Capability to care and work: when dual roles intersect

Abstract

Ageing in place is a cost-effective policy solution to eldercare that reflects a dominant positive ageing discourse of choice and independence. It satisfies older people's preference to remain at home and be involved in their community, but depends upon the provision of care and support for frail elders, particularly the oldest-old, who require assistance to achieve these goals. The traditional provision of unpaid eldercare by female relatives is changing as women are increasingly working outside the home, and they have to choose between, or manage, dual roles of caregiving and paid work. Negative effects on health, paid employment, and finances are associated with the intersection of eldercare and employment. Solutions involve reducing or relinquishing paid employment, which would have financial, social, physical, and emotional ramifications in the future. However, being able to successfully accommodate both roles provides a sense of satisfaction and fulfilment. To understand the complexity of managing the tension between work and eldercare requires a detailed analysis of unpaid caregivers’ daily lives. This paper presents findings about eldercare provision and paid work, derived from two qualitative studies that used a participatory methodology for an in-depth exploration of caregivers’ health. The participants’ stories demonstrate that rather than reflecting on access to a range of options, caregivers’ choices are constrained, and involve trading work and other capabilities for the capability to care. Providing care for a loved elder was the first priority, followed by paid work. Having the capability to maintain a healthy and balanced life was the caregivers’ lowest priority. Unpaid informal care has benefits for elders, and it is a valued emotional relationship for caregivers; however, future social policy should address the difficulties that caregiving creates in people's lives along with focusing on the benefits that such care offers in terms of positive population ageing.

• Informal caregiving
• eldercare
• employment
• capabilities
• choice

Ageing in place is a preferred response to eldercare (Rolls, Seymour, Froggatt, & Hanratty, 2011). It provides a cost-effective policy solution to housing an ageing population (Sixsmith & Sixsmith, 2008) and reflects a dominant positive ageing discourse of choice and independence (Bebbington, Darton, & Netten, 2001) by satisfying older people's wishes to remain at home and be involved in their community. Ageing in place depends upon the provision of care and support for frail elders, particularly the oldest-old, who need assistance to live at home and remain socially engaged (Barrett, Hale, & Butler, 2014). In the United Kingdom, more than 60% of elders are cared for by unpaid family, friends, and neighbours (Pickard, Wittenberg, Comas-Herrera, King, & Malley, 2012). In previous generations, elders often lived in multi-generational households, and care was provided by female relatives, for example, by stay-at-home wives, daughters, and daughters-in-law (Gross, 2011). However, this traditional solution to eldercare is changing because of shifting social and economic forces. Changing family structures, employment trends, and retirement policies are altering the availability of informal caregivers to provide care (Haberkern, Schmid, Neuberger, & Grignon, 2011).

Current policy objectives simultaneously promote women's workforce participation and the privatisation of care (Bittman, Hill, & Thomson, 2007), therefore many women, who were traditionally available to provide family care, are now working outside the home. Consequently, a growing number of working caregivers have to choose between informal caregiving and paid work, or manage dual roles (Hammer & Neal, 2008). In addition, caregiving responsibilities are often divided between concurrent care for children and elders (Kossek, Lewis, & Hammer, 2010). Previous research has identified difficulties associated with combining eldercare and employment (e.g. Calvano, 2013; Eldh & Carlsson, 2011), especially when the need to provide care first arises or increases (Spiess & Schneider, 2003).

Caregivers at greatest risk for care-related employment consequences are women, men caring for a spouse, those approaching retirement age, those in poorer health, and people spending more time performing care tasks (Fast, Dosman, Lero, & Lucas, 2013). Previous studies of the tension between combining work and family responsibilities have focused more on childcare and caring for adults and children with a disability and less on providing eldercare (Bittman et al., 2007). Consequently, there are fewer workplace initiatives to support care provision for frail elders, despite the demands of eldercare provision, which can be fraught with crises and is potentially more stressful than child care (Koerin, Harrigan, & Secret, 2008).

Three main areas of concern regarding working caregivers have been identified, namely the negative effects on health, paid employment, and finances. Managing multiple responsibilities has physiological and psychological costs, such as depression, anxiety, or burnout (Gordon, Pruchno, Wilson-Genderson, Murphy, & Rose, 2012). Informal caregivers juggling the dual roles of caregiving and paid employment report lethargy, fatigue, lack of concentration, and worry about caring responsibilities while at work (Arksey, 2002), which includes feeling guilty for providing insufficient support to the care recipient (Eldh & Carlsson, 2011). Maintaining these roles is associated with risky health behaviours, such as increased alcohol or drug use, sleep deprivation, inadequate nutrition (Shoptaugh, Visio, & Phelps, 2012), and poorer emotional health (Bookwala & Schulz, 2000). Juggling caregiving with work may cause caregivers to delay their own medical treatment (Conway-Giustra, Crowley, & Gorin, 2002). These factors have long-term implications for caregivers’ health, increasing their susceptibility to physical illness, including hypertension, pulmonary disease, cancer, and cardiovascular disease (Shoptaugh et al., 2012).

