Keywords

Es heißt, jede Erzählung sei eine Generalprobe für den Tod, denn jede Erzählung muss an ein Ende gelangen. Gleichzeitig bringt das Erzählen dadurch, dass es sich dem Verschwinden widmet, die verschwundenen Dinge zurück.

[It is said that every narrative is a dress rehearsal for death, because every narrative has to reach an end. At the same time, narrative brings back what has disappeared, because it is dedicated to disappearance.]Footnote 1

Illness is like old age in the way it relentlessly marginalizes its sufferers, transforming them from participants into spectators.Footnote 2

Together with DSS, Helga Rohra and Christian Zimmermann have helped to instigate changes in the Alzheimer’s disease patient discourse in Germany, just as the narratives by Richard Taylor, Christine Bryden and others are witness to global changes. These developments are equally manifest in caregiver accounts, whose portrayals reflect – like Arno Geiger’s, Phillip Toledano’s or Judith Fox’s – conviction of the patient’s continued identity and self. That such representations are more likely found in stories by male caregivers is partly related to their author-narrators’ ‘care-free’ distance. That said, more recent narratives by female adult-child caregivers like Sally Magnusson or Donatella Di Pietrantonio similarly affirm the patient’s continued identity by, for example, directly addressing the patient throughout in the second person; Di Pietrantonio indeed referring, like Toledano, to her mother as a river.Footnote 3

Developments that demand more caregiver support and patient affirmation continue, also against the persistent numeric imbalance between caregiver and patient narratives. With Helga Rohra’s powerful political statement in mind, I will close with two recent caregiver texts. I will illustrate how much and how quickly changes in discourse are now taking place, and how much potential there is for future change, both in the field of caregiving and in the appreciation of patient autonomy, even if there is the strong awareness of the patient’s eventual dissolution. Alzheimer’s disease has become – next to representing harsh biomedical facts – a synonym for caregiver burden, patient concerns and societal fears of aging and dependence. Therefore, allusions suffice to convey truths relating to the dementia experience. My reading of Sarah Leavitt’s graphic memoir and David Sieveking’s book and contemporaneously released cinematic documentary argues that, although the themes and needs in the context of dementia remain the same, the condition’s presentation has become less forgiving, more aggressive, direct and honest than before.Footnote 4

Alzheimer’s Disease Narratives Today: New Media, Germane Stories

Reminiscent of Annie Ernaux’s difficulties to locate and define herself in the imminent absence of her mother, Sarah Leavitt initially works through her experience of the mother’s losses in short prose:

She lost the concept of mother and daughter. She stopped saying my name. She asked me who I was. She did not respond at all when I entered the room. These were all deaths, weren’t they? Or one long, slow death.Footnote 5

Eventually, this Vancouver editor, writer and cartoonist depicts the ‘cruel, relentless progression of losses’ in a graphic memoir.Footnote 6 Yet, reminiscent of narratives by other adult-child caregivers, Leavitt obviously wanted to show ‘the ways in which parts of her [mother Midge] endured’ (7). She draws Midge’s face with constancy for most of the narrative, with only her body posture signalling weakness, like Hank Spohr’s stooping throughout the narrative: her hands are raised and folded in front of her chest, suggesting an intimidated individual’s gesture of protection.Footnote 7 Near the end, two nasolabial lines carve out Midge’s emaciation (118), and in her dying just one line contours her face, rendering her ghostlike (119) and, eventually, giving way to a black shadow (120).

Set against this decline, Leavitt ends this series with the reproduction of an actual drawing of her mother, prepared at the death bed (123). This choice highlights, together with copies of several of the mother’s scribbled notes, the diary-like nature of Leavitt’s narrative and her attempt to create:

this book to remember her as she was before she got sick, but also to remember her as she was during her illness, […] pieced together from my memories, my notes, and my sketches […]: the tangled story of my mother, and me, and Alzheimer’s. (7)

Yet, Leavitt arranges the comic’s rectangles very systematically, hardly interrupting them in their size, as if they should bring order into her jumbled notes – and the mother’s mind. Leavitt’s partner describes Midge’s mind as ‘the garden this summer […]. Tangled, but with spots of brightness’, and Leavitt herself frames this with a wild arrangement of grass and flowers, a snail, and, difficult to identify, a dead animal (114).

