Of Wives and Daughters: Stereotypes of the Caring Female?

Abstract

This chapter illustrates how the perceived degree of caregiver burden impacts on the caregiver’s perception and, thus, presentation of the patient. The insights so gained call for stronger socio-economic caregiver support. ‘Of Wives and Daughters’ also aims to separate out conceptual differences between parental and spousal caregiving: shared memories of a life-long relationship colour patient presentation, also because they enable the maintaining of pre-narrative identity; daughters may care mindful of their generational duties, but see their own identity as child at stake. This chapter also argues that the increasing societal awareness of dementia and a related awareness of caregiver needs led to a shift from a stereotypical caregiver- to a more patient-centred approach in caregiving, which is strongly reflected in more recent caregiver accounts.

First the mothers mother and then the mothers are mothered in turn.¹

Escribir este libro ha sido un intento más de acercarme a José Antonio desde su enfermedad […]. Estas páginas son también un tributo a un amor desesperado […]. Otro es el homenaje. Porque quiero que no se olvide la memoria de José […]. También la solidaridad. Porque el dolor compartido es más útil y más llevadero […]. Además, la rebeldía. Porque yo no estoy resignada […]. Y la gratitud. Porque estoy en deuda con José Antonio.

[Writing this book was a further way to stay near José Antonio since his illness (…). These pages are also a tribute to a love without hope (…). Another is homage. Because I do not want José’s memory to be forgotten (…). Also solidarity. Because shared pain is more useful and bearable (…). Furthermore, protest. Because I am not resigned (…). And gratitude. Because I am indebted to José Antonio.]²

In his review on pathographies, John Wiltshire illuminates our understanding of dementia as an illness that disrupts the pathographer’s meaning of life. That he dedicates a third of his study to the analysis of the first two volumes of John Bayley’s Iris Trilogy and Michael Ignatieff’s Scar Tissue adds weight to his conviction that:

diseases such as Alzheimer’s […] may well present the issues of identity which are implicit in all illness experience with particular acuteness. The need to create meaning, prevalent in the pathography in any case, becomes pressing when the patient, the very subject of the narrative, while apparently physically well enough, incarnates the disruption or bafflement of normal meaning-making activity, and seems in fact to be a different ‘self’ or to have lost the self that they were. The challenge of all illness experience may then perhaps be said to confront the pathographer of Alzheimer’s with particular intensity.³

Based on this fundamental insight, Wiltshire then explores the husband’s (Bayley’s) and the son’s (Ignatieff’s narrator’s) difficulties to locate themselves in their relative’s memory loss and unstructured behaviour. For example, with reference to Ignatieff’s narrative, Wiltshire highlights formal aspects that reveal disturbance regarding boundaries of the self, pointing to ‘the work’s problematic status – evidently a memoir, but presented as a novel’. He also dismantles ‘the present tense [as having] the effect of concealing [Bayley’s] activity of recording, [which] is nevertheless the crucial goal towards which the narrator’s energies are bent’.⁴ Echoing Arthur W. Frank’s description of the ‘chaos narrative’, Wiltshire’s analysis asserts that the caregiver’s ways of coping are mostly dependent on, even determined by, the patient, because the caregiver lives and acts in the awareness of the patient’s imminent loss of self.

Wiltshire’s argument seems to state the obvious, because it apparently resonates with what I have described as the cultural mainstream dementia narrative. But it has to be considered in the context of its time of publication. Offering a prompt reflection on Bayley’s account, Wiltshire’s was a much needed intervention on Alzheimer’s disease in early dementia narratives.⁵ Published at a time when caregiver issues only just began to enter wider societal awareness (amongst others, directly related to the publicity of Bayley’s narrative), it perhaps unavoidably neglected potential differences in the spouse’s as compared to the child’s agenda. In addition, the study focused on illness experience more generally, rather than offering a detailed analysis of the ‘recovery of meaning’ in dementia caregiving.

This very recovery of meaning is my particular concern in the present chapter. I am interested in how caregivers deal with the condition and its consequences every day: what are their hands-on experiences, concrete challenges and unmet needs – from not being recognised by their own family member any more to the big question of when to place the patient into professional care. Knowledge so gained will inform policy discussions in its own right. But given that the sharing of their experiences by itself – their writing, drawing, photographing – is central to the caregivers’ coping strategies, I particularly reflect on how they actually articulate their daily encounter with the patient: how do they interpret the illness’s impact on their mutual relationship, and what images do they choose when writing about their family member. Such deliberations necessarily touch on issues as diverse as the ethics of patient presentation, the implications of the choice of narrative form(s) and the possibilities of varied artistic expression, with these issues requiring added reflection against the background of the increasing societal awareness of the condition over the last twenty years. Given then that caregiving continues to be seen as a predominantly female activity (despite a considerable shift within the 1990s that sees women’s and men’s involvement in caregiving converging), I initially, in this chapter, look at how daughters as compared to wives offer their stories.⁶

In particular, I illustrate that the adult child’s choice of how she mythologises her parent’s illness influences the child’s own identity perception and, closely related, her presentation of the parent’s personality. In my comparison of narratives by the writer Annie Ernaux and the women’s studies scholar Carol Wolfe Konek, I argue that recreating the parent’s pre-illness self has the positive effect of helping to preserve the own filial identity. However, this approach leaves no space for the parent’s continued identity within the condition. Looking for personal growth in the confrontation with the parent’s illness experience, by comparison, grants the parent the continued identity of a nurturing and teaching individual.