The more intense the caregiving demands, the longer the duration, and the fewer the resources at the caregivers’ disposal, the harder it is to combine full-time employment and caregiving responsibilities (Kim, Ingersoll-Dayton, & Kwak, 2013). In order to cope with their dual responsibilities, working caregivers rearrange their work hours, take unpaid leave of absence, or use their annual leave (Barrett et al., 2014). They may choose lower paying or part-time jobs, which reduces their career prospects (Arnsberger & Lum, 2008), leading to difficulty in returning to the workforce (Bourke, 2009). Many older women involved in caring for a spouse or parent are often reluctant to disclose the extent of their care work for fear of discrimination in the workplace (Barrett et al., 2014).

Unpaid caregivers are more likely than the rest of the population to reduce their hours of paid work or withdraw from the labour force altogether (OECD, 2011), and women are more likely than men to give up work in order to care (Ben-Galim & Silim, 2013). The resulting loss of income is significant, having a detrimental effect on earnings that may accumulate over a caregivers’ lifetime, and extend beyond the caregiving period (Bittman et al., 2007). Spouses or partners, who are generally the first to be involved with care provision, may take early retirement, especially if they begin caregiving close to retirement age (Fast et al., 2013), which reduces their financial provision for retirement (Evandrou & Glaser, 2003, 2004). Alternatively, they may have to work beyond retirement age to support a dependent spouse.

While combining caregiving and work may be a struggle, positive effects have been documented when caregivers are able to successfully manage the two roles. Employment provides an income and contributions for future retirement (Evandrou & Glaser, 2003) enabling greater financial security. Employment helps to maintain social networks, which benefits emotional wellbeing (Arksey & Glendinning, 2008) and provides respite from the caring role. Being able to engage in paid work enhances self-esteem and provides opportunity for interaction with workmates, which helps to ease the burden of caregiving (Arksey, 2002). Combining work with caregiving also offers opportunities for personal growth (Saunders, 2010). In this way, paid work can have beneficial effects on caregivers’ physical and emotional health (Pickard, 2004).

Understanding the complexity of managing the tension between work and eldercare requires detailed analysis of the daily lives of informal caregivers for older people. The studies described here aimed to provide an in-depth exploration of how informal caregivers manage the dual roles of paid work and eldercare.

METHOD

Methodology

Understanding what people value and how well they are doing requires rich, contextual information, which involves giving people an opportunity to discuss what they value (Sen, 1985). Therefore, both studies presented here use a participatory methodology to develop knowledge in the context of eldercare. Participatory research facilitates knowledge production with participants that is grounded in their first-hand knowledge of the research topic (Heron & Reason, 1997). The current studies aimed to engage with the participants in “democratic dialogue as co-researchers and as co-subjects” (Heron & Reason, 1997, p. 8). A key characteristic of participatory research is emergent design (Herr & Anderson, 2005), which accords with the hybrid approach (van Ootegem & Spillemaeckers, 2010) used in this study. The first study used an online forum, which was created specifically for the study. Via the forum, caregivers were invited to contribute their thoughts and feelings concerning what they considered important for maintaining their own health while providing eldercare. Results from the first study informed a second study, which focused on the daily lives of informal caregivers for older people. This paper presents findings from both studies regarding the intersection of dual roles: the capability to provide care and the capability to engage in paid employment.

The Capability Approach (CA; Nussbaum, 2007; Sen, 1980) provided the theoretical framework for both studies. The CA is concerned with the freedom people have to lead the type of life they have reason to value (Sen, 1980), and it provides a useful basis for examining health (Venkatapuram, 2011) in terms of how well people can achieve valued activities. Within the CA, capability refers to the freedom people have to achieve outcomes that they value (Alkire, 2005). Consequently, the capability to care describes the ability to engage in caregiving as a valued life path, and the capability to engage in paid employment is the freedom to pursue employment. Nussbaum (2000), p. 244) argues that the CA “provides the best framework within which both to value care and give it its necessary critical scrutiny.” The CA considers people's ability to live well across all spheres of life, scrutinising not only personal characteristics but also the political, social, and economic environment.

