Keywords

The 36-hour Day was about the best one I read. There was a lot of good information there, but it was mostly for caregivers. I could not see where any of it applied to me. I am just not like most of the Alzheimer’s patients I read about. I can still think, talk, walk, write and do almost anything I want.Footnote 1

The fullness of who I once was will be seen in the simplicity of who I am within, surrounded by layer upon layer of memories.Footnote 2

In 1998, Lawrence Cohen identified the practical knowledge of Alzheimer’s disease in the American and Western European context to be organised around two manoeuvres:

First, it involves an iteration of its pathology as opposed to its normality, despite the lack of a cure. Second, it involves a circulation: of legitimate suffering, between diseased and care-giving bodies.

Cohen notes an ‘exchange of symptoms – the body of the caretaker for the body of the Alzheimer’s patient’, and observes how families were seen as being victimised by patients and their care.Footnote 3 Moreover, he argued that the general public appreciated a patient’s personhood and subjectivity only in her/his choice to alleviate the caregiver’s (in Cohen’s phraseology, the caretaker’s) burden. To illustrate his point, the ethnographer specifically referred to the ‘voice’ and ‘action’ of the patient Janet Adkins, who in 1990 ended her life with the help of the euthanasia activist Jack Kevorkian – a case that was broadly covered by the media.Footnote 4

Cohen undertook his field research in India in the decade between 1985 and 1995, when patient life-writing was still in its infancy. From the vantage point of two decades’ distance, the phenomena of exchange and circulation are perhaps most tangibly reflected in the numeric imbalance between caregiver and patient narratives from the condition’s earliest appearance in book-length accounts: the patient is the told-about entity of care. This perspective is in line with John Wiltshire’s particular emphasis on dementia as disrupting the pathographer’s meaning of life, which he developed, in the year 2000, against an aesthetic analysis of two narratives that take the caregiver’s point of view.

With Appignanesi’s portrayal in mind, I argue that no narrative will embody Wiltshire’s discernment relating to identity more directly than the dementia patient’s personal account. If society in general – as much as policymakers, health-economists and medical practitioners – were to continue to overlook the patient, the perception of dementia and its bearing on identity would remain utterly limited and partial. This is especially true in the light of the advocacy speaking from both Larry Rose’s and Christine Boden’s statements, and insights gained from an analysis of interactional processes in patient narratives: ‘AD patients, like those of us who are normal, are sensitive to audience, setting, topic, time, and so forth’.Footnote 5

In other words, patients may well present and organise their life story with a specific agenda in mind. Consideration of patient-authored texts will significantly contribute to an understanding of the patients’ attitude towards their condition and precarious identity. Moreover, it will enhance a discussion of how to adapt healthcare policies to changing demographic requirements. In this and the following chapter, I will introduce the few patient narratives that have been published in book format since 1989. Their perspective supplements the medico-scientific and healthcare discourses that continue to inform caregiver perceptions. It also provides direct action points for the development of a more patient-centred approach to caregiving.

My discussion of caregiver life-writing has revealed significant changes in patient representation over a thirty-year period. The discussion of patient narratives here is similarly organised according to their publication date. This approach will allow for a closer scrutiny of how patients’ presentations negotiate with the slowly changing mainstream dementia narrative. This insight will further an understanding of the power and pressure lying in the societal conceptualisation of dementia and the healing effect an open acceptance and discussion of dementia can have – not only on the caregiver as we have seen above, but especially, and in the first place, on the patient.