In the latter part of the chapter, I analyse how the history of a couple’s life-long, shared relationship impacts on how a spouse faces her husband’s illness. My reading of the narratives by Betty Baker Spohr, Judith Fox and Rachel Hadas also illustrates how creativity ‘in an area of life where choice and creativity are almost wholly denied’ structures the caregivers’ understanding of their loss and the patient’s increasing passivity through dementia.⁷ Published across a time span of fifteen years, the aesthetic choices of a caricaturist, a photographer and a poet reflect a shifting conceptualisation of care away from caregiver- to patient-centred approaches. As observed in the context of filial accounts, these spousal tales also suggest that, where caregivers manage to perceive continuity, the patient’s identity is preserved and the carer’s burden appears less pronounced. Differently put, the female caregiver is exposed to manifold ideological prejudices. These include expected hands-on daily care, personal experience of loss, struggle with personal identity issues and also exposure to criticism for her so influenced narrative choices. My closing reflection on Reeve Lindbergh’s narrative about her mother’s dementia suggests that a patient can be considered active, and dementia may obtain added meaning, more easily in a ‘care-free’ environment whose wider cultural implications I then further explore in Chap. 3.

The Lost Identity: Alzheimer’s Disease, Adult Children and the Past

In a small volume of notes taken after visits to the nursing home, Annie Ernaux chronicles the final years of her mother’s Alzheimer’s disease.⁸ Its most prominent feature is Ernaux’s comparison of her mother to a child which becomes more and more explicit over time. Initially, she associates her mother’s words with those ‘I would use when I was a child’ (15), later identifying her own gestures as those directed towards ‘a child who is sleeping’ (24), to approach the comparison of the mother to a ‘frightened woman clinging to me like a child’ (37). These periphrases, eventually, give way to the acceptance of their core truth: ‘I help her to take off her panties and to put them back on. A child. Period’ (53). Considering a diary as a place in which to contemplate one’s self, Ernaux comes to ‘learn some fundamental truth about myself’ (29), namely, that, even though her mother now ‘is my little girl [...] I CANNOT be her mother’ (23; emphasis original).⁹ Ernaux perceives the mother’s condition and lost awareness of being mother as ‘pushing me toward death’ (63). In addition, she interprets the mother’s cognitive changes as the accelerator of her aging and dying, which, in turn, threaten her identity as daughter.¹⁰

In this respect, the persistence and continuity of every diary entry defer the end of Ernaux’s chronicling the mother’s biography and her actual death, even though the literal plotting of her mother’s decline necessarily brings her end ever nearer.¹¹ While this discrepancy strongly highlights Ernaux’s emotional urgency, she nonetheless only published these fragments eleven years after her mother’s death, as if to confirm our understanding of the privacy of such notes. In addition, the sequential presentation of differently accentuated accounts convincingly epitomises how continued caregiving may change the caregiver’s attitude. French news presenter Françoise Laborde, for example, first relates personal feelings regarding her abrupt encounter with the mother’s Alzheimer’s disease, only later offering a more detached medico-clinical testimony.¹² Similarly, Mary Wilhoit kept a blog reporting the caring for her mother, which she only later published as a book. Asserting that a book makes her experiences more widely accessible, her writing as well as publication strategy nevertheless suggest she may be less sensitive to ethical issues: she reduces the patient to ‘the mom […] a mindless automaton roaming around’ and posts to the blog while her mother is still alive.¹³

Ernaux’s notes cannot, as Hawkins would have it, ‘create a meaningful death’, because her mother’s style of dying did not reflect her actual personality.¹⁴ This is perhaps a further reason why Ernaux initially composed, shortly after her mother’s death, a narrative about her mother’s life before dementia.¹⁵ Its title, A Woman’s Story, suggests detachment and distance, alerting the reader to the writer’s search for form, in that ‘the private diary is a practice [that] does not reflect the life as an autobiographical narrative would do’.¹⁶ Ernaux follows the aspiration to be ‘only the archivist’ (15), and her use of bullet points reads as the author-narrator’s acknowledgement of her limited knowledge of the mother’s past. It is worth noting that the image of the archivist features in other adult-child life-writing, conveying feelings of loss in relation to the parent’s own memory and life history, to which I return more fully in Chap. 3. Giovanna Venturino, for example, writes that:

in modo inversamente proporzionale alla progressiva perdita di ricordi e conoscenze, la mia mamma estende sempre più il suo ‘mare di nulla’ dal quale, ogni tanto, come tristi relitti di un tempo ormai inesorabilmente andato, riaffiorano pezzi di ciò che è stata; e come uno scrupoloso, attento studioso, sono lì, pronta a raccoglierli […].

