Bev Said “No”: Learning From Nursing Home Residents About Care Politics in Our Aging Society

Abstract

How do nursing home residents decide when, whether, or how to respond to their own and others’ care needs when the need to do is constant? What can we learn from them about care politics in our aging society? Drawing on ethnographic research conducted in three long-term residential care homes in Ontario Canada, this article weaves approaches from the arts, humanities, and interpretive sociology to respond to these questions. Contextualizing nursing home residents’ stories of care within broader sociocultural and political contexts, I consider how they develop critical and creative insights, not only about direct care or nursing home life but about moral, philosophical, and culturally significant questions relevant to care provision. As political actors engaged in a “politics of responsibility,” they put work into navigating, negotiating, and making sense of their own and others’ care needs in under-resourced contexts and in relation to circulating narratives about care, aging, and disability. Exposed to constant demands to care for others, residents’ stories highlight the importance of expanding cultural narratives to embrace embodied differences or care needs, to help people to talk about their own needs or limits, and to organize care as a shared, collective responsibility.

Care ethics, Long-term care, Narrative analysis, Politics of responsibility, Privatization

“I’d help them if they wanted me” was a comment from Bev, a resident living in a nursing home in Ontario, Canada. She positioned herself as a caring person, yet also confessed that living with and constantly being surrounded by people with such complex care needs had led her to set limits on the support she could provide. Speaking of another resident who continually asked for her help, Bev said, “But that’s not my job and I’ve told her.” Relatedly, a younger resident Joey stated, “I believe in inclusion, but …,” before expressing that he wished he could live on a different floor away from the older, disabled people continually needing something from him. While conducting ethnographic research into nursing home life, I felt the weight of comments like these and of moments when research participants struggled to talk about others’ embodied differences or complex care needs. In my research on the “limits of care,” people positioned differently (including nursing home residents, family carers, and paid staff) often shared about setting limits on the support they could provide or negotiating responsibilities for care. They told stories that didn’t always put themselves or others in the best light. Yet, I couldn’t bring myself to frame their individual actions or expressions as “ageist” when they were also telling me about how they had been set up and pitted against others.

The privatization of long-term care in Canada and in other welfare states shapes how people negotiate responsibilities to care for themselves and others. Although it may take many forms, privatization at its core involves shifting away from the public delivery of care services, as well as from commitments to shared responsibility, democratic decision-making, or public services for all (Armstrong & Armstrong, 2019). In nursing homes across Canada, the fact that staffing levels have generally not kept pace with residents’ increased acuity needs and increased needs for complex care is one form of privatization, as is the growing reliance on unpaid work (Armstrong, 2023). Paid care workers and unpaid family carers alike are pressured to pick up the slack by taking on additional, unpaid care work to make up for gaps in care (Armstrong & Armstrong, 2019; Molinari & Pratt, 2021). Furthermore, as I examine in this article, nursing home residents themselves are tasked with addressing their own and others’ care needs and with negotiating their relationships with the people they live within the context of privatization and neoliberalism. This is particularly the case given that residents have varying health and mental health diagnoses or needs (Giosa et al., 2014), and require different levels of support in performing activities of daily living (Patterson, 2016).

The stories of Bev and Joey presented above are indeed rejoinders to care’s inequitable organization with clear links to privatization and the underinvestment in publicly funded care services. They also seem to raise other questions. In turn, beyond a focus on residents’ practices and interpretations, and beyond using their stories to reveal dimensions of social organization, this article considers how to learn from the culturally and politically significant insights of nursing home residents. I ask: how do nursing home residents negotiate responsibility for their own and others’ care? How do they decide when, whether, or how to respond to their own or others’ care needs, when the need to do so is constant? What can we learn from them about the “cultural politics of care” in an aging society?

In responding to these questions, I develop and apply a transdisciplinary, story-rich approach that recognizes both that the social representations of care and aging that we bring forth matter, and that we need the conditions to pull things off. In particular, I consider how approaches from the arts, humanities, and interpretive sociology can support multilayered readings and situated, reflexive engagements with data. In doing so, I contribute to research and thinking in gerontology, which has long drawn on approaches from the arts and humanities, while pushing for “complex, interdisciplinary thinking and creativity” (Kivnick & Pruchno, 2011; see also Achenbaum, 2020; de Medeiros, 2014). My second contribution is in presenting an interpretive analysis that elaborates on the everyday reflexive work and learning that happens in nursing homes, as people actively negotiate their circumstances (and need conceptual resources to orient to their own and others’ embodied differences and care needs). Contextualizing their stories of care, I consider how residents’ work to navigate and rethink dominant cultural expectations comes with invitations for rethinking conceptions of care.