The present chapter looks at patient narratives that emerged up to the early 2000s, during a period that saw, as Cohen would have it, caregivers as secondarily victimised. It is in this atmosphere, I so argue in my analysis of the accounts by Robert Davis, Diana Friel McGowin and Larry Rose, that patients follow traditional narrative concepts. In agreement with early criticism of these narratives, I identify them as deploying linear plots and established myths.Footnote 6 But reading them from the vantage point of greater temporal distance, and in the context of Hawkins’s illness narrative criticism as well as Couser’s ethical considerations, I believe these authorial choices to be purposeful for the patients’ wider political cause. At the time of publication, these narratives appealed to a readership primed for the caregiver’s accomplished account. Complying with their readers’ expectations, patients could begin to gather an audience that learned to appreciate the patient’s continued personhood. It is against this changing background that slightly later published narratives could attempt a presentation that reflects the patient’s narrative capabilities more credibly. My comparison of Cary Smith Henderson’s narrative fragments to Thomas DeBaggio’s highly articulate and literary composition illustrates how patients struggled to find narrative forms that would embrace the plot of their disease, while leaving space and scope for continued identity and personhood within this trajectory.

I close this chapter with an analysis of the account of a Harvard cardiologist about his Parkinson’s disease with rapidly progressing Lewy body dementia. Building on life-long experiences from the vantage point of a practicing clinician, Thomas Graboys now takes the viewpoint of the patient. His change in perspective enables him to bring the patient’s agenda to an audience that authoritatively includes the medical profession. Several years into patient life-writing, this agenda now can move on from the recovery of identity and personhood directly to address matters such as end-of-life treatment and choices.

Tradition Sells: The Journey into Darkness

The first patients reflecting on their Alzheimer’s experience in book-length narratives report on My Journey into Alzheimer’s Disease, describe their Personal Journey through the Maze of Alzheimer’s, or demand to Show Me the Way to Go Home.Footnote 7 Taken as such, these patients picture their illness experience as a journey, which, in Arthur W. Frank’s understanding, is ‘a passage through real and symbolic dangers in preparation for the opportunity of a life enhanced by that passage’.Footnote 8 In her book on pathographies, Anne Hunsaker Hawkins illustrates that formulation (like the journey myth) gathers:

together the separate meanings, the moments of illumination and understanding, the cycles of hope and despair, and weaves them into a whole fabric, one wherein a temporal sequence of events takes on narrative form.Footnote 9

However, the degenerative chronicity of Alzheimer’s disease necessarily prevents patients from truly returning from their illness experience, in terms of remission or healing. Therefore, the question is: how do these patients actually formulate their journey?

Robert Davis, vicar of one of Miami’s largest churches, faces the harsh end of his career in his early fifties. Like Konek, Grothé and Geiger, he juxtaposes past to present, specifically telling readers in some detail about his childhood and his coming to Christ. In this way, he enhances the reader’s understanding of how, in his illness, ‘[t]his personal and tender relationship that I had with the Lord was no longer there’ (47). He uses imagery of sunlight to describe himself as living in the enlightened service of Christ. Images of darkness and an illustration of himself as ‘sink[ing] more and more into the moonlight’ (81), in turn, depict the contrast between his former life and the disease-enforced biographical disruption on a metaphorical level. In this context note how the world of experience behind notions of darkness and moon as compared to light and sun links to the concept of orientational metaphors, as illustrated by Lakoff and Johnson: light and brightness are linked to health and life, with the brightness itself alluding to the metaphoric illumination of the mind; darkness identifies with concepts of downward orientation and, thus, decline, sickness and death.Footnote 10 For the vicar, these images convey the full incredulity of his situation.

Davis opens his account with the passivity depicting metaphor of being a ‘victim’ (18), which strongly resembles Spohr’s helpless verdict image, and resonates with Larry Rose’s imagery that underlines his perception of helpless innocence. Specifically, Rose describes his initial confrontation with memory loss as feeling:

the uncertainty of a person experiencing a hurricane or a tornado for the first time; the terrifying sensation that comes on realizing that what should be firm and solid is no longer so, and cannot be relied upon. (4)

Yet, Davis quickly moves on to interpret his illness as a godsend. In obedient acceptance, he sees his life turned ‘from moonlight to sonlight’ (129), when he comes to understand that:

instead of my reaching out to Christ by prayer, intellectual determination, sheer bull-headed faith, or by aggressively claiming the promises of Scripture, Christ reached down and held me close to him […]. From now on, my lot in life would be to be especially held by the Shepherd, letting him fully care for me. (55–56)

