging, or decline in aging. Much rather, he emphasises the father’s loss of agency.

That said, also Grothé’s photographs transport concepts of mental confusion and passivity, and they picture dementia as a condition intricately linked to bodily decline. Having shown concern about how the film adaptation of Bayley’s memoir presents embodiment, some critics might take issue with Grothé’s work, because it reduces his mother to the body. Specifically in relation to Richard Eyre’s Iris, Josephine Dolan and colleagues have asserted that:

‘Iris’ increasingly becomes her body as the Alzheimer’s takes hold, no longer cerebral but physical. Murdoch’s status as a highly intellectual writer is eroded by the image of her as an abject female body – and by the pathologization of that body as a site of mental and moral decline. The figure of the active, independent and fiercely intellectual younger woman is systematically replaced by that of the passive and dependent older one.³⁴

That said, critics like Pia C. Kontos have viewed such a perspective on embodiment more positively, because it can further the viewer’s empathy.³⁵ This interpretation perhaps furnishes an explanation for the engagement by students when I used Grothé’s photographs in my teaching.

On the other hand, David Orr and Yugin Teo have, in negotiation with the work by Kontos and Dolan and colleagues, criticised the movie for foregrounding John Bayley’s attempts to maintain Murdoch’s selfhood as a writer.³⁶ Bayley’s tendency to privilege the intellectual aspects of his wife’s identity (despite perceiving of her as childlike) counters Jens’s intellect-denying approach. Tilman Jens denies his father what I would like to term an extra-intellectual or, as Jens Brockmeier would say, pre-narrative identity. Grothé’s photographs, by comparison, offer in their imagery per se such a pre-narrative identity, which, at its core, tells about the nurturing mother–son relationship. Concurrently, however, the presentation of portrait-like photographs neglects the fact that ‘the displays of [the patient’s] personality and character […] require, for their very existence, interpersonal interaction and the social recognition given by others’.³⁷ We have seen such a recognition speaking from Judith Fox’s presentation – an enormous achievement if we take into account that Fox writes with the added pressure of caring for her husband, while also losing him to dementia.

In summary, the visual image of a patient relates the condition as embodied. Given that concepts of the aging process seemingly fit those of the disease trajectory, a patient’s visual image may, therefore, quickly emerge as one of an elderly person. In addition, presentations of passivity and dependence in a female patient are perceived of as less ethically problematic because cultural concepts link being female by itself to such characteristics. On a second consideration, the core stigma attached to dementia, however, relates to it being perceived of as a condition of the mind. I suggest that this fact offers an explanation as to why, as G. Thomas Couser has observed in ‘Memoir and (lack of) memory’, the Alzheimer’s narratives that achieve larger sales and reviewer recognition centre on male patients: the loss of the male mind appears more profound. Regardless of the patient’s sex, though, the conceptualisation of patients losing their mind can easily turn them into passive beings without their own voice or continued personhood. It is such images, in particular, that will not enhance a positive attitude within society towards the ill – who are mostly, but not always, the elderly – and neither towards their condition and their need for empathetic and identity-affirming accompaniment on their journey.

Contrasting this viewpoint, I will now illustrate how two narrators rise above the disease-imposed temptation to objectify the patient’s body, or to see their mind destroyed. Both Phillip Toledano and Arno Geiger follow the conviction expressed by psychiatrists and philosophers that patients ‘should be treated as wholes’.³⁸ They perceive of dementia as an integral part of their parents’ personality and natural aging.

Alzheimer’s and Aging: The Patient as Subject

Phillip Toledano’s text–photo composition opens with a portrayal of the father with a sunhat.³⁹ Mr Toledano looks absorbed in his world of thought; his gaze is directed downwards, but he demonstrates presence and thoughtfulness; the hat gives him a look of independence and individuality. In this spirit, the son to an American father (an immigrant from Italy) and a French Moroccan mother shows – to follow Steven R. Sabat’s definition – the father in his continuously lived, various social personae. In text and image, Toledano depicts him as the energetic storyteller, gesturing theatrically to illustrate his funny anecdote reported on the opposite page; the self-deprecating man, laughing and, with two pointedly shaped cookies on his chest, demanding the viewer to ‘look at my titties!’; the emotional parent, in tears, affectionately embracing his daughter-in-law; the ailing patient, aware of his wife being dead and his memory fading, with his eyes closed, his cheeks sunken in, half his face in the shadow cast by himself.