With such a focus, this research responds to calls to move beyond a focus on questions of “who does what” (Doucet & Klostermann, 2023) by orienting to the long-term care sector as a sociocultural and political context in which meanings and expectations around care are negotiated and remade, including through expressions of agency and resistance. Of note, in their research on Swedish environmental movements, Thörn and Svenberg (2016) develop the notion of a “politics of responsibility” to account for processes of responsibilization and de-responsibilization, as individuals both take on responsibility for environmental causes (such as through expressing guilt or expressing individual moral agency) and resist or renegotiate responsibility (such as by redefining moral agency or calling on corporations or political institutions to take responsibility). In this article, exploring questions about care-related responsibilities in the context of neoliberal privatization, and orienting to nursing home residents as political actors engaged in a “politics of responsibility,” is part of my contribution.

To “set the scene” in the next section, I offer a brief overview of Ontario’s long-term residential care sector, before situating my research in relation to existing scholarship on residents’ practices and organizational relations. I then introduce my feminist theoretical and methodological approach and study design, before presenting my findings.

Setting the Scene

In Canada and other welfare states, facility-based care homes (aka long-term residential care homes or “nursing” homes) are a vital part of social infrastructure, providing live-in, 24-hour support and accommodation to people whose care needs extend beyond that which can be provided in the community. Long-term residential care is an increasingly precarious sector that employs a workforce of mostly women, including racialized, immigrant women (Das Gupta, 2020; Syed, 2020). Across Canada, the creep of neoliberal agendas and forms of privatization in long-term residential care have marginalized and limited social aspects of care and increased the reliance on unpaid care (Armstrong & Armstrong, 2019). There has also been a move to privatize long-term care in other countries, with some international variations and with different starting points and private sector capacities (Ågotnes et al., 2019; Lloyd, 2019). Reports and public commentaries highlight innumerable crises within Canada’s long-term care sector. With clear links to inadequate public sector services and sociodemographic aging, increasingly we hear stories of acute staffing shortages, care facilities that are closing or unable to open, inadequate care levels or long wait lists for care, escalating violence, accident and injury rates, and high death rates in care homes (see Banerjee et al., 2012; Gil, 2021). This was all too clear with the COVID-19 pandemic with high death rates in nursing homes across Canada (CIHR, 2021). In nursing homes, these are all issues of gender and intersectional inequity, as the majority of nursing home residents are older women, with women, and particularly racialized immigrant women, shouldering the work and costs of care.

Care scholars have long attended to the everyday health work, life work or self-management work that people accessing care do (Aronson, 2002; Hurl & Klostermann, 2019; Lombardo et al., 2014). Attending to this work provides insight into how responsibility for one’s health is shifting from governments to individuals (Barken & Armstrong, 2019; see also Sinding et al., 2010). Lombardo et al. (2014) note women needing home care put work into “mobilising financial, social and interpersonal resources; living out shortfalls by making do, doing without, and emotional self-management; and avoiding illness and maintaining health” (p. 575). Aronson’s (2002) research on homecare also shines a light on the work of those receiving services. In her study, one person noted that “the government said: ‘Well you should get family’” (p. 408), while another woman said her case manager advised her to recruit a neighbor to help with her evening eye drops (p. 409). These older adults were tasked with getting creative to try to get their care needs met, with many expressing not wanting to be a burden. As Katz (2020) notes, beyond sustaining their basic needs, individuals in different age cohorts are often “expected to self-manage their life in socially valuable ways” (p. 51).

In the context of long-term care, some researchers have found that nursing home residents work to “make the best” of it (Kahn, 1999) or downplay their struggles with family and friends (Wilson, 1997). They learn to conform or become part of the institutional routines to survive, and to try not to present as needy, difficult, or troublesome (Wiersma, 2010). They also negotiate interactions with workers in different social locations or from different cultural backgrounds (Kilaberia, 2021). Other studies find that nursing home residents respond to, and even resist, their situations such as by creating private spaces in public settings (McColgan, 2005) or by resisting institutional routines, expectations to conform, or staff labels of residents (Paterniti, 2003). Residents put thought into “liv[ing] alongside” others with complex care needs (Herron & Wrathall, 2018). All of this “care negotiation” work takes time, energy, and effort, as people participate in, learn about, and negotiate everyday institutional routines and relationships.