In this way, Davis is able to accept his expected chronic decline as a further lesson to learn ‘the pure simple faith of a little child’ (130), creating continuity between his life before and in the illness. Both fit into his biography of ‘servanthood’ (23). Similarly, Larry Rose maintains continuity by aiming to follow what his son’s introduction to his narrative describes as his motto, namely never to:

indulge in worry or self-pity. It will tear down your personality and destroy your skills. The only thing that will make any situation work is the attitude you develop toward it. (viii)

Indeed, Rose’s publishing a further narrative in his more advanced condition, as well as his involvement in the Dementia Advocacy and Support Network International (DASNI) additionally witness to his resilience.Footnote 11

This very conceptualisation of continuity enables Davis to interpret disease-caused behavioural changes as furthering his spiritual life. In addition, it avoids disabling connotations of the medico-scientifically bolstered child metaphor that depict Walter Jens’s exposedness or Hank Spohr’s dependence. Taken together, Robert Davis’s story follows the rites of passage that Hawkins identifies as core constituents of the patient’s journey. Specifically, Davis’s separation from his former life as a pastor is followed by a phase of learning, which, eventually, leads to his incorporating the condition into his life-long vocation as that of a strong Christian believer. Charles Schneider takes similar comfort in his Christian faith but pictures Alzheimer’s as ‘beast’ and ‘intruder’, which suggests more ambivalent feelings.Footnote 12

Likewise, Diana Friel McGowin takes us from initial memory lapses at the beginning of her ‘unplanned journey’ (1), through to her ‘early retirement’ (64), at the age of forty-five. She places this fact in the centre of her text to emphasise her concern about losing her identity as an accomplished legal secretary.Footnote 13 McGowin has enormous difficulty in accepting her condition:

I recoiled in alarm at each additional loss of memory, and concentration. But I would not confide in family members as each additional loss occured. Instead I continued playing a camouflage game of ‘I’ve Got a Secret’, long after everyone knew. (97)

Following this initial phase of denial, she begins to articulate, as Basting puts it, ‘the contradiction between her own feelings of self-worth and the depletion of her cultural value as a victim of Alzheimer’s’:

If I am no longer a woman, why do I still feel I’m one? If no longer worth holding, why do I crave it? If no longer sensual, why do I still enjoy the soft texture of satin and silk against my skin? If no longer sensitive, why do moving song lyrics strike a responsive chord in me? My every molecule seems to scream out that I do, indeed, exist, and that existence must be valued by someone! (114)Footnote 14

In time, McGowin refocuses her energies on her remaining abilities. Such shifting notions and rites of passage echo the stages of grieving that Elisabeth Kübler-Ross had identified for the process of mourning. This sequence is certainly transferable to the emotional upset resulting from McGowin’s confrontation with memory loss.Footnote 15 But, especially in the light of patients’ own assertions, I deliberately refrain from the self-suggesting comparison of ‘death’ to ‘loss of self’. Confirming this perspective, McGowin energetically initiates the first patient-centred support group in her hometown Orlando, setting off a quickly spreading, nationwide movement that propagated patients’ self-assertion.Footnote 16

Nonetheless, the demonstration of such animated eloquence within a coherent narrative furthers the reader’s inclination to view Davis, Rose or McGowin as fully able persons rather than cognitively challenged Alzheimer’s patients. This is particularly true, since their erosion of memory allegedly places them beyond meaningful personhood, as has been claimed by social as well as clinical scientists.Footnote 17 However, these patients are all in stages of the condition that still allow them to perceive of the implications of their individuation being undone through their lack of narrative ability.Footnote 18 This very awareness leads them to ‘describe’ rather than ‘perform’ their condition, with the help of their acknowledged partners, and choose self-saving metaphors like the maze.Footnote 19 Davis publishes ‘with help from his wife, Betty’ (3), and McGowin closes with an epilogue ‘by Diana McGowin & Jack McGowin’ (117).