STUDY ONE: CARERSVOICESNZ

Participants and procedure

Participants were recruited via the various websites and networks of New Zealand caregiver organisations, caregiver support groups, and organisations associated with the chronic illnesses of old age. To be eligible for the study, they needed to be caring for an older person in the community. Over 4 months, 60 caregivers took part in the forum. To protect their anonymity, the participants were asked not to provide demographic details and to use pseudonyms. However, contextual background details from the participants’ postings revealed ages ranging from late teens through to mid-60s, with only two participants identifying as male. The participants included spouses, daughters, a son, a granddaughter, and non-kin caregivers, and were caring for people with various illnesses associated with ageing, including Alzheimer's disease, Parkinson's disease, heart disease, and cancer. Some of the care recipients had co-morbidities, and several of the caregivers were caring for more than one person.

An online forum, carersvoicesnz, was created specifically for the study, and it provided an opportunity for caregivers, who are often socially isolated, to meet as an online community to facilitate the collective sharing of experiences via a set of discussion boards. The evolving, anonymous discussions aimed to meet Sen's (2004) requirement for democratic process specific to the context of informal eldercare, as well as to ensure that the study results would be meaningful and relevant to informal caregivers.

The participants were invited to comment on what was important to them. The questions posed in the forum were informed by the caregiving literature and reflected the concepts of opportunity, freedom, and agency from the capability literature. The forum facilitated the emergence of unanticipated factors and accorded the caregivers an equal voice in the process of co-operative inquiry (Heron & Reason, 1997). The University Human Ethics Committee approved these procedures.

Analysis

The data were analysed using thematic analysis (Braun & Clarke, 2006), which has the flexibility to be adapted to suit a particular study. The first author read through the data, treating the participants’ comments as descriptive, factual representations of their lives, and coding excerpts relating to the intersection between caregiving and paid work. Relevant excerpts were grouped thematically using codes suggested by previous literature concerned with the intersection of informal eldercare and paid work. The codes and their relationship to the themes described in the findings were discussed and revised among the three authors.

Presentation of results

Excerpts have been reproduced as they were written, with the original spelling and grammatical constructions. This enables readers to evaluate the analysis and the evidence for the claims made; a collaborative reading of the “raw” data facilitates future discussion of the findings (Alkire, 2007). Some of the extracts reproduced below are a compilation of thematically similar comments from different postings by the same caregiver. Separate postings are joined by an ellipsis (…). This does not change the meaning of the excerpts included. The names referred to are pseudonyms.

RESULTS AND DISCUSSION

The following discussion of results is structured around the consequences of deciding to provide informal eldercare for engaging in paid employment. The discussion focuses on trade-offs and constraints that affect caregivers’ freedom to choose other valued capabilities and the resulting implications for their health. The findings from the first study are presented first, and then developed using an example from the second study.

Caring decisions

Emotional attachment informs the decision to provide informal care and also the caregivers’ freedom to make choices that affect other capabilities such as employment options, living arrangements, leisure activities, and health. In this study, the participants regularly described work as something that they had given up because of caregiving. Their primary consideration was to make themselves available to care. Carol, a registered nurse, reduced her hours to care part-time for her mother who was in the terminal phase of cancer:

When she died I resigned from my work to care for my father who has Alzheimer's Disease. He now lives with my husband & myself. We are his full time carers. While it was our choice we have struggled at times (caregiver for her father).

Similarly Rose gave up work to care for her mother:

The day she was discharged I got a call at work to come get her, she had told the staff I was living at her place and would give up work to look after her. So that's what I did (caregiver for her mother).

Jo was between jobs and wanted to do something “more meaningful than paper-shuffling” (female caregiver for her mother).

These caregivers relinquished paid employment in order to care for someone they cared about. In Rose's case the statement, “So that's what I did” suggests that the decision to care is self-evident. Their freedom to choose represents a dichotomy; either they remain employed or they provide unpaid informal care. Earlier in her posting, Rose describes how her mother cared for Rose's children while she worked. A shared history with her mother, and particularly feelings of wanting to give something back, influenced Rose's decision to become a caregiver to her mother, highlighting the relational nature of care and how this affects caregiver's choices regarding employment.

Employment and finances

Although these decisions are described as self-evident, they have considerable on-going effects in a caregiver's life. Dee discusses resigning from her full time job to provide support for elderly parents. Her father had recently passed away, but her mother still requires full time care. Dee says she no longer has “financial peace of mind or freedom to do activities that I'd normally do.” After 9 months of caring for her mother, Jo's savings have run out and her sole income is a government benefit. Rose also relies on a government benefit, as a fulltime caregiver for her mother. Rose has been caring for her mother for the past 3 years. When her mother was discharged from hospital, Rose had just sold her own house and was staying with her mother temporarily. Now that Rose is a beneficiary and dependent upon state support, she can no longer own property because the payment she receives is insufficient to meet mortgage repayments. Rose's decision to become a caregiver to her mother is detrimental to her future financial security. Rose values being able to care for her mother, as much as her mother values receiving her care; however, the value that the state places on this arrangement is less than the minimum wage, which every adult worker is guaranteed. Rose's dependency, created because of her commitment to care for her mother, renders her a “passive recipient of benefit” (Nussbaum, 2011, p. 30). This not only stigmatises Rose but also undermines her dignity and fails to accord to her the respect she deserves as an individual and for her valuable contribution to family and society. The situation of these participants is not unusual, as research shows that informal caregivers often have fewer resources at their disposal to meet their needs (Bittman et al., 2007; Koerin et al., 2008).