Sociological responses to issues in long-term care primarily focus on people’s everyday practices or work, identifying organizational or sectoral-level solutions to improve conditions of work and standards of care (Armstrong & Braedley, 2013, 2023). For decades, scholars have made links to medical and capitalist models that are counterproductive to residents’ health and fail to adequately address their social and emotional needs (Diamond, 1983; Gubrium, 1975). Recent scholarship attends to gender and intersectional relations (Storm et al., 2017), divisions between paid and unpaid work (Armstrong, 2023), to how formal and informal supports are shaped through a network of social and physical environments (Herron & Wrathall, 2018), and to issues of embodiment or relationality (Grigorvich & Kontos, 2018; Martin et al., 2013). Scholars call attention to how fears about population aging or social welfare spending/sustainability (Braedley et al., 2021) or discourses of burdensomeness (Kunkle et al., 2020) shape people’s experiences. Of note, Lloyd (2019) illustrates how the “low value placed on [the lives of older adults] in a market system” (p. 205) puts the welfare of older residents at risk. As she notes, residents are not simply vulnerable because of their age or health problems; there are clear links to “structural factors that make a life more or less precarious in old age” (p. 197). With privatization, care becomes a commodity, rather than a public responsibility, which compromises the health and well-being of residents (Lloyd, 2019).

Many are aware of how the restructuring of late-life care through privatization and underinvestment makes it hard for people to set limits on the care they provide in relation to others’ care needs (Klostermann, 2023). In fact, negotiating expectations to care for others is also something that long-term care scholars experience and can relate to. “Where, in an area of such crying need,” Tinney (2008) asks, “does the responsible ethnographer draw the line and limit participation to remain an ethically responsible observer and reporter?” (p. 203). Looking back on her experience as a researcher in a “non-care” volunteer role, Tinney (2008) expressed how hard it was to “ration” her support when the need for it was constant and when others “saw [her] available as an extra resource” (p. 208). Diamond (1983) elaborated on similar dynamics in his covert ethnographic research. He recounted being reprimanded for sitting down and spending time with a resident while working as a nursing aide, saying, “My job priorities did not include sitting with Mary Karney” (p. 273). As he put it, “To walk away from her at that moment [when she had been crying] was consistent with the logic of capitalist medicine but completely contradicts my sense of health care—and Mary’s” (p. 274, emphasis added). With the phrase “and Mary’s,” Diamond (1983) calls attention to how nursing home residents themselves actively navigate, negotiate and make sense of relations and meanings of care. Such an insight calls for other inquiries into how residents themselves put time, effort, and energy into navigating the circumstances of their lives and rethinking their “sense of health care.”

In turn, just as ethnocultural gerontologists recognize that transnational relations are about migration and about culture (Koehn et al., 2022), this article considers how to more generatively orient to the long-term care sector as a sociocultural and political context. I draw inspiration from Katz (2020) who refers to nursing homes as sites where “public health politics and cultural narratives about ageing have converged” (p. 41). As noted, I orient to nursing home residents as political actors engaging in a politics of responsibility (see Thörn & Svenberg, 2016). Furthermore, recognizing “responsibilization as a process involving negotiation and/or struggle” (e.g., Reinecke & Ansari, 2016; Thörn & Svenberg, 2016), I attend to residents’ practical and interpretive strategies, as they navigate care-related relationships and responsibilities.

Feminist Theoretical and Methodological Approach

When it comes to gathering the conceptual resources to contextualize and learn from nursing home residents’ stories and strategies, I apply insights from a range of traditions. More particularly, I bring together insights from the arts, humanities, and interpretive feminist sociology to undertake research that: (1) starts with stories, while learning from people as storytellers and knowledge producers; (2) reveals social relations and imaginaries through an analysis of stories and rhetorical work; (3) reflects on one’s own and others’ active participation in the social relations of our lives; and (4) brings forth new stories, meanings, and relations.