I see these considerations confirmed, when looking into Larry Rose’s second text, published eleven years into his diagnosis. In this narrative, frequent typos witness disease progression. The same is true for his emphasis on significance rather than temporal sequence in chapters that reflect short attention span, as they hardly extend over more than two to three pages. Notably, Larry’s Way has always only been available as print-on-demand – as are several other patient narratives I am referring to in this discussion. This fact tellingly discloses the publisher’s concern that the story’s lack of coherence would not make it a big seller, and it confirms that coherent narration contributes to the construction of a societally more valued self, on a personal and public level.Footnote 20

Nevertheless, some texts perform the condition-enforced limits of expression, particularly in more advanced stages of the illness, while still serving the patient’s agenda. Yet, I believe that such choices strongly rely on the first dementia patients, who stepped out of the shadow, to assert themselves in the public eye. Only once their identity was reclaimed in narrative forms accessible to the general reader, could more fragmented narration be accepted and published.

Form and Contents: Narrating Alzheimer’s versus ‘Account-Ability’

Cary Smith Henderson could not complete his book independently, since ‘he still lives, but only in the sense of a beating heart and lungs that continue to take in air’, as his wife informs us in the introduction to her husband’s narrative.Footnote 21 The book’s subtitle, An Alzheimer’s Journal, already suggests that its narrative form does not follow what we consider a classical autobiography. Henderson used a tape recorder to collect his moment-in-time thoughts and feelings over one year of his living with Alzheimer’s. His daughter, later, transcribed his recordings in their original, disoriented structurelessness that we strongly witness in Henderson’s inability to locate himself in time; Basting reads this as reflecting Henderson’s lacking ‘sense of beginning, middle, or end’ in his journal:

No two days and no two moments are the same. […] I have no sense of time. […] it may be just a short time that she’s been away – it feels like forever […]. It’s just some kind of time warp. (47)Footnote 22

Equally, we behold the repetitive nature of his musings that mainly centre around deprivation and loss, as ‘Alzheimer’s is […] a maimer. I’m sure, a maimer of – what did I say? – certainly a killer of people’s thoughts’ (59).

The very repetitiveness of Henderson’s fragments is the narrative performance of compulsiveness and short attention spans that Arthur W. Frank conceptualises as ‘chaos narrative’. As I emphasised in the introduction, Frank’s original description relates to caregiver accounts that evoke similarities with Ernaux’s unstructured fragments. However, in my view, that his remarks perfectly match the patient’s narrative performance tellingly highlights that patients can, indeed, narrate their fractured self.

As such, we come to appreciate the full picture of Henderson’s different social selves, which Phillip Toledano so effectively depicts for his father, only in conjunction with his wife’s introduction to the book. This introduction relates Henderson’s characteristics as husband and history professor. Henderson, in turn, perceives of himself as a ‘very second-class citizen in the real sense of the word’ (74), but still sees himself as an ‘onlooker and philosopher’ (74). This very much suggests his continued sense of self-worth and desire to act, as also observed by Basting in relation to Henderson’s participating in a drug study. About this contribution, Henderson feels:

I’m doing something not only interesting but I think something that’s needed [... which] makes me feel very good […]. It makes me feel like I’m not going to just rot in my old age, helpless and stupid (63).Footnote 23

I even believe that we appreciate Henderson as a dependable ‘onlooker’, since his deliberations strongly resonate with Susan Sontag’s conceptualisation of the ‘kingdom of the sick’.Footnote 24 His comment reveals Henderson’s clear awareness of his precarious state and alerts the reader to the negative impact of the frequently disabling, since passive, patient conceptualisation perceived in the accounts of, for example, Betty Baker Spohr or Tilman Jens.