[In a way inversely proportional to the progressive loss of memories and knowledge, my mother increasingly expands her ‘sea of nothingness’, from which, every now and then, re-emerge, like sad relics of a time by now inescapably lost, pieces of all that she has been; and like a scrupulous and attentive scholar I am there, ready to collect them (…).]¹⁷

The Italian primary school teacher’s use of the archivist image suggests her perceiving of the mother’s condition as one of a living death – both for its connection to the image of the ‘sea of nothingness’ and in its comparison to Ernaux’s own use of the image. The French writer employs it to depict her activities after the mother’s actual death. Specifically, Ernaux narrates, after having opened with the mother’s death, the timeline of her life and dying. This construction closes the narrative circle, and mirrors – acknowledging the circle of life – the beginning of the daughter’s healing. Ernaux, eventually, overcomes her clinging to the professed objectivity, ‘to cry because she was my mother, the same woman I had known in my childhood’ (80). These feelings, in turn, strongly resemble the emotional urgency that speaks from her original diary.

Ernaux is particularly aware of the intricate relationship between her act of writing – as a working through of her own past as daughter of a healthy mother and (much less) the years of the mother’s illness – and her written words as a recreation of identity. In fact, the writer makes her narrative the counterstatement to what the disease did to her mother, as it ‘puts my mother’s illusory presence before her real absence’ (88). It restores the mother to her original image, before dementia. At the same time, this act makes herself daughter again – a reading encouraged by insight that the female search for identity occurs ‘through relation to the chosen other’.¹⁸ In this awareness, it is most appropriate for Ernaux to publish the private notes, because they reflect a constituent part of her suffering.

The title of Carol Wolfe Konek’s account Daddyboy similarly alerts the reader to the daughter’s perception of the father’s return to childhood.¹⁹ But it also suggests how Konek, in distinction to Ernaux, continues to see the grown-up father through what she understands as childlike behaviour. This is particularly true, because the expression belongs to actual childhood conversations between ‘Daddy’s girl’ and ‘Daddyboy’. The use of this metaphoric oxymoron is particularly revealing compared to its usage in Nucci A. Rota’s narrative of her mother’s Alzheimer’s disease. In affirming that, ‘[s]cendendo tutti i gradini della malattia è diventata quella che io ora chiamo la bimbamamma’ [in descending all steps of the illness, she has become what I now call mommy girl], Rota professes the perception of her mother’s ‘other’ personality through illness.²⁰ This reading underlines how Konek sees her father as a continued personality.

Konek carries the title’s antithetic message on a narrative level, when portraying the disruptive power of Alzheimer’s disease by connecting different storylines, whose alternations do not follow a systematic pattern. The story of her growing up and being shaped by the confrontation with her father is interwoven with the story of her parent’s progressing condition, as well as Konek’s present-day dreams, her childhood thoughts and sections on the fear of losing her own self-awareness. Nevertheless, these storylines follow their individual timelines, suggesting that the narrator surrenders to her urgent need to maintain a sense of continuity that counterbalances her sense of biographical disruption.²¹ This disruption is carried forward, as the patient’s active presence decreases throughout the text, its second half reporting about him only from the distance of the third person, which mirrors involution and anticipates his death.

As Konek strings together snippets of past and present, her narrative resembles a series of photographs, each no longer than half a page told in the present tense. The father’s ‘gift to his family is history’ (13), as he recorded memories through photography, a form which creates continuity, since Konek takes on the father’s memory-making role. Just as the camera shoots one-moment-in-time images, she perceives of Alzheimer’s disease itself as a condition that leaves room for no more than the current moment, when describing her father’s attention, for example, as a ‘flicker of knowing’ (137). In this context, it is worth noting that Linda Grant’s Remind Me Who I Am, Again similarly has the purpose of maintaining the mother’s memory, as it describes her dementia which is caused by transient ischemic attacks, while recording the family’s past, also in assembling photographs.²²

In comparison to Ernaux, Konek continues to perceive of her ill parent as teacher, claiming that ‘[w]hen he had given all he could give consciously, he still gave us an example of endurance, of suffering, of awful mortality’ (161). The very notion of continuity and closure reaches full circle, when, in her concluding lines, the daughter completely identifies herself with the father: ‘I adored him. I worshiped him. I respected him. I judged him. I hated him. I accepted him. I pitied him. I released him. I become him’ (161). This oscillating parallelism summarises the process and boon of Konek’s working through the life-long father–daughter confrontation in the light of the father’s illness. The negotiation with his condition becomes her opportunity for personal growth; an experience with lasting identity-shaping impact – as her choice to end the narrative with this statement in the present tense signals.

