7 Participants were forty-four informal caregivers of older adults aging in place in New Brunswick. They were recruited via advertisements in flyers, community newsletters, and social media (Facebook post). Twenty-seven were Anglophone and seventeen were Francophone, ranging in age from thirty to eighty-nine. Most participants were women (37), and participants were evenly distributed between living in urban (23) and rural (21) locations. Participants were recruited from across the province and represent a wide range in terms of income levels (from $5,000 to over $150,000/year) and educational background (some high school to graduate degrees).

8 Most participants described being a primary caregiver for one individual (28), with the remaining caring for two (11) or more (5) individuals. Participants provided care for parents (28), spouses (11), inlaws (5), siblings (4), as well as other relatives including cousins, aunts, and sisters-in-law. Participants cared for individuals with a variety of health conditions including dementia (19), cancer (12), cardiac disease (8), macular degeneration or blindness (6), post-operative complications (6), mental illness (5), stroke (4), Parkinson’s (2), renal failure (2), and muscular dystrophy (1). Of course, many care recipients experienced multiple health conditions (e.g., cancer and dementia) that also overlapped with a host of additional conditions such as diabetes, arthritis, physical immobility, pneumonia, vertigo, incontinence, difficulties with eating, and frailty. Most participants described providing intense levels of care (e.g., feeding, bathing, and administering medical treatments that ranged from medication to at-home dialysis). Many participants were also working while providing care (20), while some were retired (23), and one was unemployed. All participants described providing care in the home (either their own home or the home of the care recipient) at some point, with many also relating receiving homecare support and/or transitioning to residential care.

9 After being fully informed about the nature and purpose of the study, participants were interviewed in a location of their choice (e.g., their homes or an office on campus). Interviews were conducted between 2016 and 2020, with the last one taking place just before the COVID-19 lockdown in March. Interviews were handled in either English or French, then audio-recorded and transcribed verbatim. Interview recordings and transcripts were subsequently analyzed in the language in which they were spoken, and both English and French quotes are authentically presented in this paper. Analysis was conducted using the Psycho-Social Ethnography of the Commonplace Methodology (P-SEC; Gouliquer and Poulin). PSEC is an interdisciplinary qualitative approach developed to examine the sociological and psychological worlds of marginalized groups. It has been successfully used to investigate the experiences of various groups, including LGBT soldiers (Poulin et al., “Violating Gender Norms in the Canadian Military…”), military gay servicewomen and their partners (Gouliquer and Poulin); women firefighters (Poulin et al., “Pompières…”); women correctional officers (Burdett et al.), and older adults living at home (Gouliquer et al.). Its theoretical pillars include feminist standpoint epistemology (Harding), institutional ethnography (Smith 1987, 2005), and schema theory (e.g., Beals; Bem). P-SEC represents a structured approach to explore the complex interplay between the social, organizational, and political contexts of people’s lives, their psychological experiences, and their resilience.

10 Analysis began with reading and rereading transcripts while listening to audio recordings. To make the data set manageable, transcripts were first coded into recurring topics and the current analysis began with an exploration of all codes related to participants’ interactions with the system (homecare, hospitals, doctors, social workers, long-term care, etc.). These codes were then analyzed together according to the four stages of a P-SEC analysis. First, we conducted a thematic analysis of the data (Braun and Clark, 2006, 2013). Second, we identified the “organizational moment,” which is an ordinary, everyday event, situation, or circumstance that arises at the intersection of the political and the personal. Organizational moments are borne out of institutional practices, policies, rules, or regulations that serve the needs of organizations, but they structure and complicate the lives of individuals who must operate within their confines (Gouliquer and Poulin). Third, we identified and defined the complications for participants that resulted from the organizational moment. Fourth, we analyzed the data for the cognitive and behavioural coping strategies that participants employed to deal with the organizational moment. Finally, we are mobilizing the results of this study for social change, which includes the production of this open-access article. In conducting research from the standpoint of those providing informal care on the ground and learning from their experiences, a central goal of this research is to develop policy recommendations that will be most beneficial to those directly affected.