Despite being the author of the book in this precarious state, Henderson must become its object, when his wife reports on him and his daughter brings to life his recordings. I contend that this combination is necessary to make it a readable and sellable book that conforms to the Western achiever-mentality and offers a not too frightening image of the patient and his condition.Footnote 25 This understanding then is in line with Kathlyn Conway’s remark – with reference to Frank’s ‘chaos narrative’ – that:

Without a speaker or writer to transform the experience into something coherent enough to be communicated, we are left, ironically, with a verbal chaos that fails to communicate the feel of chaos.Footnote 26

The fact that the book is interspersed with photographs depicting Henderson in his condition, adds to the reader’s perception of Henderson’s limited ability and objectified performance – even though ‘he chose to let me photograph him in order to share his life with others’ (99), as the photographer Nancy Andrews acknowledges. Such a reading is supported by Jesse F. Ballenger’s interpretation of these photos as depicting ‘Henderson contending bravely in a world in which everyday objects became strange and threatening’; and Lucy Burke’s observation that Henderson never ‘engages eye contact directly with the camera’.Footnote 27 This latter fact sets our perception of Henderson apart from Judith Fox’s husband, Phillip Toledano’s father, or even Jean Grothé’s mother, whose gaze the son deliberately tries to catch and hold.

Against these considerations, the journal’s title, Partial View, reflects Henderson’s narrative limits. I even suggest that the reader’s perception of Henderson’s helpless disorientation comes closest to the less enabling patient presentations drawn by some caregivers. At the same time, however, it is exactly this limited ability to perform to society’s expectations of an articulate social being that gives Henderson’s reader the ‘full view’ of the adversities faced in the advanced stages of Alzheimer’s disease. Because we begin, speaking with Hughes, Louw and Sabat, to see ‘the person as a situated human being, who engages with the world in a mental and bodily way in agent-like activities’.Footnote 28

Henderson’s book, praised as an important contribution ‘in its refusal to submerge difference and in its avowedly collaborative nature’, clearly demonstrates that the reality of Alzheimer’s disease goes beyond its clinical diagnosis and general societal perception.Footnote 29 It was published at a time, when the societal awareness of the condition began to increase, against the background of the Alzheimer’s Association changing from being a group of passionate volunteers to becoming a professional organisation.Footnote 30 Thomas DeBaggio’s narratives testify to the patient’s perceived and performed individuality.Footnote 31 The journalist and herb grower writes in anticipation of losing his agency and independence, eventually even his dignity, musing to have ‘only a few years before I become a hatstand’ (58), and later on seeing himself ‘rattl[ing] my cage but no one comes to feed me’ (185). He uses metaphors that strip him of his humanity and personhood, and reduce him to an animal, even an inanimate object.

In addition, as I illustrate elsewhere, he employs highly charged images relating to death and dying, frequently referring to his ‘death sentence’ (1), and the disease process as ‘biological war’ (169) and ‘holocaust of my brain’ (184). In this way, he alludes to the impossibility of understanding the remorseless dying of brain cells and of expressing the pain experienced of imminent, relentless loss of self and life. This depiction highlights how cellular loss comes to make loss the all-encompassing medico-scientific metonym for perceived Alzheimer’s disease-related changes. Elaine Scarry classifies biological war and holocaust as torture, and expands on how such experiences lie beyond the victim’s verbalisation abilities. This perspective underscores, all the more, DeBaggio’s speechlessness at the perceived atrocity of his diagnosis.Footnote 32 Reflecting Lawrence Cohen’s perspective, the use of the victim metaphor illuminates how strongly both caregivers (think about Spohr’s use of the victim image) and patients perceive of the passifying nature of the condition. DeBaggio’s imagery pushes this understanding further towards notions of torture from within.

At the same time, DeBaggio claims to ‘stumble through my shrinking vocabulary’ (187), but later writes that: ‘The childhood wounds healed, and my dreams were less haunted by fear. Imagination soon replaced anxiety and I learned early its lonely, lovely powers’ (193). This section, in combining personification, image and enallage with alliterated rhyme and lyrically inspired word order, testifies to DeBaggio’s exceedingly articulate style. In fact, as if directly following Scarry’s insights into the making power of art in the face of illness, DeBaggio presents a thoughtfully crafted narrative that ‘attempt[s] to show the parameters of long- and short-term memory and how Alzheimer’s works to destroy the present and the past [... in] three narrative lines’ (xi). These strands encompass his autobiography, quotations from scientific papers, and carefully constructed aphorisms, highlighted in italics. The latter sections bring out generalised fears surrounding his diagnosis, and are purposefully confirmed by the flash-forwards achieved with the scientific material.