Read from this perspective, the informative wider societal purpose of Konek’s work gains further meaning as she becomes the teacher herself. She lets us glimpse into support group meetings or scientific conferences, where the impression of medico-scientific and healthcare discourses that are insufficiently aware of caregiver burden prevails. As such, Konek’s choice to report conversations with her mother – the primary caregiver of Konek’s father – in direct speech furthers, in its perceived directness, the reader’s appreciation of what society truly needs then and now: a discussion on the caregiver’s pain and distress as well as the ethical considerations relating to end-of-life quality and care. Of course, the literalness of the words spoken must be questioned. But Konek would have been committed to maintaining fidelity to the gist of the conversations with her mother. As Sidonie Smith and Julia Watson point out, autobiographical narration ‘cannot be read solely as either factual truth or simple facts. As an intersubjective mode, it lies outside a logical or juridical model of truth and falsehood’.²³ What is more, Barbara Ehrenreich appraises Konek’s narrative as ‘a powerful lesson about what it means to be human’ on the book cover; the journalist’s verdict being all the more meaningful in the light of her criticising the culture of survivor literature that leaves hardly any room for less triumphalist types of illness narrative.²⁴

While Ernaux focuses predominantly on the daughter’s self-survival in view of losing the parent to illness and death, Konek draws strong continuity within and beyond the parent’s illness, likely in reverential love for the nurturing father.²⁵ Nonetheless, Konek is prepared to send the parent to a nursing home, with this decision often being supported by the societal concept of the career-oriented young mother. Andrea Gillies, for example, emphasises, as quoted above, generational duties, but eventually places her mother-in-law – conscientious of neglecting her own close family – in a care home. Konek’s mother, in contrast, and spouses more generally consider caregiving as their obligation.²⁶ I, thus, turn to analysing three spousal accounts, whose different creative approaches per se suggest scope for improved, diversified caregiver support. They also highlight how a shared pre-illness experience (next to the parent–child relationship) structures the caregiver’s perception of continuity or the loss thereof.

Times Are Changing: ‘Mothers’ and Lovers

Betty Baker Spohr’s picture book traces her husband Hank’s decline from diagnosis to death.²⁷ Every double page displays a pencil drawing and three to four paragraphs of related text that illustrates Spohr’s confrontation with the illness in very short sentences, which hardly extend to a subordinate clause. Such a stylistic choice enhances the reader’s impression that Spohr truly experiences her situation as an inescapable ‘verdict’ (1) – a metaphor that positions Spohr’s illness experience close to the helplessness of Kafkaesque characters: it pictures her as being innocently, even arbitrarily, exposed to Alzheimer’s disease, because ‘[t]he doctor’s explanation leaves me in shock. There’s no cure. There’s no really effective medical help available. It’s downhill all the way’ (2).²⁸ The corresponding drawing shows the doctor in the dominant position: his big hand rests on Spohr’s shoulder in the foreground of the drawing, while Hank himself – depicted with less attention to detail – is looking absentminded in the background (3).²⁹ This text–picture portrayal suggests that Spohr perceives of the doctor as exercising his authority from a professional distance and with a mentality removed from the patient’s as much as the caregiver’s needs.³⁰

Spohr asserts that her writing and drawing ‘turned out to be therapy for me’ (iv) in the confrontation with feelings of:

resentment that this dire thing should attack Hank […]; self-pity as I began to have less and less freedom; guilt, fearing I was not doing enough […]; embarrassment when he exhibited erratic, strange behavior; anger and impatience when he became impossibly stubborn [...]. (iii)

But her actual coping is rooted in her adopting ‘an impersonal approach to my caregiving’ (iv), which is reflected in her ‘points to remember’ that conclude each chapter. These points, for example, advise the reader to ‘protect furniture and rugs, as if a baby were in the house’ (200). As such, Spohr’s detachment strategy goes hand in hand with her providing a narrative of largely informative nature that was, at the time of Hank’s diagnosis around 1984, desperately needed: the only available manual was Nancy L. Mace’s and Peter V. Rabins’s The 36-Hour Day.³¹

Of course, in a first instance, the child metaphor saves her (as well as Ernaux) from writing about her husband’s eating or toilet habits in the advanced stages of the illness. But while metaphors are part of explanatory models that ‘enable sick persons to order, communicate, and thereby symbolically control symptoms’, they are also a mode of thought and, consequentially, action.³² In fact, Spohr identifies ‘the man I married’, to whom she dedicates her book, as ‘slowly disappear[ing] as Alzheimer’s disease inevitably took its toll’ (iii). Following this detachment, she can draw even more disabling similes ethically, for example, picturing herself as putting a safe return bracelet around Hank’s arm, while their little dog triumphantly lifts its paw (28), or showing Hank, next to their dog, confined by a baby-gate (104), as if to say that the patient needs more control and surveillance than the family pet. That Hank is usually depicted as slightly stooping further suggests Spohr’s perception of his helpless inferiority.