First off, I apply insights from the humanities to attend to people’s stories, while orienting to people as storytellers and meaning-makers. My research takes seriously that stories and other social representations matter; while stories do not always represent or tell us exactly what the social is, they are products and projections of people’s ideas, beliefs, and attitudes and they do help us to think about what society is and could become (Chivers, 2015). Social representations are significant because they affect life; the way we narrate or figure life “stands to change [our] social, cultural, political, and economic structures” (Chivers, 2015, p. 49). Starting with stories offers a way to attend to individual agency and to situational complexities, while orienting to ourselves and others as meaning-makers and storytellers with critical and creative potential (Chivers & Kriebernegg, 2017). This mode of working is informed by research that both orients to people who rely on care, not as passive recipients of institutional processes, but as active agents (Temina et al., 2022), and honors older people’s agency and creative potential, while valuing their insights (Chivers, 2013; Chivers & Kriebernegg, 2017). Such an approach can support with attending to, challenging, and resisting oft-ageist stories, representations, perceptions, stereotypes or valuations of aging, old age, older people, or late-life care (Chivers, 2013; Gullette, 2004; Lamb & Garden, 2019). It can also help to attend to diversity or to tease out differences related to race/ethnicity, gender, economic status, age, ability, immigration status or language (Ferrer et al., 2020).

Second, as a feminist sociologist, I interrogate sociocultural meanings and relations of aging and care, considering how they shape, and are shaped by, people’s social practices. A feminist interpretive approach supports with explicating dimensions of social organization such as by moving beyond understandings of ageism that put the focus on behaviors, stereotypes or beliefs, to instead explicate structuring relations and imaginaries. For instance, Aubrecht et al. (2020) analyze the “weaving of material, social, and cultural relations in and through which meanings of bodies as young or old are made and unmade” (p. 5), while also tracing oppressive or “colonial histories and legacies that shape contemporary realities and social relations” (p. 7). In attending to how people’s practices make up the social, Smith (2005) offers an expanded definition of “work” that includes “anything done by people that takes time and effort, that they mean to do, that is done under definite conditions” (pp. 151–152). Although I was initially trained to use institutional ethnography to attend to people’s everyday material practices, I have since applied insights from the approach to attend to people’s stories, interpretive practices, or “rhetorical work” in conversations, as my focus has been on revealing circulating narratives and moral, gendered dimensions (Klostermann, 2019, 2021). Recognizing that people’s material conditions shape their ways of imagining or framing their lives (Braedley, 2018), I draw inspiration from sociological research in critical aging studies that brings extended structuring relations, processes, policies, discourses, or ruling metaphors into view (see Aubrecht et al., 2020; Braedley, 2018).

Third, beyond listening to people’s stories to learn about social relations or imaginaries, approaches from the arts and humanities support me in reflecting on my own active participation and shared implication in social relations of care. With such a focus, the aim is not to pin down measurable or verifiable explanations or certitudes (Cole & Ray, 2010), but to “address complex questions that have no definitive answers” (Kivnick & Pruchno, 2011, p. 143). In performance storytelling, the aim is to put yourself on the line, telling stories that are yours to tell or where you have stakes. One would not take the stage to tell a story about someone else’s diagnosis or disruptive life experience, without reflecting on one’s own involvement or what that experience meant to them. Similarly, qualitative research can involve asking the questions that are ours to ask or reflecting on our own interwoven histories, relations and narratives. It can foster “radical change in our thinking” (Martin et al., 2013), while supporting the development of “transformational knowledge of self, relations of power, and a vision of alternative possibilities in relation to that knowledge” (Changfoot, 2016, p. 62).

Fourth, I aim to engage in research to bring forth alternative stories, meanings, and possibilities (Changfoot, 2016; Douglas et al., 2021). Working in this way involves turning to stories as “ontoformative” (Rudy, 2020) in that they “act” and “do things” (Frank, 2010, p. 43), enabling us to create new relationships or realities (Connell, 2012). Like a stand-up comic learning from the laugh of the crowd (Klostermann et al., 2020) researchers and research participants alike can learn in conversation. The research process is interactional in that it provides space to think with others—a space where narratives are told and retold and where meanings can be revised (Doucet, 2018). While focusing on everyday work practices or relationships that people report on (such as care on the clock) can prove generative in understanding people’s work and organizational conditions, I recognize that we also bring about “the social” in everyday conversations and relationships. Researchers not only attend “to stories that had already been told and retold, but we are also revisiting, remaking, and creating new stories, relations, and worlds” (Doucet, 2018, p. 738). This way of working can contribute to challenging ageism and age inequality (Katz, 2014) such as by imagining alternative aging futures (Chazan, 2020; Sandberg & Marshall, 2017) or expanding possibilities for telling new and better stories (Chivers & Kriebernegg, 2017).