Informal caregivers tend to reduce the hours they work, or give up employment altogether, due to the strain of combining both roles (Bittman et al., 2007; Lilly, Laporte, & Coyte, 2007). The social policy response to this has been to find ways to encourage and allow informal caregivers to remain in the workforce while providing care. However, Fine (2012) suggests that a better option would be to support informal caregivers to provide care, followed by assistance with re-employment when the need for care ceases. This solution could also address the financial struggle that caregivers face due to reduced income during the caregiving process. Income significantly decreases as caregiving continues (Bittman et al., 2007) and therefore “the damaging effects of sustained caring responsibilities are also likely to be cumulative” (Bittman et al., 2007, p. 264). Sarah describes cashing in her private superannuation to “buy a decent car which catered for the special needs of my husband and also my dad.” This kind of sacrifice illustrates how the effects of caregiving may continue well into retirement. In Sarah's case, this is likely to have a double effect because women are more likely than men to spend their final years alone with fewer savings due to lower wages and caregiving commitments during their working life (Arnsberger, Lynch, & Li, 2012).

Finding a balance

Many caregivers in this study decided to reduce or leave employment because they were committed to providing care and struggled to manage caring and employment. When they talked about choosing between work and caring, rather than reflecting on access to a range of options, “choices” were narrated in terms of being constrained, trading the capability to care against other valued capabilities. This has implications not only for financial security but also other capabilities that contribute to the participant's overall wellbeing. For example, giving up work reduces a caregiver's opportunities for social participation. Having given up work to care for her husband Sarah says:

I am already starting to feel a little trapped as it is difficult to take him out and when I do he just sits in the car so I go about whatever I am doing in a rush … it takes me twice as long to get us both ready to go—it is worse than putting the grand-kids in their carseats … lol (female caregiver for spouse and father).

Scott's impression is that:

most carers become isolated in about every aspect of life. It is normal to feel resentful, angry, etc. in such situations. Carers sacrifice a lot of personal stuff to do a job that nobody wants to know too much about (male caregiver for his spouse).

Although Kath maintained her employment, she made several sacrifices to her social life so she could continue working:

I went through several stages. First I had to reorganise my life, and give up on few things sports, meeting with friends, as I had to continue working. We could not have survived if I had to quit my job (female caregiver for her spouse).

Remaining in employment can provide balance if it brings fulfilment and refuge. Being able to combine both roles brings a sense of satisfaction (Eldh & Carlsson, 2011). However, having the capability to combine caregiving with employment requires the flexibility not only to juggle caregiving and work but also incorporate other valued activities into their lives, for example, leisure time to socialise and time to exercise. As Kath's story indicates, it is difficult for working caregivers to maintain a healthy work–life balance. Because they are committed to providing care for a loved one, caregivers typically persist in their role until they themselves become unwell, or caregiving ends. Although trade-offs are a key part of informal caregivers’ lives, caregiving is often the last capability to be forsaken; therefore, many caregivers describe the experience of caregiving as a time of putting their lives on hold. For example, “I feel as if my life has been put on hold for the last year and half” (female caregiver for her mother). Rather than attempting to balance the competing elements of their lives, caregivers prioritise caregiving and forgo other aspects of their lives until caregiving ends. Having to trade any valued aspect of life means making a “tragic choice” because whatever choice is made constrains a person's ability to flourish (Nussbaum, 2011, p. 37).

The caregivers’ stories about trading the ability to work in paid employment to maintain caring highlight the extent to which caregivers will subsume their own needs and jeopardise their future financial and physical wellbeing in order to meet their commitment to care. To extend this finding, Study Two uses the findings from a second broader study about the role of emotions in informal caregivers’ lives to develop an in-depth understanding of the complexities of combining work and care, in which the welfare of the person being cared for is important to the carer.