11 A central and defining element of the organizational moment—New Brunswick’s approach to caring for older adults—was the disjointed, opaque, and confusing system participants had to navigate. In fact, this is not one system but an agglomeration of several overlapping systems, spanning different governmental divisions (notably, the Departments of Health and Social Development), and various public and private services. As a result, people did not know where to turn for help. As Isabella said, “Les gens ne savent pas où aller frapper” [People don’t know which door to knock on]. The following extracts exemplify participants’ struggles in navigating the system:

12 Participants expressed particular confusion about all the different levels of long-term care. In New Brunswick, long-term care is fragmented into special care homes (Level 2) for those needing low to moderate degrees of care, and nursing homes (Level 3A) for those requiring full-time nursing care. These are further subdivided into general care (Level 3G), memory care (Level 3B), and care for those with more complex needs (Level 4). These are privately owned and operated but inspected and licensed by the Department of Social Development. Not surprisingly, many struggled to understand the system. As David said, “[I] wasn’t really sure what the difference was between a special care home and a nursing home.” Carolyn, a nurse, described how the language used in the system is “intimidating” and obstructs public understanding. She noted, “People don’t understand.”

13 Several participants were also confused by the evaluation process for long-term care and questioned why assessments are conducted by a social worker at the Department of Social Development. Instead, a number of participants insisted that this role requires medical expertise. Chris exclaimed, “You would think it would come from the doctor,” and Jennifer said, “I don’t know that Social Development is the right person to assess a person’s needs. […] I don’t think that social workers should have to have that call.” Similarly, Denise articulated, “It should be an RN doing the medical assessment. […] It should be someone with special skills who can do the assessment not just the paperwork. And that’s what I find is happening.”

14 New Brunswick’s approach to caring for older adults complicates the lives of participants because it takes time and energy to navigate the system and find services. The disjointed approach to care at the policy level has concrete and negative effects on the lives of older adults and their caregivers. As Margaret’s account above suggests, searching for information and services consumes copious time and energy, which are often in short supply for caregivers. Stephanie’s experience corroborates Margaret’s account: “The advocacy piece is just exhausting. […] I found it was really like a second job.” She described eventually having to leave her job to be able to offer full-time care for her mother, who had cancer. Lucienne, who was seventy-five years old at the time of the interview, described regularly spending full days trying to track down supports for her ailing cousin who lived with her:

15 Compounding this complication and reflecting the disjointedness in how care is organized in New Brunswick was that participants very often received inconsistent information from different sources. For instance, Chris described receiving contradictory information from different long-term care homes: “You go into these nursing homes, one group tells you one thing, another group tells you something else you know, and you’re never getting—you go to four homes, you almost get like four different answers […] and then you’re lost.” (Chris)

16 Tracy also expressed frustration with the fragmentation in the system and its consequences for the care that her ninety-nine-year-old mother received. When Tracy’s mother was discharged from the hospital, she was eligible for short-term services under the Extra-Mural Program, which is managed by Medavie Health Services New Brunswick. Through this program, Tracy arranged to have homecare services, which in turn involved hiring a private agency. Her mother liked the homecare worker and Tracy was grateful for the care her parent received. After several weeks, however, her mother’s file was transferred to the Department of Social Development, and she was told that she had to switch agencies and was no longer able to hire this care worker. She recounted her conversation with her social worker at Social Development as follows:

This poignant excerpt shows the high level of frustration experienced by caregivers and the elders for whom they are responsible while navigating a system organized in a way that seemingly does not make sense. As Tracy’s account illustrates, this disjuncture in the system had serious implications for her mother’s well-being as well as her own. Fragmented systems result in fragmented care. Participants’ accounts make evident that the disjointed, opaque, and confusing way in which the system is organized compounds their care burden by disrupting care, requiring the expense of time and energy, and introducing layers of frustration.