Against this background, the most revealing statement remains Spohr’s final confession that, suddenly, after Hank’s death, her life is ‘empty, without focus. For ten long years Hank has been the center of all my thoughts and activities. His illness has controlled every waking and sleeping hour’ (208). Spohr’s caring for Hank is her actual coping strategy that helps her not only to deflect the pain but also the awareness and anxiety about losing the husband himself; personal feelings for him cannot rise up, as he is being reduced to the mere origin of her caring strategies.³³

Reflecting on Spohr’s need to provide testimony and offer advice to fellow caregivers makes one wonder how caregivers write about their experience – and, hence, portray their spouse – twenty years later. This question is pertinent, given how societal dementia awareness as well as caregiving approaches have changed since the 1990s. A recent caregiver manual, for example, summarises:

studies have progressed from a focus […] on the burdens of caring to research which focuses more on the interrelationship underpinning care giving and receiving […], and more recently […] where these interrelationships become the focal point for understanding the dynamics of living with dementia.³⁴

Judith Fox’s photo book illustrates such an altered caregiver attitude, as her work of art is, in witnessing her passion for photography and the continuing love for her husband Ed, much more autobiographical (rather than guide-like) in nature.³⁵ This insight is most clearly transported in a photo near the centre of the book (76). The couple’s hands are portrayed, their wedding rings visible. As her fingers rest on his slightly blurred hand, which in itself signals Fox’s metaphorical conception of Ed’s decreasing presence, Fox pictures herself as the dominant part of the couple. But at the same time, this depiction tells the onlooker, ‘[i]n the midst of a devastating disease, [of] still lovely moments, laughs, hands held and bodies touched, and the precious and fragile gift of time together’ (77).

Fox conveys a much more profound truth of the illness, because she documents, continuously changing her perspective, their life together against the background of Ed’s gradual decline. A photo of Ed’s naked back, cast into the striped shadow of the window blinds, conveys spells of insight and times of despair (49); a photo of Ed asleep taken from a distorting angle (suggestive of Andrea Mantegna’s ‘The Dead Christ’), hints at his increased vulnerability (90); a photo of Ed walking away from the photographer in the hallway of the house, implies his increasing disorientation (112); a photo of Ed taken from behind him and at a far distance in a hotel where the couple stayed, leaves the onlooker with the impression of the mere shadow of the patient (120). This series enhances the onlooker’s understanding that the caregiver conceptualises the patient as ‘fading away, becoming less and less capable of interacting with the world and with others in the ways he used to’.³⁶ In accord with these images that are so full of meaning – and in agreement with neurological insights regarding plateau phases in the illness trajectory – Fox writes:

Once Ed and I started living with Alzheimer’s, we began a trip down a never-ending staircase. Here and there we’ve found a platform and rested for a while. Then there was another step down. And another. Right now Ed and I are tumbling feet-over-head. No platforms in sight. A nightmare. (74)³⁷

Like her photos, this journey language picks up on the general perception of Alzheimer’s as leading to decline and darkness, and concomitantly expresses Fox’s speechlessness in view of the disease process. But simultaneously, Fox pictures, in comparison to Spohr, the couple as being together in this descent, just as her work of art emphasises the close relationship between patient and caregiver, husband and wife, photo and text. The photos are able to tell the patient’s story independently, while the text portrays – in addition to Fox’s actual choice of perspective and sequence – the caregiver’s awareness that:

When we choose to help ease the life and death of an Alzheimer’s sufferer, we are taking on a difficult, demanding, and heartbreaking role. And, yes, it’s also a privilege. (80)

I believe this intricate combination of Fox being photographer, onlooker and carer as well as suffering partner all at the same time to be at the root of our perception that her work is devoid of any voyeurism; that, in fact, the beauty of these photos does not drain attention from their sobering subject.³⁸

Undoubtedly, Fox’s work does carry all this meaning, because it is deciphered against the background of twenty years of thoroughly informative caregiver writing; amongst others Konek’s and Spohr’s narratives. Indeed, her documentation gains additional connotations through the photos she does not show. She genuinely focuses on the coherent portraiture of the illness’s impact on the couple’s emotional as well as bodily relationship. This view is affirmed in Fox’s concluding statement: ‘Photographing the man I love is an intimate process’ (124). Her work of art becomes a declaration of love to Ed, as is its title, since ‘[f]rom the moment we were married, he and I told each other daily, “I still do”’ (125). Against this background, Fox’s book essentially creates the continuation of the couple’s life together beyond Ed’s illness, because the photos will continue to speak to the onlooker Fox as they did to her as a photographer at the time. Fox records Ed in his living with the illness, in his as well as her own suffering, affirming his personhood, continuing identity and self in Alzheimer’s disease.

