Care work, social bonds and the resident who said “no”: situating residents’ embodied practices and possibilities

Written by a researcher on our team, the fieldnote above captures one of many examples of a resident asking for support, and of other residents stepping in to notice and respond to that person’s needs. ‘Residents care for each other in meaningful ways that make them feel good’ is how the researcher quoted earlier put it. As we documented in our research, some residents mentioned finding meaning in supporting others, yet others talked about struggling to set limits on the care they provided. As Glenn (2010) writes, care work can involve a range of ordinary work related to providing direct (physical and emotional) support for a person, maintaining physical surroundings (such as by cleaning up) and fostering relationships and networks. Like care workers in a study by Baines et al (2020), residents recreate ‘social bonds … in various forms and iterations’ and ‘reweave[e] the social fabric through care and relationship’ despite austerity and other life challenges. They engage in care activities and in activities to sustain relationships.

There was a sense of ease, vitality and even joy, as they riffed and responded to one another. This was just one example of a resident extending care to another resident and her family member. It was also an example that illustrates how relationships are not static; they change over time, including with regards to residents’ health, family circumstances and social context (Keefe and Fancey, 2000). While some examples were easy to write about, reading them alongside other stories residents told (reproduced below) reveals complexities and contradictions in residents’ care work and social glue activities.

“Oh yes, if they need help, I’ll – I’ll do it,” Bev, a resident in her eighties, said. She took a lot of care to position herself as a caring person. When asked for an example of how she supported other residents, she said, “Oh, like they can’t seem to walk too far, so you take their arm and sit them down”. While Bev presented herself as someone who would willingly and gladly offer to help others, she also mentioned she had 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,” she seemed to distinguish between supporting someone voluntarily and on her own terms, and having it seen as her “job”. While she didn’t elaborate, her story had me wondering 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”. A point made by Weirsma and Dupuis (2010, p 285) – that residents often learn that they are ‘not the only ones with care needs’ – would perhaps seem like an understatement from Bev’s perspective, as it wasn’t just that she was struggling to get her own needs met, but that she was also tasked with negotiating the needs of others. Her account also speaks to the changing boundaries between tasks that seem meaningful or nourishing and those that seem burdensome or oppressive.

The support that Bev and other residents provide (or decide whether to provide or not) is organisationally mediated. Low staffing levels leave gaps in care, with resident care needs which can then either be left unmet or filled by unpaid work. When filled by the unpaid care work of other residents who are living in the facility and seemingly always on hand, those same needs can then result in tensions or in dilemmas residents have to negotiate around whether or when to set limits or say no. Depending on how paid work is organised, managed and staffed, unpaid work might become necessary, which gives rise at times to deeply felt interpersonal negotiations. If there had been more paid staff on the floor, perhaps Bev wouldn’t have been put in a situation where she’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 helped 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? I’d help them if they wanted me. Sometimes you’re told mind your own business”. 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 she had once worked in housekeeping, she wasn’t being approached to help with that work. “No, I’m out of that,” Bev said, laughing. What was also striking to me 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 with the statement “I’d help them if they wanted me”. Circulating narratives of ‘care’ that link caring about someone with providing direct care for someone were apparent in her account. Women residents who talked about how their lives had been defined by caring for others or by volunteering were tasked with figuring out how to live or whether to hold back.