Most of all, Toledano portrays his father as active agent of the story beyond his physical death. Mr Toledano’s death makes the bereft son the object, as he is photographed in the pain of loss and separation. This scene strongly enhances the perception that Toledano preserves the father’s dignity. The collection of photos is interspersed with records of the father’s old age (a close-up of his wrinkly hand full of age spots; his exhausted face reaching out of the bath tub; his mouth agape while sleeping) that allude to his imminent death. His actual death, however, is documented in the son’s tear-swollen gaze, directed diagonally downwards onto the opposite, white page that carries at its centre the text: ‘My dad died yesterday’. As such, the question of ethicality regarding the patient’s presentation comes down to how the reader works through the frequently blank pages that leave ample space for deliberations on the patient’s mental state. It comes down to, as Rita Charon would say, ‘the meaning […] created by the meeting between teller and listener’.⁴⁰

Like Fox, Toledano builds on the meaning of absence, as only one photo actually hints, in its blurredness, at the father’s decreasing awareness. This choice strongly suggests that he considers, in comparison to Ernaux or Grothé, the parent’s condition as neither constituting nor altering his personality. Consequentially, Toledano’s work does not – unlike Grothé’s photographs, which are sorted by date – chronicle decline: it represents an ‘ongoing record of my father, and of our relationship. For whatever days we have left together’. The pages of his book are not numbered, as if to signal that the order of the photos could be changed, as they simply depict days spent with an individual, his character and identity – reminiscent of Konek’s attempt to record the father in textual snippets. What is more, given that Toledano had been blogging his photos and experiences throughout these three years, his book authentically records the living time in both image and text.⁴¹

That such blogging seems more ethical than Mary Wilhoit’s online diary, let alone Tilman Jens’s depiction, is intricately linked to Toledano’s reverential presentation of the father as continued parent outside the illness. I see such reverence particularly evident in images that echo personality traits like openness or extraversion that have been attributed to positive aging and suggested as supporting better coping with cognitive decline.⁴² Toledano, for example, writes:

My father had no time for old age. He was like a river. Always in motion, flowing forward with loose-limbed vigor. Sweeping past every obstacle with a smile, dancing and shimmering in the sun. Every door was there to be opened. Every window to be looked through.

Additionally, the accompanying photo depicts a flowery curtain in movement, suggesting that the ‘river’ will continue to flow behind this veil – in the reader’s as well as the son’s imagination. Such closure strongly underlines the father’s autonomy and resonates with Fox’s presentation of her husband that continues to speak to her as the loving wife. Grothé’s portrayal, in contrast, does not leave any room for interpretation outside the mother’s illness. This is particularly true, because her increasingly practical hairstyle and dreary clothes, when living in the nursing home, virtually trace her deterioration and anticipate her death. (As an aside, I used some of Toledano’s photographs in the teaching session, in which I also used Grothé’s series. Confronting students with these images triggered thoughtful and lively discussions on the caregiver’s and patient’s losses, and encouraged me to use illness life-writing more and more in pharmaceutical care, in the conviction that it will also help reshape the general societal dementia narrative.)

The Austrian writer Arno Geiger, by comparison, rediscovers the father in his very illness experience.⁴³ This understanding is symbolised in the leitmotif of the father’s photo, which the father had carried in his wallet since returning from the war, showing his wartime suffering. As this photo is now lost, Geiger realises, ‘dass nicht nur das Foto auf einer Schutthalde gelandet war, sondern auch das Wissen, das mein Vater über seine Vergangenheit gehabt hatte’ [that not only had the photo ended up on a rubbish dump, but so also had the knowledge that my father had about his past; 27]. As the father lost the photo, he loses his memory. As the son searches for this photo, he searches for the father’s memory and the father himself. These efforts echo the urgency of other adult-child caregivers – I am particularly thinking of Konek or Ernaux – to counterbalance their parent’s memory loss in the awareness of their insufficient knowledge, and the imminent ebbing of the parental source of knowledge, of the parent’s past. Consequentially, Geiger places the finding of the photo in the centre of the narrative, when he describes the decision actively to take notes on the father’s changes; these will become the basis of his documentation of the father’s unbroken identity within dementia. This decision is reminiscent of Gillies’s turn of mind, as she switches to writing down her experience of caregiving instead of pursuing the creation of a fictional story. Yet, her decision gains a different notion, since she admits to surrendering to the exhaustion of caregiving, while Geiger attempts to picture the father in his past and present life.⁴⁴