Such attention to detail and allusion to despair and decline are characteristic of Leavitt’s presentation, in which dark spaces and black/white inversion become particularly meaningful. Leavitt describes herself as inspired by work ‘capturing gesture, focusing on the energy of the pose more than the details of the anatomy’.Footnote 8 In this spirit, her drawings are reduced, and reduce, to the essential, forcing us to appreciate the raw upset of the diagnosis and its implications: Midge’s insight ‘I have Alzheimer’s’ (25), in white print on black, does not leave room for hope, just as the blackness engulfing the sad-looking mother does not leave any breathing space.

This speechless emptiness lends itself to a powerful depiction of the caregiver’s loneliness in the medical discourse, which Leavitt continues to perceive as dominant and isolating, even after twenty-five years of caregiver agency and politically motivated writing. Three small black figures – mother, father and daughter – are depicted in a vast empty space in front of the closed door to the doctor’s office (35). The doctor himself is distant from both patient and caregivers, behind his barrier-like desk, and the interview situation leaves the hunched-up mother surrounded by assessment questions that are forced upon her in bold print (36).

Just as Judith Fox could build on the societal awareness of the condition’s implications, Leavitt’s narrative thrives on all she can draw, without having to comment on it, anymore and any further. A single-panel page shows the mother lonely and reduced (since covering just about ten percent of the page), with her back towards the onlooker; she only wears a top and underpants, with her trousers around her ankles (81). Likewise, the father, in his need of relief from the daily burden of caregiving and ‘desperate for freedom’, is shown as completely wrapped in a rope, with just his yelling mouth and splayed hands sticking out (117).

Leavitt’s mercilessly honest presentation is certainly enabled by the narrative’s graphic form, not least, since, as Ian Williams claims, autobiographical comics ‘come from a radical background that respects self-publishing and small scale circulation’; and in requiring narrative brevity, the comic’s disarming pictorial openness is complemented by textual directness rather than figurative language.Footnote 9 For example, Leavitt can write without the reservation suggested in the use of the child metaphor in Annie Ernaux’s and other earlier narratives, bringing the truth about her mother’s bathing to the point as follows:

Mom’s clothes were piled on the floor. There was dried shit in her underwear. The bathwater was full of small disintegrating bits of it. She was dipping her washcloth in the water and rubbing it over her skin. She had no sense of smell, true. But she could see. She just couldn’t recognize. Couldn’t recognize shit, dirt, shame. (60)

Leavitt lives, like Konek, at a distance from her parents, but comes home more and more often to share time with her mother, and eventually takes on caring for her. Yet, she ‘couldn’t do the work I’d brought with me to Fredericton’ (73), and admits that she ‘was sick of trying to fill in the gaps in her speech. I was sick of helping her. I was sick of her being sick’ (73). This anaphora illuminates Leavitt’s speechlessness in the confrontation with her mother’s condition. We may empathise with her frankness even more, when reading what the graphic presentation suggests to be taken from her diary entries: ‘It gets hard to see someone as a person when they’ve become a list of needs: BATH, CLOTHES, BRUSH TEETH, WALK, FOOD, ETC’ (85; emphasis original).

As such, Tangles is, as its subtitle suggests, Leavitt’s story as much as it is her mother’s, especially since Leavitt felt that ‘[a]s my mother changed, I changed too, forced to reconsider my own identity as a daughter and as an adult and to recreate my relationship with my mother’ (7). Leavitt’s memoir becomes the space, in which she can come to terms with herself and her coming out. And her narrative gains further meaning, because it deals with the added complication of providing dementia care in a heterosexist environment, when Leavitt, for example, openly writes:

I could never have trimmed Mom’s pubic hair. I never touched her between the legs without toilet paper or a washcloth between us. /I believe this was partly because I had touched women’s bodies for sex, and because sometimes I feared being accused of perversion because of it. That all added to the weirdness of bathing and grooming my own mother in the first place. (111)