Weaving interpretive and materialist approaches can support with learning from stories and how people narrate their lives, situating and contextualizing research stories (such as to explicate structuring relations and circulating narratives), and crafting alternative stories, insights, and possibilities. Taking a transdisciplinary approach can support with moving beyond a focus on individual examples of ageism, including beliefs, stereotypes, or prejudicial attitudes on the basis of age (Lamb & Garden, 2019) to explicate, rethink and contribute to remaking ageist social structures and meanings, as they are set up and socially organized. When researchers are quick to blame individuals or pass judgment on their comments and actions, we can miss the opportunity to say something deeper about care’s inequitable organization or about the limited conceptual resources people have to draw on to frame their experiences. Furthermore, these ways of working detailed above are also notable given that, to date, qualitative research on late-life care primarily focuses on people’s daily realities and experiences, which has limited the creative and catalyzing potential of qualitative methods in this field.

The Study

My analysis of nursing home residents’ care-related negotiations draws on team-based, rapid, site-switching ethnographic research conducted at three unionized care facilities in central and eastern Ontario prior to the COVID-19 pandemic (Armstrong & Lowndes, 2018). The research was conducted as part of Dr. Pat Armstrong’s “Changing Places: Unpaid Work in Public Spaces” project, a broader project examining the social organization of paid and unpaid work in long-term residential care. Through ethnographic research, our team conducted participant observations and 68 semi-structured interviews with residents, paid staff, administrators, and informal carers (e.g., private companions, family members, and volunteers). Interview participants included 10 care home residents, 12 family members, 22 staff members in different roles (e.g., care aides, nurses, recreational therapists), 15 managers or administrators, eight volunteers, and one private companion. Located in Ontario, the three facilities included one urban nonprofit facility (with approximately 450 long-term care beds), one rural municipal facility (with approximately 70 beds), and one municipal facility in a mid-size city (with approximately 250 beds).

In the three sites, recruitment involved visiting the facilities to distribute posters and brochures and to tell people about the study (including at two family council meetings). From there, site visits at each facility lasted for 3 days with our interdisciplinary research team covering different shifts from 7 a.m. to 12 midnight. As part of the primary data collection and analysis process, our team recorded detailed field notes and analytical memos, and worked collaboratively to analyze materials and reflect on early findings. We discussed observations at each site and in team meetings that followed. In analyzing interview transcripts and ethnographic field notes, I considered how residents participated in organizational life and related to others. I indexed their practices (including practical, interpretive, and rhetorical work), considering how they were socially and institutionally mediated (Klostermann, 2019; Klostermann & Funk, 2022).

The project was approved by York University’s Research Ethics Board, and involved developing and applying a collaborative, team-based “equity-oriented” (Winfield, 2022) “ethical research praxis” that extended beyond the formal review process (Braedley, 2018). Pseudonyms are used throughout. It is also worth noting that the team opted not to collect demographic information during our interviews.

Findings: Learning From Residents About Responsibility Politics in Our Aging Society

In what follows, I will elaborate on how residents undertake a range of work to respond to their own and others’ care needs, engaging in a “politics of responsibility” (Thörn & Svenberg, 2016). This work involves direct care or practical activities, which tells us about inadequate public sector support. It also involves critical and creative work to find ways to recast, resist and negotiate meanings and expectations around care, with this work revealing social imaginaries of care and disability in an aging society.

“Where’s Your Coat?” Residents’ Unpaid Work as Rejoinders to Inadequate Public Services

With clear links to inadequate public sector services, insufficient staffing, and heavy workloads in care homes, the onus falls on individuals to remain healthy, practice self-care or take individual responsibility for their own and others’ care needs. At care homes stretched thin, individuals are left providing unpaid or additional work to pick up the slack. As Molinari and Pratt (2021) put it, the “risks, costs and deficits associated with austerity, privatization, and financialization have been shifted onto workers, residents and their families” (p. 2). Institutional and structural constraints shape the practices and possibilities of nursing home residents themselves (see also Banerjee et al., 2012; Herron & Wrathall, 2018) who feel the weight of, and are tasked with responding to, these inadequate services. The work that residents do to respond to their own and others’ care needs is socially organized. It has clear links to inadequate investments in a public/paid care workforce.