STUDY TWO: CIARA'S STORY

Method

Participants and procedure

Six informal caregivers from throughout New Zealand participated in Study Two. Four were recruited following the release of results from Study One, which contained details about the second study. The results were disseminated via the various organisations that had supported the first study and a media release. The participants initiated contact via email or a Freephone number. Each participant contributed up to six interviews. In total, 27 interviews were completed, with times ranging from 28 minutes to 1 hour 20 minutes. Interviews were scheduled around the participant's caregiving commitments. Originally, an interview each week for 6 weeks was planned; however, caregiving commitments meant rescheduling for some participants, so involvement with the study varied from 7 weeks up to several months. The participants were aged between 63 and 84; three were female and three were male; three were caring for a spouse and three for a parent. The care recipients’ ages ranged from 64 to 92, with illnesses including heart disease, stroke, morbid obesity, Alzheimer's disease, and a rare terminal illness. The participants chose their own method of documenting their daily activities and feelings. Documentation methods included journal entries, emails, and photographs. This information provided a starting point for multiple semi-structured interviews between the first author and each participant. Once the researcher received each update, she contacted the participant and organised a telephone interview, which was recorded and transcribed prior to analysis. The University Human Ethics Committee approved these procedures.

Analysis

The data were analysed using narrative analysis. Narratives give an order and structure to events in ways that “give meaning to the experiences of the storyteller” (Stephens & Breheny, 2013, p. 14). Narrative analysis was chosen as a means to understand the complexity of caregiving informally for elders as a particular social relationship embedded within a social context. It is important to note that the excerpts presented here do not represent a once and for all story of informal caregiving, but rather a version of events co-produced with the interviewer. The first analytical step was to read through the transcripts, to identify the participant's “personal stories” (Murray, 2000). Of the six participants, Ciara was the only caregiver who was engaged in paid work and eldercare at the time of the interviews. One participant had already sold his business to provide fulltime care for his wife; another had taken early retirement in order to care; two were retired when caregiving began; and the final caregiver had independent means so he no longer needed to work. Ciara contributed data suitable for a detailed analysis of the intersection between the dual roles of caregiving and working. Her story provides a fitting example on which to focus a narrative analysis of this topic. Ciara is an Irish pseudonym chosen by the participant because it is pronounced as carer. She is a 63-year-old co-resident caregiver for her 87-year-old father Errol (also a pseudonym) who initially suffered a stroke and now has on-going heart problems. Currently single, Ciara has three children and other family with varying degrees of involvement with Errol's care. Ciara rented out her home when she moved in with Errol 7 years ago. She has been self-employed for 15 years and upon moving in with Errol she created an office space to work from home. This allows her greater flexibility to manage work and caregiving, which she feels she would be unable to do if she worked from an office in town.

RESULTS AND DISCUSSION

The following narratives illustrate Ciara's on-going struggle to reconcile self-employment and eldercare. The stories resonate with the findings from the first study, particularly with regard to finances and health. They highlight the difficulties around time management; being able to mentally switch from one role to the other; and the emotional investment in eldercare. Ciara's aims for both roles are similar. It is important for her to always give her best and to finish what she sets out to do. This contributes to a sense of self-satisfaction and bolsters her sense of self as a responsible and competent person. In Ciara's own words, she is a “completer–finisher.” However, her emotional attachment to her father and commitment to his care make it difficult for Ciara to combine both roles. She aspires to being a “good carer,” which Pickard (2010) describes as a moral narrative widely employed in late modern society that refers to a traditional notion of caregiving. The good carer is caring, compassionate and empathic; someone who puts the needs of a care recipient ahead of his or her own needs. On contrary, Ciara is simultaneously engaged in a contemporary, personal project as a capable businesswoman who derives satisfaction from running her own business. She has a responsibility to provide a professional service to her clients. Giving good service that meets her clients’ needs not only enhances her reputation but also ensures repeat business that will contribute to her future financial security. The following excerpts illustrate the tensions of combining care and work as described by Ciara as she attempts to reconcile these aspects of her life.

The caring caregiver

Ciara situates her story of becoming a caregiver by describing the very close relationship her father enjoyed with Ciara's mother and her concern regarding Errol's ability to cope on his own. About 2 months after Ciara's mother's death, Errol had a stroke, followed by a heart attack. She recalls the moment when she broached the subject of his care:

I remember asking him in Accident and Emergency when he was um, being checked over with his heart attack that um, you know, would he like to *inaudible speech*. We had, I talked a bit about it with my sisters and him beforehand and he just smiled this big smile at me and I thought “Right.”

Ciara presents her decision to care for Errol as unfolding naturally from the set of circumstances. She presents herself as the most obvious candidate for the job, being single, the eldest, and having unconsciously adopted the role of family coordinator and organiser. She also holds a firm conviction that older people should be enabled to age-in-place, “I do think if people can stay in their own homes it's best” and therefore residential care is the very last option for Errol's care.

