key: cord-1027976-0kh8niul authors: Stončikaitė, Ieva title: Care, dementia, and the fourth age in Erica Jong’s later work date: 2021-05-18 journal: Gerontologist DOI: 10.1093/geront/gnab066 sha: bbc0408768bdbbcf8ef2b90faf3100fbd588730d doc_id: 1027976 cord_uid: 0kh8niul BACKGROUND AND OBJECTIVES: This article addresses the representations of dementia and caregiving in the fourth age as depicted in Erica Jong’s later-life work. It shows how the experience of parental care leads to the discovery of new ways of human interaction and expressions of personhood. RESEARCH DESIGN AND METHODS: Framed within literary-cultural age studies, the article shows how humanities-based inquiry can illuminate important aspects of aging and care of the oldest old, which are significant and revealing, but often hidden under the dark shadow of dementia. RESULTS: Newly discovered ways of communication challenge the notion of the loss of agency as they demonstrate that the body itself has the power of creative and intentional capacities and self-expression. DISCUSSION AND IMPLICATIONS: Care-related narratives offer new insights into aging, dementia and subjectivity that can help pursue a better analysis of the ‘deep’ old age, strengthen collective solidary and manage increasing ageism, especially pronounced during the Covid-19 pandemic. This study employs cultural-literary gerontology as the main framework to address the issue of caring for the oldest old whose agedness and both physical and mental frailty are associated with declining cognitive impairment, as represented in contemporary m w E J " (1942) w . f y f u u " Fear of Dying (2015) , which deserves particular attention because, in contrast to her previous writings, it is primarily about aging, losses and death. This coming-of-age story depicts a 60-year-old actress, Vanessa Wonderman, w f w u f y u b " m the fear of her own aging, the loss of youthful looks and rationality, and mortality. With her honesty and witty humor, Jong brings her readers closer to age-related challenges, and questions the meanings of life, death and growing older in contemporary society. Although, in the novel, old age is accompanied by pain, dependency, bodily decay and, ultimately, deaths, Vanessa also discovers that the perplexing experience of aging and carework, as well as the proximity of death, can yield remarkable insights about laterlife stages and make the fictional character less fearful of aging and the end of life. J " novel also examines parent narratives that elicit different subjectivities, and give voice to the often-silenced social and psychological realities of human aging. It tackles the problem of conveying the meaning of personhood in old age when faced with gradual mental decline, which is especially difficult to capture and represent (Barry & V b 2020) . T u " w very often autobiographical in nature, also contributes to a growth of literary texts that only recently are beginning to portray older people living with dementia in contrast to the many accounts that witness dying of our beloved ones. Finally, this study aims to demonstrate how humanities-based inquiry can illuminate important aspects of the fourth age and caregiving experiences that are both challenging and revealing, but often underappreciated and hidden under the dark w f m " " . A c c e p t e d M a n u s c r i p t 4 There is a substantial body of theory on the so-called third age, closely related to the retirement age of the now aging baby-boom generation; yet, the last stage in life, commonly known as the fourth age, has not been the object of so much attention and Higgs & Gilleard, 2021). This phase in life is usually marked by numerous emotional and bodily illnesses, dementia and deaths, and is linked to dependency and the loss of mobility and cognitive capacities (Gilleard & Higgs, 2010; Lloyd, 2015 The concept of the fourth age, also known as the deep of old age (Featherstone & Hepworth, 1989) , is closely related to carework. Although care is especially needed in the first years of life as well as in case of illnesses, it becomes much more pronounced when older people, often infantilized and perceived as a homogeneous group, start to require daily assistance and support because of illness, loneliness, dementia, and/or disability (Gilleard & Higgs, 2010; Fine, 2015; Twigg, 2000) . In y" f -aging society, challenges related to care of older individuals are becoming high-priority issues for families, caretakers, practitioners, policymakers and scholars working in these fields (Furstenberg et al., 2015; Katz & Lowenstein, 2019; Vincent & Velkoff, 2010) . Cognitive impairment is one of the major sources of caregiver burden and reasons for institutionalization of older adults (Bannon et al., 2020; Friedman & Kennedy, 2021; Reinhard et al., 2008; Sheehan et al., 2020; Strommen et al., 2020; Voutilainen et al., 2018) . Those living with dementia, especially, are assumed to lack M a n u s c r i p t 5 Although the fourth age is seen through rather negative lens, it can offer us significant discoveries about growing older, subjectivity and human interaction (Beard et al., 2009; Hennelly et al., 2021; Kontos & Grigorovich, 2018a , 2019 Lee et al., 2020; Skinner et al., 2018) . A humanities-based approach to care-related stories serves as a powerful tool to give meaning to old age, and offers significant insights into the aging experiences and care relationships (Chivers & Kriebernegg, 2017 During the last decades, there has been a visible growth and interest in age(ing) studies from interdisciplinary perspectives that go beyond the traditional field of gerontology. Scholars working in these disciplines argue that collective cultural-literary perceptions of later-life are imperative to better comprehend the current realities of aging, and bridge the gap between the social and medical sciences and humanities (Barry & Vibe Skagen, 2020; Calasanti & King, 2015; Casado Gual et al., 2016; de Medeiros, 2016; Falcus, 2016; Twigg & Martin, 2015; Zeilig 2011 In Fear of Dying (2015), a middle-aged protagonist Vanessa struggles with parental care, and b " y f w m " , 2017, p. 20) . The choice of home might also suggest the importance that the writer grants to family bonding in later-life and her critique of the medicalised institutions that have invaded the intimate home space (Blaikie, 1999) . Additionally, being taken away from home can be seen as a betrayal, and may cause pain and A c c e p t e d M a n u s c r i p t 7 m u (B 1999) . T y V " parents used to possess decreases as they grow older. Her p " f qu b m their anxiety, unpleasant smells, and the sick-like atmosphere propel the daughter to wish that people did not get as old and ill as her parents: [t]hey both wear diapers -f w " u y. T m m f u m . T w . I " y b b u . It seems diseased. Its fetid aroma permeates everythingthe oriental rugs, the J . I " m b even in the living room (Jong, 2015, p. 9). In her novel, Jong does not shy away from explicitly describing care-related challenges, but exposes her readers to the often hidden aspects of the fourth age and the negativities of aging bodies, which are often neglected in the field of gerontology. Twigg (2000) states that caregiving for older people is often a missing dimension in gerontological research since it represents the human dirt, low status, and ageist and gendered accounts Although Vanessa is also exposed to the bodily deterioration of bother her mother and does not provide us with many bodily images of aging women, especially those " " age (Silver, 2003; Twigg, 2000; Wolf, 2002 [a]nd the strangest thing is this: When he was alive, I thought all our conversations were partial, frustratingunintelligible. But once he was dead, we really began to talk. We talked through all my dreams. We talked every night till the small hours of the morning. Alive, he was closed and careful. Dead, he told me everything. I think he may be dictating to me now (Jong, 2015, p. 126 ). (Calasanti, 2016; Katz & Calasanti, 2015) . Successful aging discourse, aimed at replacing the narrative of decline (Gullette, 2004) , according to which aging individuals are seen as dependent and frail, disseminated the idea that it was possible to avoid disease and illnesses in later years by actively engaging in life (Rowe & Kahn, 1998) . The main idea behind this model was that as long as older people were able to enjoy life, maintain healthy habits, and enthusiastically participate in social circles and leisure activities, they were aging in a successful and gracious way (Calasanti, 2016; Katz & Calasanti, 2015; Katz, 2000) . A c c e p t e d M a n u s c r i p t 10 model continues to heavily influence our daily lives and social trends to the extent that [w]e are so unaware of different languagesnot Latin and Greek, but the language of color, the language of food. We hardly know all the different kinds of human music. My mother could speak without speaking, laugh without laughing, sing without having voice. The parents of special-needs kids know this and so do the children of the dying (Jong, 2015, p. 229). clothing, which reminds her of her younger days and makes her happy, even if she cannot verbalize her emotions: [s]he sits up and tries to exclaim at the color of my shirtred and purple with mossy green. An Etro confection she might have worn when she was young. Her taste in clothes was always over the top, ahead of her time, widely artistic. But " . f m m y dive swiftly into the water. She lifts her shoulders strongly, though by now she " u . x m w u x m . I w f my colorful colorsso like those she wore in her salad days. She has found a new sort of speech that is wordless (Jong, 2015, pp. 228-229) . The challenges of caregiving and ol y J " fiction, but also in her more personal accounts, in which the author writes about her " y x w . In her essay "B f b " which precedes Fear of Dying, Jong states: [w]hen I tell people my mother is a hundred and a half, that my grandmother lived to ninety-eight and my father to ninety-three, they look at me approvingly y "Y u" " f y b u f w b enviou . T y w y" y (J 2014 . 