Shrishti Dey and Aratrika Das reflect on caregiver burnout and the challenges that beget informal caregiving through Namita Gokhale’s novel The Blind Matriarch (2021).
Caregiving
Leininger (1988, 414) defined care as “supportive actions that assist, support, or help another person or group with evident or anticipated needs to improve a human condition or lifestyle.” Unlike formal caregiving, which is often reimbursed with financial reward, informal or filial caregiving often lacks any kind of systemic support (Simon et al. 2002, 30). Primarily focussed on elderly individuals with whom the caregivers share a relationship, filial caregiving falls under a “routine” and sits beyond any formal agreements (Goodhead and McDonald 2007, 4). Such filial caregiving tends to give rise to higher levels of fatigue and burnout (Devi Prasad and Rani 2007, 220).
These challenges, which move beyond the biomedical framework of caring, have been particularly lacking in critical attention. And yet, it is these same challenges that are foregrounded through the descriptive power of literature. The literary representation of intergenerational caregiving also prevents the oversimplification of this essential role, especially in the family dynamics of the South Asian context. This focus on the caregiver also offers opportunities to expand the reach of the health humanities, which are often more focused on the one who seeks healthcare, rather than on those who support them (Garden 2015, 77).
Gokhale’s engagement with ageing and intergenerational caregiving
Patrick Colm Hogan (2011, 28) suggests that “literature is a form of simulation,” thus allowing its readers to engage with the situations of the fictional characters and respond with empathy. We find this played out in Namita Gokhale’s The Blind Matriarch (2021), a narratorial engagement with the ageing experience, presented through the lens of the matriarchal figure, Matangi Ma. The text depicts a family presided over by the blind, ageing matriarch, surrounded by her children and grandchildren, dealing with a range of issues caused by the distribution of her late husband’s wealth. Caught in the throes of her blindness and the levels of incapacity that result, the text addresses the subjective experience of ageing, as the world around Matangi Ma is in constant flux.
The prose draws readers into an emotional landscape, navigated by the ageing protagonist and her caregiver daughter, Shanta, thereby evoking the intergenerational format of informal caregiving that is particularly prevalent in the Indian context. This mode of caregiving is a “complex, evolutionary, and intersubjective life experience wherein connections are cocreated and expressed in behaviours and actions of concern, responsibility and attention” (Dhar 2012, 242). Through metaphorical language, Gokhale describes the complexities of the caregiving relationship and universalises the care equation involving aged parents. This allows readers to step into the character’s shoes and gain a better appreciation of the issues at stake.
Caregiver burden and role conflict
Gokhale’s depiction of Shanta, Matangi Ma’s spinster daughter, who considered herself a “natural caregiver” (146), opens up avenues to illustrate caregiving challenges within the Indian society as a whole, highlighting the core social values of collectivism, emotionalism and the feminisation of caring (Devi Prasad and Rani 2007, 217). This calcifies care as a social and moral duty (Pattanayak et al. 2010, 112) and a cultural expectation of women (Bhagat and Unisa 2006, 212). With its significant ageing population (Chatterjee et al., 2008), India is likely to face the issue of caregiver burden at both macro and micro levels. This burden refers to the “physical, psychological, emotional, social and financial stresses” (George and Gwyther 1986, 253) encountered by long-term caregivers.
Shanta slips into the role of a caregiver for her ageing mother as she is “patient, kind and not easily perturbed” (146), and thus exemplifies the qualities often desired in long-term home care. Yet the home space functions as the source of chronic stress (Pearlin et al. 1981) for Shanta, where she is in constant contact with the care receiver and feels “claustrophobic and ill-tempered and snappy” (146). This reaction can be read as a “microbiological substrate of stress” (Pearlin et al. 1981, 337). The role overload from the filial caregiving task, performed solely by her, results in this subjective feeling of entrapment. Her experience is markedly different from that of professional caregivers, who can separate the worlds of home and work.
Disrupted schedules and lifestyle changes constitute one of the significant adverse outcomes of caring for an ageing family member (Yoon et al. 2014). This results in a degree of social isolation. In The Blind Matriarch, Shanta wonders, “When was the last time she enjoyed a good gossip? What was wrong with her?” (167). Her filial obligation to look after her ailing mother resulted in distancing herself from the organisation named “Women for Peace,” which previously served as the sole purpose of her life. This organisation, with people from all walks of life who shared similar values and beliefs and worked together to ensure societal well-being, empowered Shanta to look beyond her caregiving responsibilities. The isolation generated by the pandemic and her caregiving duties made her wonder if she “was doing the best for herself” (166) and caused her to reflect on how she “had retreated into herself, step by step” (167).
The caregiving landscape of the text, set against the social isolation provoked by the COVID-19 pandemic, further exacerbates Shanta’s loneliness. Her embodied experience of being an informal caregiver, with the weight of her work, makes her feel “L.O.N.E.L.Y. Isolated. Alone. Friendless. Forsaken” (166). Shanta’s informal role offers no compensation, leaving her feeling “empty and exhausted” (164). Her prolonged period of caregiving for her ageing mother results in a withdrawal from her social support group and dissolves the “joys, the intimacies, the laughter” (166), which she once deeply valued.