Such astute textual representation led to his book quickly being interpreted as much more than the narrative of someone, who is ‘writing in a panic’ (25): clinical scientists doubted that DeBaggio was actually afflicted by Alzheimer’s disease.Footnote 33 However, research shows that patients in early stages of the condition do retain figurative language.Footnote 34 In this awareness, and in my intentions to reflect on DeBaggio’s narrative articulation in the context of the previously presented accounts, I believe, in comparison to Peter J. Whitehouse’s objections, DeBaggio’s purpose for writing to be more nuanced.

For DeBaggio, who harbours life-long regrets for having given up professional journalism, losing his ability to perform on a high linguistic level equals death. Writing in itself amounts to his holding on to his identity as a healthy human being, which, in turn, makes writing about his entire life a necessity. Living out his eloquence in the earliest days of his diagnosis is his way of giving meaning to his illness. He seizes the opportunity of ‘finally [having] a story of hell to tell’ (1), in which his poignant articulateness runs counter to the anticipated loss of acuity and agency, and provides the means to overcome imminent memory deficits. His text becomes immediate note-taking and his story the legacy for others.

This view is supported by looking at DeBaggio’s second narrative.Footnote 35 Here, his metaphors pertain to the field of his long-lived profession as gardener, and picture events in his more advanced condition. Such observation is in agreement with research suggesting that Alzheimer’s patients show low performance in novel metaphor comprehension.Footnote 36 Illustrating the brittleness of a tree in his garden, he ‘remembered the long, fruitful life of the tree and the way its rich, hard essence returns to the earth as nourishment and provides new promise’. Given that the tree is generally perceived as a metaphor for the circle of life, DeBaggio seemingly hints at his own decreasing abilities. When then continuing with ‘[t]hus does the wealth of a single tree outlive the human memory and become timeless’ (151), he pictures his helpless pain and loss: the actually inanimate object outlives the patient’s powers.

Equally, DeBaggio explicitly acknowledges his family’s strong input in composing especially this second narrative. While still serving different narrative strands, he fails to relate events on a coherent timeline (ruminating instead over his professional backyard gardening), demonstrates memory loss (variously repeating himself) and reveals decreasing attention, as coherent sections become shorter. These very sections describe an elderly man in the third person, just as Konek chooses to depict her father’s disappearance, as if DeBaggio was desperately picturing himself as he cannot be much longer. In particular, he closes on the note that ‘the walker comes to a turning point, he adjusts his cap low on his head, preparing to look into the bright rising sun’ (226). This image runs counter to the sunset that readers would expect, in view of the illness’s prognosis as well as the narrative’s aesthetic indications of decline. It underlines the author-narrator’s need for positive closure in an unspeakable situation. At the same time, it becomes painfully ironic, when read against DeBaggio’s death in February 2011.Footnote 37

With Henderson’s fragmented presentation in mind, I identify in DeBaggio’s first narrative the history professor’s artistically described ‘hypocognitive’ state, whereas DeBaggio’s second text equals the beginning of the actual performance of this state. This very state then emulates, following Arno Geiger’s deliberations, what apparently becomes natural to a ‘hypercognitive’ society. This is in agreement with Jesse F. Ballenger’s observations. Ballenger claims that ‘the person with Alzheimer’s in social constructionist discourse becomes a veritable prophet of the postmodern self’, a notion I take up more fully in Chap. 5. More specifically, Ballenger describes the model of a ‘modern self’ as viewing a person as a self ‘because she knows, in very concrete terms, who, what, and where she is in the world’. A postmodern view of the self, by comparison, considers a person:

a self when he is connected to a world that will accept him no matter how grave his failings, no matter how confused and forgetful he may be about the particulars of who, what and where he is.Footnote 38

The artistic fragmentation in postmodern works is suggestive of the disruptive effects of Alzheimer’s disease on thought, memory and perception. DeBaggio’s work could be seen as a literary rendering of his condition that converts autobiographical truth into authority.Footnote 39 At the same time, the caregiver’s narrative and presentation of disruption then gains meaning beyond that of textually mirrored truth: it builds on the patient’s licence, that is, her or his own choice of presentation.