A younger resident, Wally, also told stories that helped to illustrate how the care and social glue activities he engaged in were socially organised. Supporting others was a source of pride for Wally, who had moved into the care home after living in a psychiatric facility for a couple of decades. He introduced himself to researchers on our team as a community builder and mentioned that he had been “blessed with a really good life” and that he wanted to be “able to make a contribution to other people”. As I spoke to him while he was pedalling on an exercise bike, he also put a value on staying healthy, noting that he was trying to improve his physical fitness and memory. “I try and rewatch Jeopardy to improve my mind,” he said. When asked what changes he’d like to see in the care home where he lived, he noted that he would like to have “all the staff wear their name tags out not in” so that he could “try to remember everybody’s name”, He said, “It’s not so much my insecurity that I don’t know their names; it’s the fact that I just wanna respect them”. He expressed how important it was for him to connect with and invest in others. “Sometimes it’s as simple as saying ‘Hi’,” Wally explained. In speaking of trying to help staff, he said, “When I can, I try to take dishes over and garbage and things like that and give it to them to deal with”. When Wally was asked whether staff were happy when he took dishes over, whether they appreciated the help, he said, “Yeah. Oh yeah, well, I did it once and it was OK. I did it twice, and I nearly dropped it. Enough of that! [laughs] Don’t let me drop dishes, that’s for sure”. While it was unclear whether by “Enough of that”, he meant that he was asked to stop carrying his dishes up, our interviews with staff confirmed that they often needed to oversee or set limits on residents “helping out”.

Staff play a role in facilitating, overseeing and limiting residents’ contributions (see Chapter 2). ‘Allie’, a recreation therapist, mentioned that she put thought into helping residents contribute to the running of recreational programmes and life in the care home. Speaking of an exercise class, she said, “There’s one lady who gets up and helps me pass out the weights”. She also mentioned others who helped to set up and clean up for events. She said, “When we have opportunity for set up for like parties and stuff, we’ll bring some people out to help set the tables”. Part of what Allie elaborated on was how much work was involved on her part to discern who could contribute and in what ways. Allie said, “When I bring a new person into programming, I try and sit them near someone who would be interested in talking to them, and introduce them”. Sandra, another recreational therapist, explained, “[Y]ou know who to sit a newer person with for sure!” They took care to observe residents and to oversee residents’ care and social glue practices, which could only happen over time as staff got to know others. All of this illustrates the importance of continuity, as getting to know the residents and supporting them takes time.

Staff also talked about monitoring and setting limits on residents’ contributions, such as when they had concerns about health, safety and general well-being or when they observed tensions between some residents. Such a finding is supported by research that found staff focused on issues of safety and risk (Weirsma, 2010). In her work as a recreational therapist, Allie stated she tried “not to let [residents] touch the baking too much” as she was “concerned about health and hygiene”. She mentioned that she monitored residents’ contributions to ensure there was “consent” and a “conversation” such as with residents pushing others around in wheelchairs. As she said, “If the resident’s not looking distressed that’s being pushed around, then it’s fine, but, you know, sometimes you have to get involved. [I’ll be] like, ‘Oh no, no, leave her alone, she’s happy where she is’”. Allie also referenced past conflicts that had led her to limit some residents’ participation in certain tasks. For instance, she stopped inviting a woman resident to help set up “who used to be very much in charge of everything” and would “boss around” volunteers and staff, “telling [them] how to do it and that [they’re] doing it wrong”. As Allie said, “[L]ike the tables were in the wrong spot, the chairs were in the wrong spot, this is not how you set the table”. She told another story about a resident who came to “help them decorate” but then stole their “decorations and [kept] them in his room”. “And I said, ‘No, go away. You can’t come in here’”. So, while staff often expressed ideals about having “residents at the front” (as one director of nursing put it), they weren’t afraid to hold particular/individual residents accountable or to limit some contributions to support collective interests. This too took work and shows how paid work impacts on residents’ practices and relationships.

At times it sounded as though staff were humouring residents (such as when Allie noted that some residents “think they’re helping, [but] they’re not really helping” or when a director of nursing talked about a resident who organised the desks of staff members, and mentioned that it “was even funnier” when the resident later came back to check to see if her desk was still organised). Yet, part of what staff put on the record was that they encouraged residents’ participation in care, as “it gives them something to do and something meaningful” (as Allie put it). More than “letting” residents care just for fun, this work was often about providing a sense of meaning and community. Further, Allie did give examples of help from residents that was very much welcome and did seem to lighten the load of paid workers such as in speaking of residents escorting or “portering” others down the halls or of a resident who would get started on doing dishes while Allie was baking. As she said, one woman “starts washing the dishes and I don’t even have to wash the dishes after”.