Geiger portrays a father who continues to radiate warmth, wit and wisdom, the fruits of a lifetime: ‘Er hatte seine Erinnerungen in Charakter umgemünzt, und der Charakter war ihm geblieben’ [He had turned his memories into character, and this character remained with him; 73].⁴⁵ In this spirit, he interprets the father’s condition as a continuation of his life-long search for security and belonging, after wartime experiences of imprisonment and illness; hence, as a constituting and integral part of his aging, not like Ernaux as an enhancer of old age. In this respect, Geiger’s approach reads like an implementation of Tom Kitwood’s demands to see dementia as being determined by how health, biography and personality are constellated within the patient’s life.⁴⁶ In fact, as Alzheimer’s destroys the father’s awareness of being at home, everything is now ‘zerrüttet, der Mann, das Haus, die Welt’ [destroyed, the man, the house, the world; 168]. This staccato zooms out from the individual afflicted by the disease to society that is subject to degeneration. It makes the perceived impact of Alzheimer’s disease palpable, and recapitulates what Geiger states earlier:

Alzheimer [ist] ein Sinnbild für den Zustand unserer Gesellschaft. Der Überblick ist verlorengegangen, das verfügbare Wissen nicht mehr überschaubar, pausenlose Neuerungen erzeugen Orientierungsprobleme und Zukunftsängste.

[Alzheimer’s (is) an allegory for the state of our society. The overview is lost, the knowledge available not manageable any more, constant innovation causes problems of disorientation and fear of the future; 58].

This point of view closely links the father’s frailty and cognitive losses to his remaining world of experience, which is ‘[d]er einzig verbliebene Platz für ein Miteinander, das sich lohnte, […] die Welt, wie der Vater sie wahrnahm’ [the only remaining space for a worthwhile being together, (…) the world as perceived by the father; 117]. Geiger gives him his own narrative space: the twelve chapters are separated by sections printed in italics, whose length amounts to up to three pages. These sections reproduce snippets of dialogues between father and son in direct speech, so that the reader directly witnesses August Geiger’s continued awareness, devoid of the son’s interpretation.

This very strategy releases the patient from his ‘exile’ – his, to put it with Hawkins, ‘estrangement, alienation, and separation’ owing to decreasing communication skills.⁴⁷ It makes him all the more ‘king’ of the narrative. In agreement with Jane Crisp’s work, this narrative choice underlines Arno Geiger’s perception that the patient’s talking is a functional means for reconstructing his identity. Such living conversation is an even stronger testament to the patient’s autonomy than Konek’s descriptive considerations of her father’s teaching, and it highlights the acute pain felt by caregivers like Reeve Lindbergh, whose parent stops speaking. This impression is reinforced by several formal differences in these narrative renderings: Konek’s disruptive construction emphasises the need for continuity in her own outlook, while Geiger’s decision to alternate chapters relating the father’s past with those telling of current cognitive difficulties frames his view of the coherence maintained between the father’s past personality and in his present illness. Gillies’s choice to add disrupting chapters that relate socioscientific considerations regarding Alzheimer’s disease, by comparison, emphasises the disruptive powers of the condition itself.⁴⁸

In line with these considerations, Arno Geiger’s final chapter embodies continuity, as it presents the son’s aphoristic deliberations on life, death and fate. Some of these are printed in italics, as if to indicate his learning from the father, with continuity being maintained and parenthood fulfilled. At the same time, this textual disruption visualises the son’s struggle in view of his father’s imminent death. In fact, Arno Geiger ‘wollte über einen Lebenden schreiben, ich fand, dass der Vater, wie jeder Mensch, ein Schicksal verdient, das offenbleibt’ [wanted to write about a living person, I believed that the father, like every human being, deserves a fate that remains open; 189]. This approach strongly furthers an understanding of Geiger’s perception of his story not needing any enforced closure, whose focus would turn, as in Konek’s, Ernaux’s or Gillies’s case, to the caregiver’s survival. Likewise, this choice is evidence of Geiger’s moral stance: it counter-narrates the reifying and infantilising conceptualisation of the patient – which led to his text being seen as a powerful counterstatement to Jens’s publications.⁴⁹ At the same time, such open-endedness avoids writing about the most challenging aspects of the illness experience: when the parent’s loss of awareness and bodily disintegration leave little room for a narrative turn that would comply with the reader’s desire for a positive closure.