84). Jong, likewise her fictional character Vanessa, discovers m " w y of communication and self-expression. T u x u m " days, she would only react to color, which made Jong realize the power of non-verbal communication and the complexities of living and aging with dementia: [i]n the last few days, she was alert enough to respond to color, though she could not speak. I came to realize that I had underestimated her grasp of language. Color was her language, and a bright shirt I wore to sit by her side and tell her I loved her evoked a passionate response (Jong, 2014, p. 92). M a n u s c r i p t 13 I m "Dy b " (2014) w m z he newly found ways of interaction with her dying mother. The caregiving experience allows Jong to reestablish their conflicting relationship ( , 2016) and reconnect emotionally through color, touch and wordless language: [t]ouch, words, color, / my expiring mother / notices the red & purple of my shirt / with delight. / Color is her language / though she taught me / both painting & poetry / interlocking languages for her / & now for me. / She has no words for my shirt / but exclaims nonsense syllables / of joy, her only brush now / for the ecstasy of red, / the blue note / of mauve over it, / making plum. / Her sounds b m / m j m / m " / w bu mu . / Bu is clear. / Her love assails / my eyes / as if it were / blood glittering / on a knife / aiming for / my heart (Jong, 2014, pp. 92-93) . The power of non-verbal communication is getting more attention in the field of age(ing) studies, especially in dementia-related research and person-centered care, which significantly contributes to improving quality of life and cognitive function of older people and their carers (Dewitte et al., 2020; Hennelly et al., 2021; Kelley et al., 2021) . Creativity and arts-based activities, such as painting, music, drama and/or dance can improve the physical, emotional and neurological wellbeing of people living with dementia, and provide them with new ways of social interaction and emotional support (Kontos & Grigorovich, 2018a , 2019 Li, 2021; Skinner et al., 2018) . Such nonpharmacological interventions allow for alternative ways of communication and the creative-x w w u x " thoughts, emotions and capabilities. 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Kontos and G m z m f " mb f " f y w w m m : " mb f u intrinsic corporeality of being-in-the world, which sustains and animates selfx w w y w w w " (2018 . 718). E when faced with dementia and a lack of coherent and rational engagement, diverse forms of personhood and sense-making still remainolder people strive to negotiate their everyday lives and incorporate their cognitive decline into their existing selfidentities (Beard et al., 2009; Hennelly et al., 2021; Li, 2021) .A c c e p t e d M a n u s c r i p t 14 Personhood as a concept has both metaphysical and moral roots: metaphysical aspects relate to rationality and agency, whereas moral selfhood is linked to equality of all human beings (Higgs & Gilleard, 2016) . However, people with dementia are often regarded as nonpersons because they lack these competences and skills (Hennelly et al., 2021 ). Yet, the problem of conveying selfhood marked by dementia is not only difficult to conceptualize and describe, but is often absent from gerontological research. In her y "C " B y (2020) x u u y f u " y w "bodily decay, even if they represent the fear of growing older and go against the ideals of successful aging in our modern secular society that emphasizes youth, beauty and self-management (Calasanti & King, 2015; Silver, 2003; Smirnova, 2012; Twigg, 2000 Twigg, , 2012 Wolf, 2002 240). Taking care-related narratives into account would strengthen collective solidary and help manage the increasing anger towards the aging population, which has become especially pronounced during the Covid-19 pandemic (Ayalon et al., 2020) . If, before this crisis, older people living with dementia were already at high risk for negative health outcomes and exclusion, the Covid-19 outbreak has acted as a magnifying glass that has exposed increasing ageism and the fear of old age ( For an in-y f b y E J " w 2019; 2020. None reported. None reported.