Residents respond to their own and others’ care needs while contributing to the running of long-term care facilities, at times lightening the load of workers. In our research, residents reported looking after some of the more personal care needs of other residents in the context of chronic understaffing. They detailed a range of personal care practices such as cleaning other residents’ razors, adjusting their televisions, or monitoring other residents. One resident said, “I have volunteered my services here to sit with palliative residents who have no one to free up staff and to help them.” Other residents gave examples of advocating for residents or keeping an eye on residents with dementia to ensure that they stayed in the building or were dressed for the weather. One resident, Carole, re-enacted a conversation she had had with a resident with dementia: “I said to her ‘Where’s your coat?’ ‘Oh I left it upstairs on my bed,’ well I said to her, ‘You shouldn’t be out here for very long.’ She goes, ‘Oh I know I know’ and she did.” Carole seemed to express pride in supporting residents on occasions when staff didn’t even “know that they were missing a resident.” One recreational therapist shared examples of help from residents that was very much welcome. She mentioned residents escorting or “portering” others down the halls or a resident who would get started on doing dishes while staff members were baking. We also heard examples of residents contributing to fundraisers, organizing events, handing out supplies, setting up events, serving ice cream and coffee, and so on. Residents engage in a range of work in contexts where they are sometimes understood as “institutional bodies” that fit into institutional structures (Wiersma, 2010; Wiersma & Dupuis, 2010).

How paid work is organized, managed, and staffed gives rise to residents’ practices. Low funding and low staffing levels leave gaps in care with resident care needs which can then either be left unmet or filled in by unpaid work. In speaking of not always being able to respond to her mothers’ advocacy, one family carer Monica said, “I mean I’d love to be able to do something like help feed people because I know that’s a big complaint from my mom; she feels so bad for [other residents].” She noted that her mom hates seeing others’ “meals getting cold which is a no-no with her.” She also said that two PSWs (aka care aides) are responsible for feeding 32 people, with around 80% of them needing help at mealtime. Workers’ hands were often tied with their own scope of duties or already full plates. Residents’ social practices have clear links to institutional constraints. Despite some residents having increasingly complex care needs, workers are tasked only with delivering “bare bones care” (Molinari & Pratt, 2021), which shapes residents’ involvement and participation, while also constraining their choices.

For residents who are living in and seemingly always on hand, others’ endless care needs can give rise to deeply felt interpersonal tensions or negotiations that they then have to negotiate or figure out whether or when to set limits or say “no.” If more paid staff had been on the floor, Bev (introduced above) and others likely wouldn’t have been put in situations where they’d face as many requests or would have to set limits. In fact, Bev herself elaborated on how paid staff can make a difference in limiting the care that residents are asked to provide. When asked whether she helps anybody in the dining room, Bev said, “Well, see we have enough staff that they’re taking care of ones that can’t feed themselves, right?” Bev’s point was an important one, as it highlights how the mandated hours of care per day for residents and the number of staff on a shift shape residents’ “care negotiation” practices, as well as the nature of relationships between residents. It was also notable that even though Bev had once worked in housekeeping, she wasn’t being approached to help with that work. “No, I’m out of that,” she said, laughing. Residents’ stories speak to the need for investments in public care and adequate staffing levels to support and facilitate residents’ meaningful and consensual involvement in organizational life.

Having explored how residents negotiate complex relations of support with others in under-resourced facilities, I will elaborate below on how their “work” is not just about direct care, practical skills, or instrumental needs, but involves interpretive negotiations in relation to cultural narratives or dominant expectations around care.

“But That’s Not My Job”: Residents’ Work to Negotiate Meanings and Expectations Around Care

In long-term care, some residents put a lot of time and energy into making sense of, and finding ways to even talk about, their everyday lives and care-related responsibilities. As political actors engaging in a “politics of responsibility” (Thörn & Svenberg, 2016), residents not only engage in practical work to take on responsibility (or not), but they also engage in a range of interpretive and rhetorical work to understand their circumstances or spin their stories in relation to their sense of selves, others and to circulating narratives of care, aging and disability.