Historical, Cultural and Personal Context Influence Attitudes to Dementia

Geiger’s and Toledano’s positive presentations may well be rooted in the men’s upbringing in an environment that values the extended family – Geiger grew up in a remote village in the Austrian mountains, while Toledano was shaped by a Mediterranean, family-oriented education. This view is in tune with Woodward’s considerations of Inoue’s Chronicle of My Mother. Woodward identifies the influence of a less success-driven cultural context in the Japanese man’s literary interpretation of his mother’s Alzheimer’s disease. In particular, she sees him focused ‘on a literary rendering or interpretation of the disease rather than on clinical description of it’, while Roach’s mother merely serves as ‘the vehicle for the subject of the essay’.⁵⁰

In addition, both sons place their emphasis on aging as the final stage of life-long development. They come to see Alzheimer’s disease as integral to aging, which strongly enables their patients and the reader’s positive perception of them. Geiger’s move to include his father’s aphoristic musings is additionally enabling and resonates with Lindbergh’s presentation of her mother. In fact, even though Lindbergh’s mother is, like Grothé’s mother, pictured as sitting on the settee most of the time, we gain the impression of a more rounded presentation of Anne Morrow Lindbergh. This is the case, because the daughter links her mother – in contrast to Tilman Jens’s choices of presentation – to the history of her own work, quoting from her mother’s poems and other writing at the beginning of almost every chapter of the memoir.

Grothé’s and Jens’s renderings of their respective parent is dominated by gender-related interpretations of Alzheimer’s disease, which leads to passivity-suggesting portrayals. At the same time, the presentation and reception of John Bayley’s writings highlight that the patient’s life history strongly influences, perhaps even dictates, how the condition is being perceived; in Iris Murdoch’s like in Walter Jens’s case as a loss of mind rather than an illness related to aging. Patient passivity is similarly seen in presentations that are, like Spohr’s, embedded in, or conditioned by, the strain of caregiving. This onus, as we have seen, may be conducive to reducing the patient to a child, if not the object of the burden. What is more, given that the carer is frequently nursing a patient suffering from later stages of Alzheimer’s disease (as in works by Ernaux or Konek), the adult child’s or spouse’s portrayal reflects the relative’s advanced cognitive impairment and consequential need for guardianship. This constellation further takes away an understanding of the patient’s continued autonomy and self.

We may certainly argue that, once his father was put into a nursing home, Geiger could write so positively, by adopting the perspective of ‘care-free’ distance, when ‘eine Betreuung [zu Hause] auf diesem Niveau trotz intensiver Unterstützung durch die Familie nicht mehr möglich [war]’ [caregiving at home on this level was not possible any more despite intensive support from the family; 134]. He is very much aware of the close interdependence between patient perception and quality of caregiving. This is why he appreciates, as I have discussed in relation to Reeve Lindbergh’s presentation of her mother, true quality time with his father. Such quality time is very clearly dependent, as Geiger remarks, on the father’s wellbeing:

Was für eine Befreiung, wieder Lebensfreude zu spüren […]. Jetzt […] verfügte ich nicht nur über Zeit, sondern auch über Energie [… und der Vater war vom ersten Tag an …] ausgeglichen, entspannt und aufmerksam.

[What a relief to feel zest for life again (…). Now I did not only have time, but also energy and the father was equilibrated, relaxed and attentive from the first day on; 144–145].

I want to expand further on the importance of appreciating the patient’s continued self and identity for her/his wellbeing as well as a positive caregiver–patient relationship by offering an analysis of a short piece of autobiographically inspired fiction.⁵¹ Building on ‘experiences of visiting his grandmother in a nursing home’, the writer and director Josh Appignanesi used ‘some of [his grandmother’s] life history and experiences’ to create the character Eva. Concerned with ‘how strange the world must have looked from [his grandmother’s] viewpoint’, Appignanesi challenges the viewer to deliberate on Eva’s anxieties, social skills, emotional needs and coping strategies in the confrontation with her caregivers in a short film.⁵²

For fifteen minutes, the camera focuses almost exclusively on Sarah Kestelman’s Eva. Only the first two minutes (0:17–2:30) show Eva in her twenties (Natalie Press), waiting for somebody in a forest glade. Taking into account the film’s clues – the sound of shouting voices, gunfire and a departing car in the distance – against general knowledge about the Second World War, the onlooker must assume that Eva takes these signs as evidence of the man she is waiting for being deported. With this opening scene etched in their mind, viewers then witness Eva’s day in the nursing home. They are forced to scrutinise Eva’s face, as she sits in her wheelchair, for almost thirty seconds, before their attention is distracted by life in the home evolving around her. Still, the camera remains on Eva’s eye level; short- to medium-distance shots keep the onlooker fixed on the main character; and long takes collapse diegetic and discourse time into one, so that the viewer feels that she/he witnesses events in real time.⁵³

Eva appears isolated in the scene’s foreground, especially as her silence is set against the caregivers’ and home visitors’ bustling and clearly perceived conversations in the background and, later, loud and disruptive noise from medical equipment. Appignanesi continues to further the viewer’s impression of Eva’s isolation in a family visit scene (6:15–10:20). With over four minutes, it is the longest shot. Even though surrounded by close family – her daughter and two grandsons – Eva appears cut off: the relatives rush through the background, and, busying themselves outside Eva’s perceptual field, leave time for only one extended eye contact (with the older grandson) that lasts thirty-six seconds (9:15–9:51).