Further calling attention to social relations and meanings of disability and care, staff and residents also elaborated on how residents’ complex needs shaped their own and others’ practices, relationships and understandings. In speaking of residents who were easier to sit with, Sandra, another recreational therapist, mentioned that most residents weren’t in a position to “take [others] under [their] wing” or “show [them] around”. As she said, “there’s so many people who don’t have that capability as much any more. … There’s some people who certainly could. … But not as many as I’d like”. This was often something residents also called attention to. Doreen, a resident in her nineties, indicated that she got along well with others, before noting, “Mind you, I don’t bother with a lot of them because they’ve got Alzheimer’s and dementia and so on”. While she added that she had “hundreds of friends” outside of the facility”, she said, “I don’t have a lot of friends in here because you can’t have, there’s so much Alzheimer’s and dementia and so on”. Doreen’s point about how residents’ care needs and mental health and health diagnoses shape the quality or nature of relationships speaks to the changing resident populations noted earlier (Giosa et al, 2014). There are clear links to social policies or inadequate public sector support for care that see residents entering care later in life and with higher care needs.

With an “um” and an “uh”, and with her worries about sounding conceited, I was struck by her lack of access to critical discourses or circulating narratives that would invite more expansive ways of living with and orienting to disability or “bad” health, for example by regarding them as sites of joy, meaning-making, relationality or critical and creative potential. As Chivers’ (2013, 2021) work underscores, circulating narratives of care, aging and disability are significant and affect late life relationships.

Taken together, residents’ practices (such as to ask for care, care for themselves and others or make sense of their own or others’ care needs) are shaped through inadequate public sector services and through circulating narratives of care, aging and disability. While the issues of staff shortages or of working short are clear from workers’ accounts of bigger workloads and more residents to support with more complex needs, and are clear in that family carers are often called on to provide more care, they are also evident in examples of residents making sense of and negotiating complexities of congregate care. Their stories highlight the importance of residents having choices in the care they receive, and the care they provide, which is about having adequate publicly provided paid care. Ensuring care is maintained as a collective responsibility and provided by the state (as is the case in Norway and Sweden) would take the pressure off residents and lessen tensions. Relatedly, there is a need for alternative storylines, scripts or circulating narratives to help people with orienting to care and disability, and with navigating, negotiating and expressing the complexities of their everyday lives.

Concluding remarks

Drawing on ethnographic research conducted in three Ontario-based nursing homes, this chapter reflected on the ‘right (not) to care’ through a sociological analysis of residents’ practices and relationships, as they are socially and organisationally mediated. My focus was on how residents foster relationships and negotiate their own and others’ care needs, including by doing unpaid care work for others, in the context of privatisation and late neoliberalism. We traced residents’ practices, making links to how staff and others play a role in facilitating and limiting residents’ contributions. Low funding and low staffing levels leave gaps in care, care work undone and care needs ‘unmet’ or needing to be filled by unpaid labour. These conditions, along with circulating narratives about care needs or disability, set the stage for residents’ unpaid care, social glue and boundary-setting practices, as well as their critical insights and jokes. As we’ve explored, practices, relations and meanings of ‘care’ change over time and are actively negotiated. That which is meaningful, joyful or consensual can morph into something burdensome, oppressive and constraining.

The boundaries between paid and unpaid work are boundaries that nursing home residents actively negotiate. The onus is on individual residents to creatively get their care needs met such as by seeking out the support of other residents or stepping in to provide care to others. ‘Unmet’ care needs can give rise to tensions that need to be recognised and handled. Not only do staff and family carers ‘pick up the slack’ at homes stretched thin, residents also put time, energy and effort into navigating these relations. This unpaid work not only takes time on their part, but also involves coordinated work from paid and unpaid carers, who need the time and conditions to be able to notice, respond to and support residents in engaging in meaningful ways. With their on-the-ground experiences and knowledge of care, and their creative and critical potential, residents negotiate meanings and relations of care and disability, finding ways to respond to their own and others’ care needs, and to build or rethink relationships.