In the research I conducted, some residents seemed to struggle to make sense of, or to know how to talk about, their own or others’ care needs. Some crack jokes to cope, while others discuss not wanting to be burdens (Barken, 2017; Klostermann, 2023). This too was work. One resident, Betty, said, “Um, now mind you uh, this sounds like I’m a little bit conceited, I don’t mean it conceited at all I’m just telling you the truth. I am one of their better patients because I’m in good health, I’m in real good health, I don’t have an ache or a pain anywhere in my body. And I’m 92 years of age.” With an “um” and an “uh,” and with her worries about sounding conceited, Betty qualified her response and seemed to need permission to speak about it. Her account speaks to the need for residents to have access to critical discourses that could provide traction for talking about and orienting to embodied differences and disability. What about disability as a site of joy, meaning-making, relationality, or critical and creative potential? Why are others’ care needs and embodied differences hard to talk about?

Some residents seemed to struggle to talk about their difficulties living with others or about their experiences setting limits on the direct care they provide. One resident said, “Oh yeah, like on this floor there’s maybe 3 or 4 of us that probably haven’t had a stroke and don’t have dementia and there are 32 residents so it’s a little bit difficult living in that environment.” Those “difficulties” had clear links to inadequate institutional support. Relatedly, to circle back to Joey’s comment, he said, “I believe in inclusion, but I also think that they should have a floor for people that are cognizant away from people that are having to deal with issues.” It’s worth flagging that he was careful in how he framed his comment and perhaps aware of how his comment could be read as ageist or ableist, but part of what he seemed to want on the record was that it was a hard environment for him to live in, with him winding up doing some of the care. As Lloyd (2019) would remind us, the problem wasn’t others’ health problems or care needs, but “structural factors that make a life more or less precarious in old age” (p. 197).

As introduced earlier, Bev, a resident in her 80s, said, “Oh yes, if they need help, I’ll—I’ll do it.” She made an effort to position herself as a caring person. When asked for an example of how she supports other residents, she said, “Oh, like they can’t seem to walk too far, so you take their arm and sit them down.” As noted above, while Bev presented herself as someone who would willingly and gladly offer to help others, she also mentioned she has had to set limits on the support she could provide to a particular resident. As she said, “But that’s not my job and I’ve told her.” Bev seemed to distinguish between supporting someone voluntarily and on her own terms, and having it seen as her “job.” Although she did not elaborate, her story raises questions about how much would have led up to that—how many moments of volunteering or being willing to help—had led up to her setting limits and saying no, “that’s not my job.” So, it is not just that she was struggling to get her own needs met, but that she was also tasked with negotiating others’ needs.

What was striking to me in Bev’s story was that, even as she lived in a place where she herself was eligible for 24/7 care, she too upheld and negotiated gendered imperatives to care, in struggling to set limits on the care she provided. In my research, I attend to how paid and unpaid carers set limits or negotiate responsibilities for care (Klostermann, 2021), but I found her story particularly problematic in that she herself was eligible for care. I could also sense how hard it was for her and other residents to navigate these life situations, how they might worry about not being inclusive or come to see themselves as the problem. I can also see how it takes work and support to be able to place the blame on the ageist structures giving rise to those deeply felt interpersonal dynamics. Like Bev, residents need to be able to access conceptual resources to situate and frame their own experiences or care-related negotiations. Furthermore, with no clear distinctions between carer and “cared for,” it’s well worth reflecting on how Bev or other women residents whose lives have been defined by caring for others were tasked with figuring out how to respond to others needs or whether to hold back. Bev’s story provides an illustration of how residents have to do interpretive work to make sense of who they are in relation. We can also see the need for reflexive conversations about boundaries or limits to ensure residents aren’t continually put to work in under-resourced care homes.

As societal aging is frequently cited as a reason for restraint in public spending (viewing older adults as “old and dangerous”), the discourse of burdensomeness presents a threat to older people’s sense of entitlement to having even their basic needs met. Furthermore, at the same time, moral, gendered imperatives to care also get in the way of people being able to advocate for more collective forms of care or for care as a shared responsibility. Listening to residents as they try to find the words to limit individual responsibility or to redefine moral agency can help us to appreciate just how much work that takes, even for people who are themselves eligible for 24/7 care. We can see the importance of expanding cultural narratives of care to embrace embodied differences or care needs, help people to talk about their own needs or limits, and to advocate for or imagine more collective ways of organizing care as a shared responsibility (e.g., that extends beyond an individual provider). As many are aware, normative expectations for women to care can have problematic effects or give rise to tenuous relationships in under-resourced contexts. Caring as a “life sentence” can be particularly dangerous for those facing economic and social discrimination rooted in racialization or gender inequity.