17 Fragmentation was described as a problem across departments, agencies, and services, as well as within the same service. Many participants described homecare services as particularly unreliable. First, they noted the high rate of turnover among paid caregiving staff, resulting in the regular introduction of new people into the home. Marilyn complained that this interruption in care is distressing for her mother. She said: “My mom has social anxiety [...] and so it’s hard to keep changing homemakers on her.” Such disruptions are also hard on caregivers who must scramble to educate incoming staff. Mary and France both described the kind of personalized knowledge and relationship required to provide proper care:

As these accounts highlight, care work is relational. It is not simply about having a person physically present to perform a set of tasks (like a mechanic working on a series of cars). Instead, care requires trust, intimate knowledge, and intimate acts, including dressing, bathing, and toileting. In short, good relationships are required for good care.

18 Also challenging was the common problem of having homecare workers simply miss scheduled shifts, with little or no warning. This was a frequent complaint across the interviews. As Janet described, “Maybe they’ll come or maybe they won’t come. Maybe they won’t call! So, there are a lot of problems with the homecare providers.” Jennifer recounted extensive problems with her mother’s homecare agency who routinely cancelled shifts at the last minute:

Jennifer described her attempts to maintain her full-time job while juggling the constant cancellations as a “complete nightmare” that took a significant toll on her health. To add insult to injury, Jennifer, Bernard, and many others complained about the lack of accountability of private homecare agencies and the government that funds them. In particular, participants complained that homecare agencies were being paid for services that were never rendered:

Chris described being “infuriated” by the constant cancellations and the fact that his mother had to continue to pay for services not rendered:

Like Chris, Diane talked about confronting the homecare agency that billed her for hours she did not receive. Diane described her incredulous and angry response to being shown signed timecards in her father’s name:

19 In sum, participants described significant challenges in locating and securing good care as a function of the disjointed and confusing maze that makes up how care is officially organized in New Brunswick. Participants’ accounts highlight a fragmentation of services spanning numerous departments and agencies that left gaps in care. They also noted issues of accountability by private agencies contracted by the government to provide services. Before continuing to explore the challenges that they faced, we should also highlight that some participants did report finding good care and that this made all the difference.

20 Naomie described being fortunate to have found wonderful care staff to help look after her ninety-four-year-old mother. She said: “J’ai des bonnes femmes, j’suis chanceuse, j’ai vraiment des bonnes femmes.” [I have good women, I am lucky, I really have good women.] Along with her two sisters, and five homecare workers, Naomie and her supporting team ensure that her mother receives around-the-clock care. Naomie further noted that having care workers who are kind and caring with her mother gives her peace of mind: “J’ai des femmes qui la gâtent, qui sont bonnes avec elle. Ça fait que […] je n’ai pas besoin de m’inquiéter.” [I have women who spoil her, who are good with her. That means that … I do not need to worry.]

21 Margaret also noted the importance of good relationships for quality care. She hired a woman to stay with her mother while she was in the hospital awaiting placement in long-term care. She said that her mother was “attached” to this woman and that they “get along very well.” Many participants talked about the critical difference that caring staff made in their lives and the lives of those for whom they care. Doctors, social workers, nurses, homecare workers, and long-term care staff were all described as helpful by being caring, attentive, supportive, and responsive. Moreover, participants’ accounts highlighted that good care also involves skill and the provision of practical support. For Barbara, who cared for her husband with advanced dementia, finding a “good cook” and a “good cleaning lady” who were “very caring and nice” helped significantly to ease her workload.

22 Although many participants found small pockets of help, their talk of the governmental care system was dominated by talk of struggle. Helen, who was eighty-nine years old at the time of the interview, stood out as an exception. She had undertaken palliative care at home for her husband, who died of cancer. Because of his terminal medical condition, he qualified for care under the Extra-Mural Program, which she described in glowing terms:

Helen ended our interview by stating that the reason why she participated in our study was her desire to highlight the value of the Extra-Mural Program. At the time, there were rumours (soon to be verified) that the program would be partially privatized, as Helen mentioned: “I really wanted to talk about Extra-Mural and emphasize that because... I just think... I’ve heard rumours that it could be privatized. Or I don’t know what they’re planning, but if they ever decide they can’t fund it, then that would be really cruel.” As Helen articulated, the provision of consistent and responsive support by a team of experts enabled her to conduct the intense work of caring for her husband at home. Good care was not solely a function of good people but a good system. Her situation comes into sharp relief against the accounts of other participants who recounted story after story of insensitive and indifferent care.