According to Robert Edgar-Hunt and colleagues, ‘short films tend to be character driven, it is the characters that progress the narrative’.⁵⁴ In fact, despite Eva’s superficially perceived passivity, the viewer is acutely aware that she thinks and feels throughout, that her tightening of the grip around her shirt collar and breathing heavily suggest deep emotional turmoil. In familiarising us with Eva’s past at the beginning of the film, Appignanesi compels us to read her behaviour and reactions to visual and auditory triggers – such as the voice of a German patient in the home, or the caregivers’ pulling at her stockings and knickers as they want to help her go to the toilet – in the context of this initial scene and, thus, as building on Eva’s memories. This presentation matches Jane Crisp’s above-introduced view that added external information can elucidate the meaning of a patient’s articulation. Likewise, it illustrates observations by The Bradford Dementia Group (who, together with the Wellcome Trust, supported the film’s production) which suggest that patients relate what happens in the now of the care home environment to events in their past.⁵⁵

When Eva escapes from her carers, the viewer becomes most acutely aware that her life history constitutes a major component of her present identity. Once caught and dragged back into her wheelchair, she asserts: ‘you have the wrong one, the wrong one, you have the wrong one. It isn’t me’ (13:00). Reading these events in the light of her troubled past, the viewer must conclude that Eva continues to fear being deported herself, especially as she then implores the caregiver, who kneels down beside her wheelchair: ‘you’ll help me with my papers’ (13:44). The caregiver, clearly uncomfortable with Eva offering ‘anything you want, anything you want, right now’ (13:52) in recognition of his anticipated administrative help, eventually mumbles that ‘everything is in order’ (14:08). While he cannot wholeheartedly enter into the conversation, his reaction mindfully responds to her emotional urgency, and relieves Eva greatly: her facial expression turns into a smile, as she raises her gaze upwards (14:40–14:58).

Eva’s escape also lets us appreciate how well we actually can rely on her face, her mimics and gestures, for conversational clues. Eva disappears from the screen for an entire fifty-three seconds (12:03–12:56), while the camera’s (and viewer’s) gaze continues to focus on her empty wheelchair. During this interval, a bird comes to settle on its handle (12:27–12:45). Whether this bird metaphorically suggests Eva’s freedom to fly during the time of her escape, or heightens the viewer’s awareness of Eva’s personhood being the anchor of information, is left to the viewer’s interpretation. Such ambivalence purposefully fits with Appignanesi’s core aim to ‘encourage people to think about the uncomfortable issues raised by the film’.⁵⁶

Aware that Ex Memoria may solicit strong reactions, the discussion guide takes up half of the DVD’s information leaflet. It particularly includes guidelines for facilitating and structuring discussion and points to an additional ‘learning package about dementia and care’ online. This material covers topics such as ‘dementia and communication’, ‘dementia and relationships’ and ‘what is person-centred care’.⁵⁷ Reading this list sheds further irony on the nursing home manager’s assertion that ‘the residents can spend their time how they like’, while showing a visitor around (3:48). Eva is left alone with her emotional unrest, as none of the caregivers takes extended and loving note of her and her needs. This understanding is particularly troubling, since, in unison with the film’s subtitle, Some Memories Fade. Others Keep Returning, the patient will continue to return to negotiating with her past – as suggested by the film’s closing on a still image of the forest glade from the opening scene (14:58–15:09).

Considering the contrasting presentations explored and discussed in the two preceding chapters – some of them literally and metaphorically remove the patient’s agency, others enable the patient as partner and independent storyteller – in the context of Appignanesi’s portrayal of the patient’s continued self, we are compelled to question the reliability of these accounts. This is also true, since caregivers frequently perceive of themselves as being sufferers in their own right: they try to locate themselves in their relative’s memory loss and unstructured behaviour, and ask questions as to their own mortality and succumbing to the illness.

Ex Memoria makes us painfully aware of what it must feel like to be spoken about. Challenged to deliberate more fully on the individual’s world of experience and perception by filmo-poetic renderings or photographic patient portrayals, we must move on to hearing patients’ own accounts. This is also motivated by the fact that, as Vai Ramanathan puts it (and we have seen in Eva’s case), remembering ‘is not an individual process but a social one’.⁵⁸ In the following two chapters, I explore first-person accounts written by patients. Since writing, by itself and especially in the awareness of cognitive challenge, is already a sign of self-assertion, I particularly focus on how patients perceive of themselves within their condition and within such reifying and infantilising discourse.