Leavitt does not make her sexual orientation a central topic, even though her being confronted with preconceptions against ‘dykes’ is alluded to throughout her drawings. Much rather, her narrative opens the discussion and awareness that service providers should ‘begin to critically consider their attitudes and responses to carers whose social identities are increasingly diverse’, because the caregiver’s experience does, as we have seen, strongly impact on their relationship with the people they look after.Footnote 10 This analysis echoes Benjamin Fraser’s exploration of a father’s graphic narrative about his daughter María with autism. Fraser perceives of the author-narrator’s self-representation as radically enabling, because it helps him to externalise:

both his own frustrations with the social situations that surround disability and his love for his daughter, and in the process he also gives voice (or better, shape) to María’s own struggles, joys, and ways of thinking in ways that only a parent might be able to do.Footnote 11

A graphic narrative is more than a one-dimensional text that necessarily forces ‘one view’ on the reader, or a photograph, of which we assume that it depicts reality. A comic shows, as Douglas Wolk points out, ‘things and people, real or imagined, moving in space and changing over time, as transformed through somebody’s eye and hand’.Footnote 12 We can, in fact, read Leavitt’s pictures as Midge’s story of her illness. We can also read it as Leavitt’s confrontation with, as well as her interpretation of, that story. In its two-dimensionality, a graphic memoir offers both: direct confrontation and personal perspective. Seen in this light, Leavitt’s narrative is doubly personal and political, as it challenges onlookers to question their reaction to small detail and, thus, enforces their search for the larger truths. Its many black and white panels, like Phillip Toledano’s white pages, open space and time for the viewer to work through Leavitt’s agenda, and the large, quadratic picture book format etches its contents into our memory: actively to participate in the negotiation of a new sociopolitical dementia discourse.

Just as Leavitt opens new ways of looking at caregiving and broaching caregiver concerns that only recently have attracted attention, David Sieveking explores a new medium and perspective in filming his mother’s dementia. Exhausted from daily caregiving, Sieveking’s father Malte is in need of a holiday, and David is ready to look after his mother Margarete (Gretel) for two weeks. Departing from this initial constellation, filmmaker Sieveking and his friend, cinematographer Adrian Stähli, follow the family over a period of eighteen months, the collected material eventually yielding a ninety-minute motion picture.Footnote 13

Charges regarding the moral impropriety of publicly showing the mother’s decay followed. For example, Rainer Erlinger questioned Malte Sieveking’s reading out of some of his wife’s diary entries, without Gretel being actually aware of this breach of confidentiality.Footnote 14 Similarly, a scene one third into the picture was debated at a public viewing, because Sieveking exposed his mother’s weakness.Footnote 15 In this scene, Sieveking takes his mother to the local swimming pool (29:40), encouraging her to join him in the water, even though she continues to claim: ‘Ich kann nicht mehr’ [I cannot anymore; 30:07–30:14]. Gretel eventually trudges away from the pool, begging, the camera closing up on her face, ‘können wir irgendwo hinsitzen, wo wir nicht sterben’ [can we sit down somewhere, where we won’t die; 30:58]. Pressured on this scene, Sieveking discloses that the attendant had wanted to arrest him, once aware that the scene was being filmed. However, the son further reveals that he had encouraged his mother so much, because she had truly enjoyed a swim several weeks earlier. His admitting to have ‘too fervently tried to revive what had been before’, lets us appreciate Sieveking’s personal investment underlying the making of this film, which he intended to become a ‘Denkmal für die Mutter’ [memorial for the mother].Footnote 16

This memory-making intention resonates with the meaning Konek, Geiger or Lindbergh assign to their narratives, and is captured in the leitmotif used in the marketing of the film. In reference to the opening scene that quickly zooms in on a wall of Gretel’s Post-it® notes, accompanied by Sieveking’s voiceover that ‘at some point, I noticed all my mother’s notes’ (01:06–01:12), the film poster as well as DVD cover and menu incorporate this Post-it® motif. This strategy highlights the film as a space for creating memory, while equally emphasising the erosion of memory in Alzheimer’s disease. One note reads: ‘DAVID ist mein Jüngster und dreht einen Film über mich’ [DAVID is my youngest and is shooting a film about me; emphasis original].Footnote 17

That the cover of his eponymous book, which preceded the film release by three weeks, does not explore this Post-it® motif underscores Sieveking’s understanding of the complementary purpose of his textual narrative; an interpretation supported by the book’s slightly differing subtitle.Footnote 18 The book, like I discussed in relation to Thomas DeBaggio’s text, embodies the note itself. Indeed, I take the timely coordinated publication of book and film as the key to Sieveking’s mindful contribution to shifting the societal dementia discourse. In supplementing what a motion picture aimed at a broad audience cannot and should not show, the book offers contextual background, while also conveying an ethical and political framework for the film.