23 Participants voiced several common complaints about their experiences with how care was organized. One disadvantage was having to rely on professionals who did not respond to their questions and calls for help. As Cynthia described: “Trying to get a hold of people, people not calling back, […] that piece was hard.” Judith and Chris both described frustrating attempts to deal with the Department of Social Development to secure long-term care:

France and Gérard also lamented the unresponsive service. France described her social worker as being like a “robot” who answered questions with as minimal effort as possible. Similarly, Gérard characterized his social worker as being on automatic pilot, telling him to fill out forms, but leaving his questions unanswered. Both participants articulated feeling very alone, confused, and frustrated:

24 A lot of participants also complained about the quality of care provided by homecare agencies and their staff. In contrast to those who described securing caring and skilled care, many were surprised and dismayed at the level of service they received, which Judith described as “very, very basic.” Furthermore, participants depicted homecare workers who spent the time watching television or scrolling on their phones. Chris recounted that one worker “fell asleep several times.” When asked what homecare workers did in the home, Jennifer replied: “Sitting. Some of them brought knitting, some of them brought books, some of them had crafts they worked on, some of them just sat and watched TV. She [Mother] was usually in the room with them but a lot of sitting.” Tracy also complained about markedly inattentive care that left her mother frightened: “They would leave my mother in her TV room unattended for hours. And I’d come home and the girl that was in charge […] would be at the kitchen table with her laptop doing her office work. And my mother told me ‘I was afraid.’ She said, ‘I thought I was here by myself.’” Participants often contrasted this level of care with what they had hoped to receive—active and engaged help in the home. As a paraplegic in a wheelchair, Katherine’s father needed a lot of help to remain living at home. They had hoped to get help with getting groceries, running errands, paying bills, and house cleaning, but each request was refused by the homecare agency that they hired. She recounted her father’s frustration:

Many participants connected such poor-quality homecare to the low educational requirements and pay associated with this work. Denise said, “They’re sitters is all they are. They’re sitters! […] And they get paid for what they do. And that’s all they do. There’s no education.” Similarly, Jennifer stated: “I don’t know about standardized training. I don’t know what they have to be a homecare worker, but most times it was glorified babysitting.”

25 Participants also expressed significant concerns about the quality of care in nursing homes. For instance, when asked if she had considered long-term care for her mother-in-law, Mary responded that it would be her “death sentence,” as they would not be able to spend the hours it takes to get her to eat enough to survive. Chris, too, feared for his mother: “If you have such deep love for your mum, you’re almost scared of putting her into the system.” Participants expressed concerns that nursing homes were “short-staffed” (Tracy) and workers were “stressed out and overloaded” (Amy). Cantin was a former employee in a nursing home. He linked these staffing issues to compensation, stating that the government was dreaming if it thought more people would want this kind of hard work for poor pay: “Il y a de moins en moins d’employés, puis ils [les gouvernements] sont en train de rêver là; ils font des promesses, mais ils [les employés] ne sont pas payés.” [There are fewer and fewer workers and then they (the governments) are in the process of dreaming there; they make promises, but they (the employees) are not paid.] Notably, care recipients also shared these fears. Noémie reported that her mother refused to go to a nursing home since she was well aware of the dangers: “Elle a écouté les nouvelles, elle connaît les nouvelles.” [She heard the news, she is aware of the news.] Since the time of these interviews, however, the news about long-term care in Canada has only gotten worse as COVID-19 swept through.

26 Although perhaps not intentional, New Brunswick’s approach to caring for older adults appears to remain in place because it effectively benefits the system by preventing the public from fully accessing services. That is, the fragmented and opaque organization of care discourages and deflects people away from an already overtaxed system, thereby reducing costs (at least in the short term). As a result, informal caregivers must shoulder the work themselves or pay for it out-of-pocket. This can be understood as a form of “privatization by stealth” (Macarov 71) in which cumbersome bureaucratic processes discourage the use of public services.