Confirming Elaine Scarry’s discernment of the making power of art in the face of illness and pain, both Spohr and Fox find encouragement and strength in falling back on their passion for creative art work.³⁹ Rachel Hadas’s recent memoir about her husband’s dementia, in turn, offers precious insights into the support she gained from creative writing.⁴⁰ A closer scrutiny of the English scholar and poet’s text also reveals that concepts of passivity – as they dominate Spohr’s account, but are less prominent in Fox’s book – do not categorically relate to a specific phase in dementia life-writing. They also emerge from a combination of the caregiver’s aesthetic choices and the focus of her telling based on pre-illness experiences.

Having shared life-long intellectual companionship with the composer and professor of music, George Edwards, Hadas perceives of the condition as imposing increasing loneliness and isolation, writing that ‘[t]he pregnant silence of thinking […] that hums with energy’ (1) changes into ‘[t]he silence that came increasingly to reign in our house as George gradually changed from one person into another’ (4). As such, her experience centres, as the narrative’s title, Strange Relation, suggests, on the estrangement from, and the loss of, her partner in life, and, thus, the implications of being confronted with Alzheimer’s disease in her own midlife.⁴¹ Consequently, Hadas is less concerned with an illustration of George Edwards’s pre-illness life or her hands-on caregiving experience. Rather, her telling expands on crossing her ‘own private Rubicon’ (75), that is, to call for household help, and, later, place her spouse into a nursing home. Her text makes this emotional turmoil formally clear. George Edwards as an active partner in marriage appears absent; instead he becomes the reason for his wife’s deliberations.

While her narrative stringently moves from diagnosis to institutionalised care, the entire central third of the text reminisces on the year 2007, the year before Hadas places Edwards into a care home. At its very centre, Hadas reflects on her poem ‘The spell’ (99), which ‘focuses on one striking aspect of cognitive decline’ (100), and, again, carves out the illness-imposed silence, as ‘Your husband will remain /But scarcely ever utter one more word […]. Within that garden henceforth, on each road, /Yours is the bearing of his lonely load’ (100). Pondering her poem in Strange Relation, Hadas explains that she experiences the condition’s cognitive aspects as most distressing, since, ‘[w]hen the person you’re caring for is suffering from an ailment that affects cognition, there’s twice as much to remember, to know, to keep track of’ (101). Therefore, she concludes: ‘The lonely load is he. Is his. Is mine’ (102).

Like Ernaux, Hadas perceives of herself as ‘the sole custodian of the fragile freight of George’s past’ (14), and her husband’s ‘archivist’ (151) in the awareness of the illness-imposed ‘open-endedness, this lack of closure’ (168). Yet, this understanding helps her to approach the painful but necessary decision to place her husband into care. She retrospectively works through this choice reflecting on Richard Goodkin’s description of ‘the tragic middle’:

Tragedy tells us, as no other genre does, that even though not everything depends on us, even though we are acted on and constrained by forces beyond our control, nonetheless we must make unmakable choices. […] The tragic middle recognizes not only that, as has been said of the tragic hero, you can’t have it both ways, but also that you must have it both ways. (142)

Hadas’s confession that through her personal experience of illness she ‘came to understand tragedy as I never had before: from the inside’ (24), acutely pinpoints how one’s world of experience changes one’s perception and, thus, representation of that very experience.⁴²

In offering further readings of illness narratives within her own narrative of illness, in confessing that ‘I found that poems were among my most faithful friends’ (32), Hadas’s text becomes yet another testament to how ‘Readings in the Kingdom of Illness’ (30) can become a haven of support and rescue. In this understanding, Hadas subsequently reminisces on her work in an article published in The Lancet:

If silence was the enemy, literature was my best friend. No matter how lonely, frightened, confused, or angry I felt, some writer had captured the sensation […]. I rediscovered what every writing teacher knows, that writing what you remember helps you to remember more. […] the more I wrote, the more I remembered and understood. (ix–x)⁴³

Her story testifies to the teaching powers of narratives and particularly emphasises, next to the personal, the political powers of narrative to participate in, and shape the mainstream dementia discourse.

Perceived Caregiver Burden and Patient Identity Condition Each Other

A core theme running through almost all of the above narratives is that the patient is compared to, or even presented as a child. Some adult children write, like Ernaux in her notes, under the spell of the daily parent-patient encounter. Others, like Konek, live at a long distance from their parent’s home, seeing the patient only infrequently. Yet, their perception of the parent’s childlikeness forms under the impression of a dementia discourse that continued, throughout the 1990s, to belong to the medico-scientific domain. This discourse particularly centred on caregiver burden, and identified similarities of the patient’s to the child’s brain organisation and behaviour.⁴⁴ It is assertions like these that Spohr’s advice to ‘expect regression to “second childhood”’ (144) strongly resonates with.