Ciara portrays the transition into caregiving as doing what is best for her father. The fact that she loves Errol is taken for granted. Being cognisant that his life may soon end, and having committed to being his caregiver, Ciara is determined to see it through until the end. Although she has moved beyond feeling that she must do everything possible to keep Errol alive, Ciara strives to provide the best care that she can, framed in terms of meeting Errol's needs, “I feel hopeful that however long this lasts that I will look back on it with satisfaction knowing that Errol lived the last part of his life in a way that he wanted—with care, respect and love.” It is important to Ciara not to have regrets or feelings that she could have done more for Errol, which would undermine her narrative of being a good carer, and of her good care as a demonstration of being a capable person.

Throughout the 6 weeks of interviews, Ciara expressed concern over the quality of care she provides for Errol. In addition to providing the basic necessities of life, Ciara believes stimulation to be a vital part of good care. She says:

I like him to be able to go out and go to a movie with me or we go for a walk somewhere or we visit friends or do something that's stimulating, go to a museum … and if he doesn't get that I think “Oh, gosh, he's been in the house all week” … And if that happens for three weeks in a row, I sort of think “Oh, gosh, he's not getting enough stimulation” you know, those sort of things I think “Oh, the standard of care isn't very good.”

Ciara's commitment to providing a good standard of care for Errol means that she attends to his needs at the expense of her own. This contributes to a sense of confinement and restriction in her life, as this journal entry indicates:

I have a little life—this weekend I've taken Errol to an 80th birthday party and I'm glad I went but it took virtually the whole day from 11 am then home at 5.30 pm, make dinner, work in the office till bed time and now I'll have about 15 minutes to read before falling asleep … Life is small—in that the range of things I can do is very reduced. It makes me sad. Sometimes when I'm writing this journal I feel like a complainer about small things, sort of petty. And I don't like that small focus on such things. But it's inevitable as life here is a lot about the small things, cooking, cleaning, personal care, hats, scarves, gloves!

These comments suggest a tension between being happy to be at home in the role as caregiver, focusing on giving Errol the care he needs, and Ciara's desire to get on with her own life and pursue her own interests. Having just written about her “little life” she observes, “I went to 5 dance classes at the start of the year—only 1 hour a week—but I just haven't had the time to go back to it—and it was such fun and great exercise and my brain had to work differently—I loved it.” Ciara acknowledges that time out from caregiving is beneficial for her wellbeing; however, she reports mostly feeling too tired to engage in these types of activities. Apart from occasional conversations with close friends, which she treasures, Ciara has little respite from her caregiving to pursue activities for her own pleasure.

This notion of a “little life” also points to the different meanings of space and place. Ciara views home as a site for caregiving, with stimulating and leisure activities for both her and Errol understood as those activities that take place outside the home. Errol remaining inside the home is viewed as substandard care. This is further complicated by home also being a workspace for Ciara, which contributes to the “littleness” of her life. Ciara no longer encourages friends to come and visit because of the difficulties associated with sharing her home space with Errol, preferring instead to visit them in their own homes. Ciara also struggles with her recognition that this was originally Errol's home. Ciara reports feeling left out of decision-making, especially with regard to interior decoration. Working from home provides flexibility for informal carers; however, Ciara points to some of the difficulties of managing care and work from home. When home is a site of contested meanings as in this example, combining work and care creates tensions for those living in the same space. These tensions point to the situated nature of care; the site of care produces opportunities and constraints and this recognition contributes a more nuanced understanding of the experiences of combining employment and eldercare.

The successful businesswoman

Ciara's work as a self-employed businesswoman provides her main source of mental stimulation and social interaction. Ciara enjoys her work; she finds it interesting and challenging, and although it can be tiring she says, “It's good for me and you know, it's good for my brain and good for my, for the relationships I form with people over time … and I love learning new things.” She describes her work as “a blessing” because it provides a release and respite from caregiving; and she particularly likes the challenges it presents. When she has done a job well, Ciara feels a sense of satisfaction. The feedback she receives from clients confirms that she is able to function well as an intelligent person who has something to give to others in a professional capacity.

Despite the sense of fulfilment and satisfaction that she gets from work, Ciara experiences constant tension among her work obligations, her expectations for how she handles Errol's care, and what she can actually manage. This tension is particularly apparent as work provides a way for Ciara to move beyond the constrained boundaries of her “little life.” In direct contrast to her previous comment about a little life she says, “For me right now are the multiple commitments that are the biggest challenge—I'd like a simpler life.” These opposing comments are suggestive of ambivalence towards these dual roles. Ciara feels that her caregiving obligations mean that she is just “sort of, treading water, sort of staying on the same spot” to keep herself and the business afloat, and when caregiving diverts her attention away from work she has to:

sort of scramble like mad to catch up with my work and that's what's been giving me the heebie jeebies thinking “Oh goodness am I gonna, are people suddenly gonna say your work isn't good enough, Ciara and we can't you know, we you know, we can't employ you for things” ….