Like other caregiver narratives, the text’s first half details the long path to Gretel’s diagnosis, and her shrinking ‘zu einem Schatten ihrer alten Persönlichkeit’ [to the mere shadow of her old personality; 67], and leads up to the time span depicted in the film. The documentary ends some time before Gretel is admitted to hospital. Her actual time in the hospital (‘Krankenhaus’) is recounted in the book’s second half. Sieveking’s play on words ‘Im kranken Haus’ [In the sick house; 142] anticipates the family’s grappling with questions regarding end-of-life care, as Thomas Graboys had broached them, and highlights insufficient support from healthcare staff. Likewise, the chapter on an ‘Irrtum zweiter Klasse’ [Error of the second class; 161] openly denounces the money-related quality of attention patients receive in the German healthcare system.

Anticipating the ethical issues relating to the film’s production, Sieveking freely admits that ‘Gretel looked less advantageous for the camera’ (155), once she was in hospital.Footnote 19 But in view of his mother’s rapid deterioration and nearing death, he ponders, reminiscent of Arno Geiger’s reflections, how to let the film come to an end: ‘to leave it as it is, simply ignoring the last phase in Gretel’s life or just mentioning it with a text, does not seem correct’ (210). Eventually, he opens the film again, after cutting was already completed, to add a final scene ‘six months later’ (84:06), once Gretel has returned home from the hospital. In this scene, Mrs. Sieveking rests on a highly functional hospital bed, surrounded by children and grandchildren (84:15–85:25). The camera captures Gretel’s face smiling as she takes in her husband’s nearness for almost half a minute (84:58–85:25), before the screen darkens and text appears which dedicates the film to her, listing her date of birth and death.

While Margarete Sieveking’s emaciated face and slow movements encapsulate all that Sieveking had ‘not wanted to document with the camera’ (210), this scene adds to the viewer’s deliberations on patient dignity, spousal duties and the quality of end-of-life care. Film and book push this discussion even further, because filming per se reveals itself as caregiving, if not therapy, as Sieveking remarks:

In der Gegenwart von Kamera-, Tonmann und mir, drei jungen Männern, die sich stark für sie interessierten, blühte meine Mutter richtiggehend auf. ‘Die beste Therapie für Gretel sind David und der Film!’, fand mein Vater.

[In the presence of camera, soundman and myself, three young men, who were very much interested in her, my mother really blossomed. My father found that ‘the best therapy for Gretel are David and the film!’; 16].

The one question that then returns again and again in reflections on caregiver life-writing is, as Erlinger mentions in his film review, whether these narratives make the patients into Alzheimer’s disease ‘victims’; whether, as seen in Walter Jens’s case, they do not leave any space for the recognition of their achievements and continued memory, while, in the present case, helping Sieveking in his career development. I want to consider this question by looking back to similar accusations made against John Bayley. Bayley retorted that his wife had given herself to science in consenting to a study carried out on her linguistic abilities in correlation to her brain atrophy.Footnote 20 Murdoch actively worked for the cause of dementia, aware of the power of her own prominence. Similarly, Sieveking and his family perceive the showing of this film as a continuation of Margarete Sieveking’s political commitment. For Bayley, Murdoch’s memory as a writer will continue alongside of these efforts, since, as the scholar consoles himself, ‘[h]er genius lives in her books’ (560), ‘Iris’s books live on’ (582); she is ‘memories, images in the mind, words in books’ (631). Sieveking offers a testament to his mother that gives the cinemagoer the feeling that dementia can leave the patient, like Helga Rohra, smiling, and the caregiver aware of her continued presence.