27 In the next sections, we outline the myriad ways in which caregivers attempted to make sense of and cope with the complications resulting from the organizational moment—New Brunswick’s approach to caring for older adults.

28 Given the multiple and intersecting challenges they faced, participants talked about having to constantly “fight” the system. Janet said, “You have to fight for what you want. It’s not easy!,” while Chris lamented, “I shouldn’t have to fight through the system like I was.” Similarly, Anne-Marie talked about having to go to battle to get care for her mother: “Je me suis battue pour maman” [I fought for my mom]. This ongoing battle requires energy, stamina, and tenacity. As Katherine said, “Il faut être tenace” [one must be tenacious]. As Stephanie articulated, however, remaining in “bulldog” mode is also taxing: “The advocacy piece is just exhausting. [… That] was my experience, like I’m worrying about mom’s health and then, I still have to be on and fighting all the time to make sure she’s getting good care.” Katherine described this constant struggle: “Mais c’est tout comme ça: à la graine. À la graine, à la graine. Je te dis, c’était toujours des grands débats pour des petites victoires.” [But it’s all like that: … I am telling you, it was always great debates for small triumphs.] Thus, in addition to providing care for an older adult, participants were in the strange and difficult position of having to fight for care.

29 Many participants who talked about “fighting” also talked about “giving up.” For instance, after recounting having to fight the homecare agency to pay back lost hours, Chris stated that he gave up when the care worker continued to miss shifts: “It just came to a point where I didn’t want to fight anymore” (Chris). Isabella expressed the futility of constantly trying to fight for care: “Bien, on laisse pas tomber les bras, mais on donne des coups d’épée dans un océan.” [Well, one does not stop fighting, it’s like swinging a sword in the ocean.] Similarly, José stated that the constant battle to find help is simply not possible for everyone, and at a certain point, people just give up:

Echoing José’s account, Émile also described being forced to pick his battles: “On choisit nos batailles. Mais des fois, c’est désolant.” [We choose our battles. But sometimes it’s sad.] Émile said that he had to give up the fight in order to preserve his energy just to survive: “J’ai-tu cette énergie-là moi, non. J’ai juste assez d’énergie pour travailler puis prendre soin de ma famille, puis de survivre.” [Do I have that energy? No. I have just enough energy to work, then take care of my family, then survive.]

30 Despite their anger and dissatisfaction, many participants talked about holding their silence for fear of retribution. Participants were afraid to jeopardize the governmental support they did receive, even if there were significant problems. France described having to walk on eggshells with her mother-in-law’s social worker whom she described as terrible: “On marche sur des œufs là avec elle.” [We walk on eggshells there with her.] She worried that asking for a different social worker would mark her as a difficult client, and potentially force more delays in securing supports:

31 Several participants also talked about holding their tongues with homecare workers. Tracy described multiple instances of poor care (including the homecare worker leaving her mother alone for hours and providing poor physical care), but she was too afraid of retribution if she complained every time. She said: “You have to treat these homecare workers with kid gloves because if you offend them, then, they hold that against you.” Like Tracy, Jennifer lived rurally and pointed to this geographic isolation as compounding the need to remain silent. She said: “You’re scared to say anything because there’s no other option anyway.” She elaborated by comparing her situation to that of people in city centres:

32 Several participants had professional experience in the home and health care systems as nurses, nursing home staff, and personal support workers. While they also struggled in many ways, they acknowledged their advantage. For instance, Denise described how her insider knowledge enabled her to arrange for her mother to move into a nursing home quickly: “I moved fast because I knew who to call, what to get, what was needed. I knew the list. I knew the website. I knew the social worker.” Such expertise not only enabled these participants to navigate the systems more efficiently, but it also provided them with a better understanding of what is involved in care at home. As Donna said:

33 Monique also spoke to the high degree of training required to provide care at home. She emphasized that most people are ill-equipped to take on this extensive work: “Ce n’est pas les gens ordinaires qui peuvent faire ça; ça, je peux vous le dire. C’est très difficile, c’est demandant. Puis, que le gouvernement n’essaye pas de faire passer ça à tout le monde parce qu’ils vont avoir des abus encore pires que dans les foyers.” [Ordinary people can’t do that; that, I can tell you. It’s very difficult, it’s demanding. Then, that the government does not try to pass this on to everyone because they are going to have even worse abuse than in LTC.] She elaborated by giving an example: “Admettons que je n’ai aucune notion en nursing et que je veux prendre soin de ma sœur, je ne peux pas! Puis ce ne serait pas recommandable à tout l’monde non plus parce que psychologiquement, physiquement c’est dur. Moi, je ne recommanderais pas ça à personne.” [Let’s say I have no knowledge of nursing and want to take care of my sister, I can’t! Then it wouldn’t be advisable to everyone either because psychologically, physically it’s hard. I wouldn’t recommend this to anyone.] Although all participants described care work as stressful, those with professional training were at a distinct advantage, and several described being called on to share their knowledge with other caregivers. For example, Diane said, “I don’t know how many of my friends call me up and say, ‘Look my mom’s got to go in a nursing home’ or ‘My father fell and broke his leg. Where can we get this? What can we do?’”

34 Participants without professional care backgrounds frequently recounted relying on the advice of friends and family members who were knowledgeable in that area. Angela noted that there were several health professionals in her family who offered invaluable support in her mother’s care. Continuing the battle metaphor described earlier, she said that having this well-educated team enabled her to be “better armed going against the health care system.” David also spoke about needing to harness his professional connections to advocate for his wife who had early-onset dementia. He lamented: “That’s the sad thing in New Brunswick, that you continuously have to fall back on who you know and […] your personal contacts, who you know. That’s very sad, I think.” Speaking to this sadness, many participants, like Carolyn and Marilyn, described fearing for New Brunswickers who have no insider resources to draw upon: “I pity these poor families that have no starting point at all” (Carolyn); “I worry about all the other families that don’t know how to navigate the system” (Marilyn). In essence, these participants described how New Brunswick’s care services are organized into a two-tiered care system, in which better services are available to those with more resources.

35 As a result of being unable to navigate the system and secure proper support, many informal caregivers and their families end up in a state of crisis (“on était rendus en crise là; on ne savait plus quoi faire” [we had reached a crisis there; we did not know what to do] (France). As a result, several resorted to going to the emergency room for help. For instance, when Denise could no longer manage her mother’s care, she said calling the ambulance was her last resort: “That’s enough. So, I called the ambulance. It was the only way.” Similarly, Barbara said: “I said, ‘Call an ambulance, we’ll take her to the hospital.’ Because that was the only answer I had at that point when you can’t manage it anymore.” However, as Stephanie asserted, “It shouldn’t take a crisis to get timely access to service.”

36 Chris’s mother, who had advanced dementia, did not have a family physician and this significantly exacerbated the challenge of managing her care. Chris described lacking direction and having to rely on the emergency room throughout the course of her decline: “I just went in. I said, ‘My family’s falling apart. I don’t know what to do.’” However, despite going to the emergency room repeatedly, he could not find the help he so desperately needed:

Notably, several of Chris’s friends suggested that he should leave his mother at the hospital to secure services. He said: “A lot of people were saying, ‘If you don’t hear back from the government, drop her off, and then you’ll force the government’s hand to do something.’” Although no one in the study resorted to this coping strategy, it was a theme articulated across the interviews and the appearance of this common knowledge strategy reflects the level of crisis in senior care in the province. In the final section, we explore central recommendations that participants articulated for fixing this broken system.

37 Participants expressed the need for help navigating the disjointed, opaque, and confusing systems. Betty said, “I don’t know if it’s only New Brunswick, but you really are on your own to find out what’s out there.” Participants repeatedly asked for professional navigation services to help them find their way through the process. Susan reported that her “biggest need is [for] an adviser.” Similarly, Isabella stated that having a phone line for informal caregivers would be a great help: “Avoir une ligne directe, ça nous aiderait énormément.” Marilyn echoed this sentiment, recommending: “The government could think about having like telecare for ‘How do I navigate the system?’”