Discussion

Taken together, we can see how inadequate public supports and staffing shortages powerfully shape people’s lives in long-term residential care. Not only are paid healthcare workers and unpaid family carers tasked with providing additional, unpaid work to make up for gaps in care, but inadequate public sector support also puts the onus on nursing home residents to pick up the slack. Beyond trying not to be burdens or navigating their own needs, residents are tasked with responding to others’ needs. Although some residents enjoy supporting and connecting with fellow residents, others expressed how burdensome and difficult it was to live alongside others with complex care needs. They reported on deeply felt interpersonal tensions, which were structurally mediated. Inadequate public supports not only give rise to residents’ unpaid work and practical support activities but also set the stage for a range of socially significant work, as they interpret and narrate their lives. Residents need to be able to access circulating narratives or conceptual resources to promote care as a shared, collective responsibility or to help navigate expectations around care and to orient to their own and others’ differences or care needs.

In the context of a neoliberal government that places the onus on individuals to take responsibility for care provision, nursing home residents can be thought of as engaging in a “politics of responsibility” (Thörn & Svenberg, 2016), as they variously take on, negotiate and rethink dominant moral, gendered expectations to care for others. The fact that this work can be such a slog, and can involve such an incredible amount of interpretive and rhetorical work, as residents struggle to even broach the topic, speaks to the necessity of rethinking gendered care ethics—that place the onus on individuals, both in nursing homes and in aging communities more broadly. Although Diamond, writing in 1983, and other long-term care scholars at times maintain moral positions in expressing wanting to be able to care more or to provide relational care (such as in framing walking away or not taking individual responsibility for care as consistent with the logic of capitalist medicine), residents’ stories seem to push us further. Exposed to the 24/7 care needs of others, and to limits in conditions (including embodied ones) to pull off oft-moralized care practices, residents develop practical and interpretive strategies to negotiate individually-assigned care-related responsibilities. Their stories highlight the importance of rethinking individualized understandings of care, demanding responsibility at political levels, and organizing care as a shared, collective responsibility (see also Klostermann, 2021).

Concluding Remarks

This article elaborates on how approaches from the arts, humanities, and interpretive feminist sociology can support multilayered readings and situated, reflexive engagements with long-term care. As we explored, conceptual developments in feminist theory and in the contemporary art world come with invitations to (1) learn from older adults as storytellers and knowledge producers; (2) explicate social relations and imaginaries; (3) reflect on one’s own active participation in social relations; and (4) contribute to making new stories, meanings, and relations. A story-rich approach can support with orienting to nursing homes as sociocultural and political sites while recognizing both that the social representations of care and aging that we bring forth matter, and that we need conditions to pull things off.

Drawing on ethnographic research, this article traced how residents navigate, negotiate and make sense of their own and others’ care needs, including by doing unpaid care work for others, in the context of privatization and late neoliberalism. The stories we explored had real stakes for people’s lives. Conditions of work, along with circulating narratives about care, aging, and disability, set the stage for residents’ practices, as well as their critical insights and jokes. As political actors engaged in a politics of responsibility, the onus is on individual residents to agentively and creatively negotiate meanings and configurations of care—that is, to creatively get their care needs met such as by seeking the support of other residents or to step in to provide care to others, and to make sense of challenging situations or circumstances. With their on-the-ground experiences and knowledge of care, and their creative and critical potential, residents intervene in the “cultural politics of care”—negotiating contradictions and complexities, while finding ways to rethink and reshape relationships. We can learn from Bev and others about how to live with the tension of unmet care needs in broader contexts of social neglect, and about how to rethink care-related responsibilities.

Funding

This work was supported by a Social Sciences and Humanities Research Council (SSHRC) postdoctoral fellowship and by a SSHRC Insight Grant.

Conflict of Interest

None.

Data Availability

The data, analytic methods, or materials presented in this study are not currently available to other researchers for replication purposes, nor has this study been preregistered.

Acknowledgments

Many thanks to Pat Armstrong, Liz Lloyd, and Taylor Winfield for feedback on earlier versions of parts of this paper. Thanks also to reviewers and special issue editors at The Gerontologist for their generous and astute comments that helped me to focus my argument.