The performative aspect of caregiving
Studies in social gerontology have suggested that the embodied experiences of women caregivers are illustrated through their verbal and nonverbal expressions (Silverman 2013, 288). These expressions, depicting the vulnerable state of the caregivers, have been mostly “considered from scientific, medical and sociological standpoints” (Holland-Batt and Miller 2023, 1646). Pursuing research at the intersection of social gerontology and literature generates more tangible and nuanced understandings of the visceral realities of caregiving, including gestures and movements like “worried glances, reassuring looks or gentle touches” (Silverman 2013, 292).
Moreover, the lived experience of caregiving requires a high and consistent degree of emotion and body management (Silverman 2013, 291), thus making it performative – something that becomes apparent within the text. Likewise, the emotional labour that begets caregiving can be studied through “bodywork” (Silverman 2013, 293), which might emote restraint and distance. We find a literary example of this when, on one occasion, Shanta goes to the balcony in search of respite from her care work, despite the scorching heat outside. Matangi Ma was showing symptoms of the COVID contagion, and the constant handwashing, sanitising and caregiving had transformed the entire scenario into a “nightmare” (146) for Shanta. Shanta’s textual portrayal in this scene takes on the quality of a “videotape” (Silverman 2013, 290), which captures her non-verbal expressions of exhaustion and desired disassociation. The third-person positionality of the omniscient narrator acts as a recording which captures the interplay of emotions that the character goes through.
Gokhale combines physical descriptions and metaphorical language to represent Shanta’s plight, thus enabling readers to peek into her life, almost like watching a tape recording. The narrative acts like camera footage, providing readers with “privileged access into the subject’s daily reality” (Silverman 2013, 295). The “breather” (146) on the balcony offers her a space wherein she can “relax and let go of performance” (Silverman 2013, 293), an opportunity to cease concealing her fatigue. Gokhale writes of how Shanta’s relentless acts of caregiving, coupled with the isolation stemming from the pandemic, made her feel “claustrophobic and ill-tempered and snappy” (146). This contradicts the otherwise “patient, kind and not easily perturbed” (146) qualities that were previously associated with her. The literary exploration of the performative aspect of caregiving therefore allows readers to peek into the private lives of long-term caregivers.
The metaphorical language of the text also enables readers to understand caregiving as more than just a physical task. The use of words like “claustrophobia” and “entrapment” highlights the lack of freedom that results from the constant need to be on high alert around the care receiver. This usage of metaphorical language also universalises the caregiving experience, allowing readers to connect with the character. In turn, this enables the generation of empathy, which springs from the ability to connect “with the cognitive, emotional, and bodily situation of another, offering a feeling of identification and likeness with the lives of others” (Holland-Batt and Miller 2023, 1646).
Fiction, therefore, facilitates a certain imaginative empathy with the characters. The vivid description of the psychological challenges of caregiving creates a space for readers to find similarities with Shanta’s character in a text that primarily talks about the ageing matriarch. Likewise, the frustration depicted as we accompany the ones providing long-term care may trigger compassion among those who have faced similar situations. It might also generate empathy in those more remotely connected to these experiences, by making them feel how it is to live like someone else.
Conclusion
Caregiver perspectives and their participation in creating healthcare vocabularies enable fresh understandings of burden, demolition of agency, social isolation and exhaustion resulting from the performative aspect of caregiving. The burden of caregiving illustrated through Shanta also makes a case for the importance of social groups in helping people disengage from stressors and the need for self-care. Gokhale’s fiction facilitates the co-existence of diverse narratives, including a caregiver’s marginalised voice, thereby empowering readers in similar life situations. It pitches for the curation and assemblage of a support system, mental health resources, policy changes, awareness, compassionate societies and a narrative template that would enable caregivers to find their voice. This approach will help shift the focus onto the care provider, thus balancing the caregiver-receiver dyad and humanising these experiences, which are often taken for granted.
A deeper understanding of such texts such as Gokhale’s also uncovers healthcare’s structural inequities and marginalising aspects. It advocates the importance of relational well-being instead of individual health and facilitates reflection in healthcare education. The cross-pollination of literature and social gerontology likewise answers many of the “how” and “why” questions surrounding caregiving. The descriptions of claustrophobia and entrapment enable readers to connect with the emotional toil of caregiving, thus pressing for a change in healthcare policies. Such depictions allow a fuller understanding of caregiving by deepening emotional engagement with the characters, applying these narratives to practical healthcare, and advocating for systemic changes and policy reforms.
About the authors
Shrishti Dey is a third-year doctoral candidate (English) in the School of Humanities and Social Sciences, Indian Institute of Technology, Indore. Her areas of research are medical humanities and literary gerontology. She has previously published an article titled “Munnabhai MBBS (2003) and the Germination of Medical Humanities in India” with The Polyphony. She also recently presented a paper titled “Spaces of Care as Breeding Ground of Human Connection” at the Health Humanities Consortium HHC, 2024.
Aratrika Das is Assistant Professor (English) in the School of Humanities and Social Sciences, Indian Institute of Technology, Indore. Her research interests include nineteenth-century British literature, the Gothic, medical humanities and writing pedagogy. She received the Young Researcher Seed Grant 2022-2024 from IIT Indore. She is currently working on projects including “Teesta and Siliguri in Maps, Memories and Music”, funded by the India Foundation for the Arts, which focuses on methods of archiving the social, ecological and cultural practices of South Asia, and “Critical Thinking and Writing Lab IIT Indore”, funded by the JP Narayan Center for Excellence in the Humanities 2023-25, which seeks to create pedagogical tools and theoretical vocabulary from South Asia.
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