We certainly could interpret Spohr’s accepting the role of the accomplished coordinator as her continuing the husband’s identity.⁴⁵ This perspective would put her coping strategy on one level with those pursued by adult-child caregivers who seek continuity in their living up to the role of the parenting child and, in this way, substitute the parent. Such strategies may prove useful in the short term, but leave the caregiver confronted with identity struggles after their family member’s death, as both Spohr’s narrative and Ernaux’s notes testify. In addition, such patient conceptualisation may quickly structure how patients and their care are confronted. An annotated bibliography on Literature and Gerontology published in the mid-1990s illustrates my concern. While such work offers an overview on less well-known narratives related to mental health and dementia in old age, the list of relevant narratives is – with a view to the bibliography’s publication date – rather short, and omits a clear distinction between fictional and non-fictional texts. Yet, the authors emphasise patients as being ‘shown as repulsive to those attending to them [… who] often feel embarrassed by their bizarre, unpredictable behaviors’.⁴⁶

Fox, in comparison, writes against the background of a changing conceptualisation of dementia care a decade later, and was, given that she acknowledges Lisa Snyder’s work, certainly influenced by literature on the biopsychosocial approach to dementia and caregiving.⁴⁷ In exploring the nature of personal identity through the prism of philosophy and psychiatry, such research identifies, as highlighted in the introduction, patients as able to maintain their feelings of self-worth. That Hadas’s patient image, by comparison, lingers on concepts of loss, silence and absence at a time when these whole-person approaches had already made headway underlines how shared pre-illness experience structures illness and patient perception. Ernaux’s experience is structured by the loss of the nurturing mother, Hadas’s by the loss of intellectual companionship. Consequently, their presentations appear dominated by concepts of the patient’s passivity.

In this context, an analysis of allusion to performance within the narratives discussed above proves insightful especially with a view to their choice of humorous presentation. In my undergraduate teaching, the two drawings by Spohr referred to above elicited most animated discussion, particularly, with respect to the ethicality of such presentation. Many students perceived of their humour as funny at the expense of the patient – even though it might help Spohr’s survival, since deflecting stress from the daily strain of caregiving. Still, such presentation is in stark contrast to Fox’s portrayal of Ed as keeping (as the patient himself) his humour and wit even in the face of disease progression. Offering a photograph of Ed looking into the mirror, pulling a face and sticking his tongue out (53), Fox asserts:

Laughter allows Ed to feel normal and it deflects attention away from the fact that he might not be able to answer the question, recall the name, or find his way to the front door. (52)

Pushing an analysis of performance in dementia life-writing further suggests, how strongly the freedom from caregiving – or, more generally speaking, the caregiver’s perceived situation (thinking about the lover Fox as compared to the ‘mother’ Spohr and the abandoned companions Hadas and Margarita Retuerto Buades, whom I cite above) – both builds on and prepares for the perception of the patient’s condition, behaviour and identity. In fact, we might perceive of Fox’s patient conceptualisation as more active because of Ed’s lived presence in the photographs, and because we look at these pictures in the context of Hadas’s choice to let her account be structured by George’s increasing cognitive absence. I want to illustrate this important relationship further by briefly looking at Reeve Lindbergh’s memoir of her mother.⁴⁸ One is immediately touched by Lindbergh’s lyrical account and could read it as a poetic rendering of her mother’s dementia. Yet, I particularly want to focus on Lindbergh’s attention to her mother’s behaviour and related choice of presentation.

After a series of strokes several years earlier, Lindbergh’s mother is left mentally confused and, as the narrative’s title, No More Words, anticipates, unable to speak.⁴⁹ Reeve Lindbergh suffers ‘in silence’, not ‘know[ing] what to do with her [mother]. It is the silence. […] I am bewildered, confused, absolutely at sea, in my mother’s silence’ (14). She shares this experience with her friend Hadas, and particularly empathises with Hadas being confronted with George Edwards’s ‘living absence and an almost total silence’.⁵⁰ In her own narrative, Lindbergh describes her suffering in the confrontation with silence as follows:

To lose such an important listener in life is like losing my shadow. With no shadow, does a person truly exist under the sun? With no listener, does a person really have a voice? Silence means so many things to human beings. Some of them are unbearable. (85)

To fill this void – and certainly also in the need to keep the parent’s memory – Lindbergh quotes the mother’s work throughout her memoir. At the same time, she comes to the conclusion that:

Language is limited at the best of times. What really goes on in this world is beyond words, and the truth of it, whatever that is, comes through to us in mystery, always taking its own sweet time. (135)

In this conviction, Lindbergh places noticeable emphasis on the mother’s remaining actions, reminiscent of Konek’s attempts at seeing the still teaching father. Additionally, she stresses her own desire to interpret the mother’s behaviour in particularly active terms, even though the couple spends most evenings sitting together in silence. On one such evening, the former pilot takes her daughter by surprise, while holding on to a cuddly toy:

Holding it, she watched me for a while, then put down the mouse and picked up a glass of water. She turned the glass over and poured it on my knee. I don’t care what they say about short-term memory loss. She’s been planning that for a week. (108; emphasis original)

In reference to an earlier scene, where her mother poured grapefruit juice from a glass into a vase with lilies, Lindbergh tells us that she tries to interpret her mother’s behaviour as purposeful action, identifying streams of thought. Thus, Lindbergh concludes: ‘Liquids are for pouring. So she poured’ (109). In the same way, the daughter reflects humorously on how her mother apparently objects to her toes being treated by the podiatrist, who eventually gives her a catalogue, with which the mother bops him on the head, but only:

when he was working on a particularly hard or tenacious nail. The gesture was almost regal. I dub thee Sir Arthur, Knight of the Protested Pedicure. He clipped, she bopped, I watched. (134; emphasis original)

This final parallelism – reduced to subject and predicate just like the short factual statement above – suggests Lindbergh’s role as that of an onlooker in her mother’s continued activity, which, however, is reduced to minimal actions. Both scenes leave us, especially in the light of Lindbergh’s jokey commentary, with the impression of the mother’s happily tolerated, even appreciated, childlike mischievousness. In fact, Lindbergh’s allusions to buying an ‘anthology of poems and prayers for children’ (82) or a book ‘in the format of a coloring book for children’ (127) for her mother let us appreciate a much more relaxed use of the child metaphor than that seen in Ernaux’s or Spohr’s account.

Humour in adult-child caregivers has been identified as being closely related to the caregiver’s general perspective on life as well as the parent’s own nature.⁵¹ This explanation certainly fits Reeve Lindbergh’s situation, when considering the strong Buddhist imprint in the mother’s actual caregiver environment. Yet, I believe that Lindbergh is particularly able to picture her mother’s condition with a pinch of laid-back rather than black humour (as Spohr’s seems to remain), since she is writing from a ‘care-free’ distance:

Mother does not live in my house, but in a smaller one […], only a hundred yards away. I visit her in the evenings, but full-time caregivers keep her company twenty-four hours a day. They help her eat and dress, and tend to her bathing and personal care. (14)

But even when taking into account this caregiving relief, I am aware that I here offer a rather sympathetic reading of Lindbergh’s attempts to keep her mother alive and active, and am wondering why I see Lindbergh’s alluding to perceiving of her mother as a child with such serenity. Am I interpreting her rendering in much more positive terms, because I have her open acknowledgement ‘that Mother is very fortunate to be able to afford such care, and that I am very fortunate to have her near – but not in – my home’ (14)? Given that the issue of gender is part of how we read a narrative, I wonder whether we absorb Fox’s photo book, Lindbergh’s memoir or even Spohr’s account – which is, after all, written in the emotional turmoil of losing the beloved husband – with deeper involvement as they are told by a woman, with whom I, as a gendered reader, might in addition identify more fluidly.

I first became invested in this question, when studying fictional accounts centred on dementia caregiving, and felt particularly drawn into deliberations on such predetermined reading where author and narrator, alias main protagonist, had the same sex.⁵² I believe this question to be particularly pressing, given that the female perception of their ailing relative – and, thus, their choice of illness and patient presentation – may significantly differ from male approaches, not least since men are rarely primary caregivers and, additionally, rather define themselves autonomously. In addition, the number of female narratives significantly exceeds that of male accounts, which may be rooted in the fact that men find it difficult to maintain their sense of masculinity in the feminine role of caregiving or indeed after having published an account of caregiving.⁵³ These caveats suggest that the female author-narrator may be exposed to a range of ideological preconceptions that are enhanced by the caregiving experience and its representation. Mindful of these circumstances, I want to turn, in the next chapter, to several narratives written by male caregivers.

Having identified scope for healthcare and economic changes in this first chapter – an alleviation of caregiver burden will impact on patient identity perception, even though a life-long shared experience will enhance feelings of loss and passivity – I am now turning to sociocultural implications of altered caregiver circumstances. In juxtaposing the male to the female narrative in the following chapter, I am looking for notions of the patient and condition that might only come to the fore, once the caregiver-narrator is able to write from a distanced breathing space, removed from the imminent day-to-day impression and burden of caregiving – as possibly suggested in Lindbergh’s ‘care-free’ descriptions. This means, I am less interested in the difference between the male and female experience of looking after a family member with dementia as such. Rather, this approach will illustrate in more detail the enormous emotional strain on children who have to care for a parent who is no longer their parent. It will also show that the specific meaning of memory is embedded in a particular personal background and upbringing as well as a wider cultural and historical tradition. Building on insights gained so far, such meanings will only change – losing connotations of stigma and fear – with a shift in caregiver burden.