Supporting this interpretation, Bennett Kravitz’s recent collection of essays that focuses on the representation of disorders that ‘owe their existence to specific economic and cultural conditions of the western world’, considers Alzheimer’s disease to be:

portrayed as a postmodern illness, with important cultural implications, most often because we come to understand that the disease attacks the personality – and destroys it – well before it leaves its toll on the body.Footnote 40

Kravitz highlights that both presence and awareness of Alzheimer’s disease in society continue to increase. But he carries this insight further, when stressing the intricate link between cultural implications and literary explorations of accelerated memory loss.

For his analysis, Kravitz chooses – once more – John Bayley’s Iris: A Memoir of Iris Murdoch, and Jonathan Franzen’s ‘My Father’s Brain’.Footnote 41 He dissects Franzen’s motivation to write as an attempt to come to terms with the father’s dissolution as well as his own mortality, and identifies Iris Murdoch’s travails as Bayley’s core focus. In this way, Kravitz pinpoints two of the central issues caregivers grapple with in their accounts, and further underlines Arno Geiger’s view and presentation of his father’s condition. With Kravitz’s deliberations in mind, I argue that Henderson’s and DeBaggio’s presentations have laid – each in their own way – the cornerstone for individualist presentations by dementia patients; in some ways writing against, to put it in the words of Arthur W. Frank, the ‘cultural dislike for [chaos] stories’.Footnote 42 I presently show that, building on further patient activism and an even further increasing awareness of the condition, the stage is being prepared for truly nonconformist patient presentation. Such presentation accepts and advances, in both form and contents, dementia as a natural part of aging.

Collaborative Writing Meets Societal Norms and Political Intentions

DeBaggio’s choice to present a narrative whose form purposefully witnesses disruption and decline explicitly commands his displaying pain and despair. In addition, he enters a harshly reifying discourse, against which other patients before him fervently rebel. His presentation certainly builds on their portrayals as well as the societally slowly changing perception of the still productive patient – I am thinking about Davis’s continued witnessing, McGowin’s social activism and Henderson’s participation in a drug trial. The journalist and writer, in turn, contributes with an artful narrative that offers An Intimate Look at Life with Alzheimer’s. In this understanding, DeBaggio can remain true to himself. He can reveal his vulnerability, and, thus, maintain identity and authority in weakness, even though these characteristics run counter to convictions professed in most illness narratives, namely that, as Kathlyn Conway puts it, ‘the right attitude brings a cure’.Footnote 43

In the above discussion, I have variously pointed to the problematic relationship between a triumphalist illness presentation and the chronic degenerative nature of dementia: the cognitive decline in dementia is, not only in medico-scientific terms, perceived of as unidirectional in nature. In this respect, I very much agree with Conway that the societally prescribed adherence to a narrative of triumph can be harmful to the patient, especially, when a walk into the sunrise must remain illusory. If, however, an account achieves the combination – presenting a triumphalist storyline, while offering an exploration of the author-narrator’s limits – it may, in formally securing a larger readership, purposefully further necessary sociopolitical discussion. This is what Thomas Graboys’s narrative achieves.Footnote 44