Also, the film appears as ‘an open journey’, exposing dementia as a condition of spontaneity and continued potential.Footnote 21 The story’s twists and turns which eventually pitch it to a wider audience are initiated by Mrs. Sieveking herself. She unexpectedly pulls her son out of the lethargic exhaustion of his first week of caregiving by asking: ‘are you coming with me to Stuttgart’ (33:21), her place of birth. It is this move that prompts Sieveking to look into his mother’s past, and contributes to the film being blended with black and white photographs as well as short scenes from old film recordings. These documents highlight Gretel Sieveking’s activities in a radical socialist student organisation during the late 1960s. Their arrangement as part of the film about the mother’s illness underscores Sieveking’s emphasis on the mother’s activity in the present as building on her pursuits in the past; a conceptualisation that distances Sieveking’s motion picture from Grothé’s uni-dimensional photographic series. That Sieveking concomitantly discovers that his parents had led an open marriage further appeals to the cinemagoer’s desire for a happy closure and outlook: Sieveking can document a positive effect on Malte of caregiving for his wife, in that it makes him realise that ‘she did not receive the love she deserved’ (221). At the very same time, this relationship storyline challenges the general public as well as the medico-clinical researcher to reconsider their conceptualisation of the condition as one of decline and loss alone.Footnote 22

Stories of Dementia: Pedagogical, Political, Representative

Writing the story of one’s own illness, or that of the parent or spouse, is usually aimed at offering an alternative to the culturally dominant narrative regarding that illness.Footnote 23 I set out to consider every available book-length patient-authored text. But at the same time, the present analysis had to fall back on a small selection of many caregiver memoirs, the choice of which, I am fully aware, represents a political act in itself. The numeric imbalance between caregiver-authored third-person accounts and patient-authored first-person narratives on the book market easily furthers sociocultural preconception of patients as being unable to narrate their story and, therefore, unaware of themselves as individuals. This passive stereotype is then further enhanced by caregivers, who place, under the impression of the patient’s accelerated aging and increasing need for help with daily chores, questions as to their own identity and future into the centre of their story. Additionally, narrators who feel particularly exposed to the stress and strain of caregiving for patients in advanced stages of the condition understandably tend to report the relative as both cause and object of their burden.

It is the patients’ fear of this loss of recognition and standing within their social environment and, thus, their identity in the later stages of their condition (when others unavoidably write about them) that brings them in the early stages of their illness to challenge such reification. Indeed, they persuasively emphasise their agency by speaking from a position that purportedly precludes narration from the first-person perspective, and by choosing narrative forms that conjecture control of the illness process.Footnote 24 Their emotional urgency, in turn, becomes – as G. Thomas Couser observes in his analysis of breast cancer and HIV/AIDS memoirs – most apparent from the time delay between the composition of their narrative and its consumption, as it harshly dismantles their ‘tale’.Footnote 25 Likewise, the stark difference in meaning that patients as compared to caregivers impose on images, and the lack of successful formulation, for example, of their illness as journey highlight their struggle to assert themselves in a condition that increasingly compromises their independence.

Set against these considerations, the powerful pictures drawn by relatives, who perceive of themselves as partner rather than sole nurturer or consider the condition as integral to aging, match patients’ self-portrayals and identity-affirming needs. Nevertheless, even in enabling presentations and personal constellations where caregivers can create opportunities for quality time with their relative, helplessness and feelings of guilt remain, as Reeve Lindbergh points out:

In a situation like mine, there is memory, and there is frustration, and there is grief, and there is guilt. In fact, there is more guilt than anything else. No matter how good the care provided, no matter how much attention or how much money is spent to address their needs, no matter how extensive the medical treatment lavished upon our beloved elders, there is always guilt, and it is always the same. (24)

Ultimately, both patient and caregiver do, despite their different agendas, follow the urge to draw continuity, where memory loss, increasing dependence and nearing death destroy coherence. Considered from this angle, I agree with John Wiltshire that the confrontation with Alzheimer’s disease condenses all illness experience most acutely, and a narrative about dementia perhaps offers the fullest view of what it means to be ill. Rita Charon has summarised this possibility for Rachel Hadas’s narrative, which also particularly centres on feelings of guilt in relation to the husband’s placement:

While Strange Relation relates one illness and the life of one family, it is also, poetically, about all illnesses, all families, all struggles, all living. The art achieves the dual life of the universal and the particular, marking it as timeless, making it for us all necessary.Footnote 26

As Alzheimer’s disease embodies the loss of personhood, writing about it becomes a searching for meaning-making substitutes, where metaphorical language turns into expressions and assertions of the self as much as the narrative itself.Footnote 27 As Arno Geiger tells us in the quote offered at the beginning of this chapter, the confrontation with death brings narratives by patients and caregivers together. The title of this work anticipated it: dementia narratives are a form of life-writing. The condition is perceived as threatening the mind and, thus, personal identity with such intensity that it cannot simply remain a crisis and, thus, a chapter within (the musings on) a life.Footnote 28 Instead, it must become the central focus of a narrative that explores the full existential implications of the condition and asserts that cognitive abilities and consciousness are not the lone identifiers of a person.

In the light of the ever-aging population, Alzheimer’s disease is the most feared neurological condition today; and it may remain so for several more decades, given that a complete understanding of its cause continues to be elusive and its treatment therefore only symptom-based and, currently, of limited efficacy. This book has explored how individuals affected by the condition – caregivers as well as individuals with dementia themselves – engage with and aspire to shape the culturally dominant dementia narrative. It has done so by reading their narratives against what have become Health Humanities canonical texts, only alluding to psychoanalytical and phenomenological implications for example in the context of sons’ life-writing.Footnote 29 One of the core aims of this study was to amplify the voices of those whose texts it critiqued. As such, the discussion has concentrated on the immediate relevance for policy changes and healthcare approaches of the author-narrators’ poetic choices and political concerns. Concurrently, it has become clear that their intentions and needs have shifted over the thirty-year period covered in this analysis, raising perhaps the question as to a more expansive chronological contextualisation of these developments, not least given the historical timings of the studies, for example, by Wiltshire, Woodward and Cohen.

What this book, for example, could not do in its space and scope is more fully to consider the historical grounding of frequently reifying and infantilising patient presentations. Thomas DeBaggio’s first narrative, for instance, negotiates with the recent scientific dementia discourse to an extent that invites a deeper reflection on changes in this discourse since the condition’s inception in medico-scientific terms in the 1880s.Footnote 30 Taking then into account the power-shifting effects of life-writing discussed in this book, it is not unlikely that these developments impact also on how scientific researchers and practicing clinicians have approached the condition over time. I am addressing the dynamics between scientific, medical and literary renderings of dementia across such an extended timespan in future work, also in the light of recent observations regarding shifting notions of memory and forgetting.Footnote 31

Also shifting notions of aging over an extended timespan will further illuminate the claims made in this book, whose focus remained on what is usually referred to as the Western world. But population aging and age-related cognitive decline also increasingly challenge economies like China, India and South Asia, and this book’s multilanguage approach suggests that its insights likely expand to other cultures. Most of all, these insights demand that the patient’s continued identity – as also being more and more dependent on the caregiver’s support (and eventually necessary presentation) and society’s perception – become the mainstream Alzheimer’s disease narrative. This is especially so, since, as Nortin Hadler emphasises:

Aging is not a disease, and frail elderly persons are not a burden. Aging is a privilege of life in a resource-advantaged society, and the elderly, including frail elderly persons, enrich that society.Footnote 32

In the awareness of the little time available to them, both patients and caregivers draw energy and help from their act of writing. This very writing becomes their and the reader’s opportunity to bring about healing through the changes that society should realise in learning from such writing. Giving such narratives increasing attention and using them for educational and training purposes will sharpen society’s eyes for disabling and belittling misrepresentations, and pave the way for thoughtful transformations in the perception of dementia and its sufferers.Footnote 33 These transformations will impact on the ethical and socio-economic consequences of our dealing with an aging population; they will influence a committed alleviation of carer burden through social support systems and altered healthcare policies; they will modify sociocultural attitudes towards early-stage demented patients; and they will frame a more considerate care for patients with advanced conditions.