During a particularly stressful period with Errol, Ciara failed to keep an important appointment for work. Afterwards she said she felt like she was “skating on thin ice, what a fiasco with my new client—I'm feeling rather shaky. Not good!” She conceded that “when I'm feeling so swamped I think ‘Oh, I want to give it up it's all too much’.” Thus, although her work provides her with access to a wider world and intellectual stimulation which balances her caregiving responsibilities, at times Ciara feels that, “all I want is an income without working so I could look after Errol without the pressure of my job.”

This story is at odds with Ciara the “completer–finisher” and in this comment Ciara directs her ambivalence towards her work situation. On the one hand, her work provides a welcome alternative to her life as a caregiver. On the other hand, when she feels overwhelmed with work and caregiving, she considers giving up work so that she can concentrate on caring for Errol. Through her management of these tensions, Ciara suggests that caregiving is her first priority. Although she expresses frustration with him and with the situation caregiving places her in, she has never considered giving up her role as his caregiver. However, being single, and self-employed, Ciara worries about her future financial security. Being aware that caregiving is a finite role, her only option is to find a way to juggle work with caregiving in order to maintain a viable business in the interim and generate income to support her retirement. Therefore, she has to keep the business running, while she attends to being a good carer.

The juggler

Ciara's determination to carry on with both roles means that she moves back and forth between the roles, as she juggles their competing requirements. Thus, Ciara carves out a place for herself as “the juggler.” Sometimes this involves leaving Errol to fend for himself while she focuses on her work. She described one instance where she asked him to make his own tea, which Errol was happy to do, but he only managed a piece of dry bread and a tomato. Ciara felt guilty about this, admonishing herself for not providing “good” care for her father. However, “neglecting” Errol meant that she was able to fulfil her obligation to her client. On another occasion when her father suffered a serious bout of angina attacks while she was away for work, Ciara said she felt misunderstood and angry when her sister told her not to come rushing back for Errol's sake. Her sister's comment implied that returning would be Ciara's immediate response, but Ciara said that even if she wanted to she could not just abandon her clients. Not only did she have an obligation to them, she would have incurred a considerable financial penalty had she left. She said, “I can't just pike out and fly to Y. I have other obligations.” However, she concludes her story with the comment, “But there is such a feeling of being torn between so many responsibilities.”

This story is typical of the comments in Ciara's journal entries and interviews. Ciara desperately wants to do everything well. On the one hand, her love and compassion for Errol drives her commitment to give him the best care that she can; on the other, her sense of what is right and her desire to do her job well drives her commitment to her clients. Ciara values having the capability to care and to work, therefore she continues to try to find some kind of equilibrium. However, in this story she describes the difficulty of finding that balance:

I mean I've said there, you know, um, this idea of the desperate improvisation, and you know, sometimes it's not desperate. I don't want you to think it's um, I'm feeling desperate all the time, I'm not but it is, it's this incredible juggling act and I feel very torn between all the things that I've got to try and hold together.

Ciara often talks about her preoccupation with Errol's health and how she is always thinking ahead to pre-empt any potential problems. Given this, Ciara finds it surprising that she can put thoughts of Errol aside when she is working. For example, following a particularly stressful time when Ciara was trying to remotely manage Errol's care she commented, “but I did do the work well which amazes me, you know, that I can actually focus on people when ten minutes before hand you know, I'm almost in tears.” This indicates that it is possible to compartmentalise different aspects of life, and suggests that receiving appropriate support to combine the dual roles of work and caregiving could contribute to an overall sense of achievement and satisfaction rather than feelings of conflict and inadequacy.

The implications of juggling

In spite of exhortations from her family to take time for herself and to consider moving Errol into residential care, Ciara's solution for coping with the dual roles of caregiving and work are to “put myself last—my kids tell me this and I know it's true.” She neglects her own health and other relationships, to the point where she has already taken a year off work because of exhaustion and burnout. The catalyst for time out was a back injury that resulted in her having to crawl around the house. She was told by the doctor and the neurosurgeon that “I was too stressed and I was just holding myself so tensely, and um, that it popped.” Ciara now recognises that back strain and tinnitus are indicators that she is doing too much. She frequently refers to the connection between her physical health and her mental state, for example, “Tinnitus was loud last night and it bothered me—it happens worse when I'm stressed and tired. I can't muster up much useful thinking tonight and feel a bit swamped by my emotions.”