38 There are three initiatives in the province under the Department of Social Development that appear to meet this demand: (1) a website (https://socialsupportsnb.ca/en/); (2) a 1-800 phone line; and (3) the “Home First” program, which offers a one-time visit with seniors to provide information. Notably, participants had either not heard of these services or not found them useful (the website was not available at the time of the interviews). What is lacking from current offerings is extensive and ongoing personalized navigational support. Gérard cautioned that any such service would have to distinguish between government supports that are real and those that are merely window dressing:

In line with Gérard’s comment, it is important to note that many participants needed ongoing “counselling” (Chris) that could respond to their evolving needs. As Jennifer said, one-time consultation is insufficient, as people need help at every step of the way given that conditions and needs change: “There is no one person that you can pick up the phone and say, ‘This is where we are, what’s my next step?’ […] I think there needs to be some administrative body that helps these people go through the system.” Jennifer went on to describe how she also needed someone who could advocate for her, so that she didn’t have to remain silent when her mother received poor-quality care. She specified:

The communication between the social workers and the homecare agencies isn’t adequate either. Like there needs to be somebody that if you’re getting the lack of care that mom got, then I could pick up the phone and call and say, “Can you please on my behalf rattle their chains?” Because oh there were times that I really wanted to go to that [homecare agency] office! But, [I] just didn’t dare. (Jennifer)

39 In sum, participants wanted a knowledgeable, available, and officially designated person who understood their situation, would help make arrangements for the next steps, and could advocate on their behalf through the duration of their care journey. Having someone who could advocate for their loved one’s care could make a tremendous difference for an informal caregiver’s health and well-being. A quotation from Stephanie’s interview sums up what such a publicly funded position could mean: “If we had a system where I could call someone and they took that one little piece off of me? Like maybe I could breathe, maybe I could sleep a whole night through.”

40 Participants emphasized that, contrary to current conceptualizations and pay structures, care work requires skill, training, and education. For example, David outlined the high level of skill and understanding required to provide proper care for a person with dementia:

Here, David rejects the myth that care work is low-skill work. His account goes on to highlight the significant “risk” involved in relegating the critically important work of care to low-paying positions. This concern was shared by several participants, including Cantin: “Si tu n’es pas payé [assez], ce n’est pas le meilleur qui va être engagé. Ça va être celui qui n’a pas d’emploi.” [If you are not paid (enough), it’s not the best person who is going to be hired. It’s going to be the one who does not have a job.] And, as Chris said, most people will avoid the demanding work of providing care when they can make more money at “a call centre.” As Janet explained, the fundamental problem, then, is that care work is undervalued and underpaid: “There are a lot of problems with the homecare providers. And it’s not a highly educated job. Some people just do it because they can’t get anything else. There are only a few people that are really doing it because that’s what they want to do.” Janet further explained, “The problem is you’re putting people in there that have no background in gerontology, no background on how to deal with the elderly.” Accordingly, participants’ accounts suggests that the solution is to re-envision the personal care worker role in a way that it reflects the following: (1) it acknowledges the skill and effort required; (2) it requires specialized training and education; and (3) it compensates appropriately for the work provided.

41 The central challenge underlining participants’ experiences of caregiving was the disjointed and confusing system. Accordingly, participants pointed to the need to streamline the system in a way that mirrored people’s changing care needs (as opposed to organizing it around power structures). Denise described the bureaucratic nightmare she faced in supporting her mother through several hospitalizations (under the purview of the Department of Health), homecare (Department of Health or Social Development, depending on the situation), and nursing home care (Department of Social Development):

David also spoke eloquently about the system’s fragmentation and its consequences for his wife who had early-onset dementia:

To highlight the lack of logic of the current system, David offered an analogy: “You wouldn’t have roads under one department and bridges under another, would you?” He then elaborated:

42 David’s account points to the problems inherent to an organizational structure that extends across different governmental departments and a host of private homecare companies. Although navigation challenges exist in other provinces in which all senior care falls under the same department, participants made clear that the extra bureaucracy of two departments presented additional and unnecessary challenges in their daily lives. While it is no panacea, having one continuum of administration could help reduce gaps in care and accountability that we heard across participants’ interviews.