The Harvard cardiologist has Parkinson’s disease. Even though the condition is, first and foremost, perceived as a movement disorder, it can, as in Graboys’s not unusual case, have a strong cognitive component: aggressively progressing Lewy body dementia.Footnote 45 Graboys relies on collaboration with the journalist Peter Zheutlin, because his ‘memory often fails, and trying to organize [his] thoughts is often impossible’ (xx). We could read his, so enabled, highly articulate narrative as efforts to maintain his authority as an accomplished professional, especially as he admits that ‘this book is a logical extension of my medical career’ (xxi). What is more, Graboys reserves, as Conway has identified in triumphalist illness narratives, ‘reflection for the end’, calling the reader never to ‘underestimate the power of positive thinking’ (160).Footnote 46 Chapter headings do not allude to difficulties imposed by his illness. Instead, they suggest deliberations on ‘My Days’ (1), ‘Love and Marriage’ (42), ‘Doctors and Patient’ (59), ‘My Family’ (86) or ‘Friends’ (131) and, lastly, ‘A Life Beyond Illness’ (175), that is, the space ‘between the limbo of illness and the anger and despair it often spawns, […] a better place – a life beyond illness still to be lived’ (177).

Nevertheless, ‘obsessed and fearful about the progression of the disease and always alert for any changes that might signal an advance of the illness’ (151), Graboys talks about his fears directly in the second to last chapter, ‘End Game’ (161). Affected by how ‘both [his] parents suffered from dementia’ (163), Graboys is particularly concerned about having an illness ‘in which physical death is not necessarily the endpoint [… because he] could linger in the shadows of dementia for many years’ (165). Consequently, he openly ponders ethical questions such as:

Who is to say how much dementia is too much to live with? Who will know what really goes on in my head when I lose the ability to communicate? […] how exactly – both medically and legally – does one go about ending a life when the body is intact but the mind is gone? […] How will I know when the time is right? (166–167)

These are issues that, notably, Walter Jens had been discussing at length with the theologian Hans Küng, long before he was diagnosed with dementia.Footnote 47 Mindful of these prominently published insights, Jens and his wife had signed an advanced directive in 2006, two years after the scholar’s diagnosis. But, as Inge Jens confesses (and Graboys anticipates):

Ich weiß es so wenig […] ob es wirklich Todeswünsche sind, wenn er wiederholt und sehr deutlich artikuliert: ‘Ich will nicht mehr’, ‘Ich möchte tot sein’, ‘Bitte, lass mich sterben’.

[I know so little whether they are really wishes to die, when he repeatedly and very clearly articulates: ‘I don’t want any more’, ‘I want to be dead’, ‘Please let me die’.]Footnote 48

These questions are as pressing as they are distressing. In 1990, a patient could, thinking back to Cohen’s argument, bring these questions to the reader only through their dying. Two decades later, patients have gathered pace: Graboys can raise this issue from the vantage point of an authority with the condition; as both doctor and patient. In addition, he follows his understanding, which resonates with Conway’s own deliberations, that:

People always want to read stories of triumph over tragedy. But there is no sugarcoating Parkinson’s and, as the baby boomers age and live longer, more and more of us are succumbing to the disease. There is no silver lining here. There is anger, pain, and frustration at being victimized by a disease that can, to some extent, be managed but cannot be cured. (xviii)

In our increasing appreciation of the patient’s continued self and identity within their condition, we should take particular note of these quandaries, openly deliberate on their ethical tenability – and hear patients out in all their concerns and bring them in relation to the caregivers’ view.

Surely, Graboys’s closing with ‘a search for hope and courage’ (178) could, next to being read as the note of a ‘survivor’, be interpreted as fitting into mainstream conceptualisations of masculinity. The formal layout of this book suggests that I perceive of the caregiver discourse as much more evidently gendered than the patient discourse. Still, we are compelled to ask, whether male as compared to female patients generally portray their condition differently; whether such a difference goes beyond the telling of a purportedly seamless narrative, the artistic exploitation of their condition, or the formal underplaying of their concerns. In Chap. 5, I look at narratives offered by patients who published their stories once the Alzheimer’s patient movement had fully taken off. This gives me the opportunity to investigate more deeply whether the patient discourse is as strictly gendered as the caregiver discourse seems to be, and whether there are forms of dementia life-writing that enable patients to remain true to their narrative abilities, bringing poetics and politics in unison.