Putting herself last means Ciara gives up “things I love and sustain me.” Yet, she worries that she will be unable to look after Errol or work well if she does not look after herself. She knows that she needs to find a balance; however, she perceives that Errol's needs are greater than hers, “so that's the whole thing of putting him first at the expense of myself.” Like many carers, Ciara focuses only on the need to look after herself as a strategy to sustain her as a good carer and a good worker, rather than to sustain her own wellbeing for its own sake.

Due to her caregiving and work commitments, Ciara cannot spontaneously choose to do something that is purely for her own enjoyment. Instead, these activities require planning and effort, which places further pressure on Ciara. Often, anything other than caregiving and work are put to one side or inadvertently overlooked. For example, Ciara relates her anguish when she forgot to buy an Easter egg for her granddaughter. Celebrating Easter is important to Ciara's family, and giving her granddaughter an Easter egg signifies a meaningful exchange in their relationship. On Easter Sunday, when all the shops were closed she realised that she had been so busy prior to Easter, with work commitments and Errol's care that, “the Easter egg thing had gone west really. So, I just, I just did feel like crying about that. Yeah, you know, this has happened two years in a row and I just got angry with myself.”

In summary, Ciara's commitment to other relationships and to herself suffers from the strain of juggling multiple roles. When Ciara is unable to balance all the things in her life, she puts her own needs last. Ciara's overall narrative is about constrained choices that lead to trading one capability for another. In the first instance, Ciara gives up whatever is necessary in order to meet her commitment to being a caregiver for Errol. This devotion is based on her attachment to, and love for, her father. However, Ciara acknowledges that when her father is gone she will have to pick up the pieces of her own life and resume her former identities as Ciara the businesswoman, mother, grandmother, and perhaps partner, because only then will she have time to invest in a new relationship. She is fully aware that she must keep her business running out of financial necessity. However, she says, “I don't see how any carer can possibly do a full time job! Or even part time and sometimes I, you know, I wish that I had some private income that I could just have enough money to live on and um, do the caring job and not have to stress at work”.

This comment highlights the seemingly unresolvable tensions associated with dual roles of being a caregiver and earning an income. This reflects the findings of both studies. Based on their love and attachment to the person being cared for, caregiving is the first priority of these carers. Being able to successfully combine work with caregiving depends on how well caregivers can juggle both roles. In some cases, like that of Rose in the first study, juggling dual roles is not an option, and work is forsaken in order to provide care. Other caregivers, such as Ciara, continue to work, but because caregiving and work tend to be the least negotiable aspects of their lives, they trade leisure, social participation and relationships, and physical activities in order to prioritise caregiving and work commitments.

CONCLUSION

Together, these studies indicate a hierarchy of needs that caregivers must negotiate at the intersection of work and eldercare. The first priority is having the capability to care. It is a compassionate response to the plight of a frail elder; a particular kind of commitment borne of a shared social history and a personal relationship based on attachment (Kittay, 2013). Being able to work is the second priority. Depending on the particular circumstances, managing work with caregiving may involve a juggling act, or work may be forsaken altogether as previous studies have found (e.g. Barrett et al., 2014; Kim et al., 2013). Having the ability to maintain a healthy and balanced life is the caregivers’ lowest priority. When life becomes too difficult to balance, informal caregivers appear prepared to give up, or place on hold, other capabilities they value and that would contribute to their own health and wellbeing.

The findings from the studies presented here support previous research regarding the problematic reconciliation of work and eldercare (e.g. Calvano, 2013; Eldh & Carlsson, 2011; Fast et al., 2013; Pavalko & Henderson, 2006), pointing to a conflict between two dominant social policies regarding workforce participation and informal eldercare. Engaging in both work and eldercare constrains caregivers’ choices as they try to find a work–life balance. Many caregivers value the ability to work, because of financial necessity and because of the fulfilment it provides. In general, unpaid caregivers do not have the freedom to make decisions that promote their own health and enjoyment. Therefore, their physical, social, and emotional needs tend to be neglected, supporting Nussbaum's (2011) the argument that needing to trade one capability at the expense of another constrains human flourishing. Not having the freedom to choose other activities beyond eldercare and work has implications for informal caregivers’ on-going physical and emotional health. This is an unjust situation (Fine, 2012). It is essential to recognise the impact that eldercare provision may have on the lives of a growing number of people with employment responsibilities. Although informal care has benefits for older people, and is a valued emotional relationship for the caregiver, the difficulties that such responsibilities to care create in people's lives need to be addressed in future social policy as well as focusing on the benefits such care offers in terms of population ageing.

ACKNOWLEDGEMENTS

This study was funded by the New Zealand Foundation for Research Science and Technology now Ministry of Business, Innovation, and Employment.