Caregiving Spouses and the Experience of Involuntary Separation

Caregiving Spouses and the Experience of Involuntary Separation Abstract Background and Objectives We explored the meaning of the experience of involuntary separation, as defined formally by the Canadian government and informally by our participants, in formerly caregiving spouses whose partners had been admitted to long-term care. Our goal was to explore their lifeworld experience of separation, including factors influencing well-being as spouses shifted from at-home caregiving to involuntary separation. Research Design and Methods Guided, semi-scripted personal interviews were conducted with 10 individuals who had become involuntarily separated up to 4 years prior to the interview. A psychological-phenomenological analysis of participant narratives was conducted following procedures set out by Giorgi (2009). Results Themes included access and continued involvement with spouse post-admission; seeking connections with family, friends, and spiritual resources; adaptability in the face of change and loss; and the immediate and long-term emotional impact of involuntary separation. Regular involvement with spouses, resources and connections with others, and adaptability contributed to well-being, but the experience was nonetheless described as an “emotional bomb.” Discussion and Implications Participants experienced involuntary separation as an overwhelming burden marked by ongoing losses, from connections with spouses and social supports to shifts in identity and financial security. Greater understanding of the unique needs and experiences of involuntarily separated spouses may help individuals cope in practical ways with their shifting situation and highlights the value of meaning-focused support. Involuntary separation, Giorgi, Caregivers, Lived experience The lived experience of involuntary separation following spousal admission to long-term care is associated with a host of challenges and consequences; it is one of the most difficult transitions that a married person can face (Gaugler, Mittleman, Hepburn, & Newcomer, 2009; Nolan & Dellasega, 2000; Stadnyk, 2006). The separation often comes after a crisis, or series of crises, sometimes involving declining caregiver health linked to the caregiving load (McLennon, Habermann, & Davis 2010). Yet, caregiver burden and stress does not end after long-term care admission; these factors frequently increase and can be at heightened levels even several years later (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Majerovitz, 2007; Reuss, Dupuis, & Whitfield, 2005; Tornatore & Grant, 2002). Although the effects of caregiving and of separation have been well described, less understood is what the experience of involuntary separation means to caregiving spouses, and how the meaning given to this “loss of couplehood” connects to individual adjustment and outcomes (Førsund, Skovdahl, Kiik, & Ytrehus, 2014, p.123). The focus of this study lies with using a phenomenological approach to explore the meaning of the experience as caregiving spouses make the transition into involuntary separation. In Canada, involuntary separation is a legal term used when “a couple is no longer able to live together for reasons beyond their control, such as when one partner has to move into a nursing home or long-term care facility” (Government of Canada, 2010). The couple remains married, but to reduce the financial burden of long-term care, each member is considered single insofar as pension and income supplementation programs are concerned (Government of Canada, 2010). We endeavored to show respect to our participants by using the term “involuntary separation” as they did, referring loosely to the legal term and to their overall experience. Following involuntary separation, the role of the caregiving spouse changes but the burden tends not to ease. Although spousal admission to long-term care eases physical demands on the caregiver, other demands remain and the burden becomes primarily emotional in nature (Majerovitz, 2007; Reuss et al., 2005; Tornatore & Grant, 2002; Zarit & Edwards, 2008). Common caregiver responses to separation include feelings of guilt and failure (McLennon et al., 2010; Tornatore & Grant, 2002), helplessness or uselessness (Majerovitz, 2007; Reuss et al., 2005), grief and loss (Førsund et al., 2014; McLennon, et al., 2010; Reuss et al., 2005), resentment (Gaugler, Pot, & Zarit, 2007; Reuss et al., 2005), and loneliness and regret (Førsund et al, 2014; Nolan & Dellasega, 1999, 2000)—but also relief and feeling less overwhelmed (Gaugler et al., 2009; Nolan & Dellasega, 2000; Stone & Clements, 2009; Whitlatch, Schur, Noelker, Ejaz, & Looman, 2001). The shift to involuntary separation can be an emotionally complex time: most caregivers will experience many of these emotions concurrently (Reuss et al., 2005). Caregiver needs continue long after the spouse has been admitted to long-term care (Nolan & Dellasega, 1999). In comparison to other caregivers, spouses, and particularly wives, are at increased risk for heightened distress, depression, and a greater sense of burden, which are associated with greater risk of negative health outcomes (Roth, Fredman, & Haley, 2015). Nolan and Dellasega (1999) observed that caregivers struggle with feelings of emptiness and the finality of inevitable deterioration; these findings were echoed by Lieberman and Fisher (2001), who posited that anticipatory grief helps explain caregiver distress, and by Majerovitz (2007), who noted the emotional toll taken by a spouse’s physical or mental decline. Perceived lack of control may further contribute to the emotional burden of involuntary separation. In Canada, each province has established procedures to appoint short-term or long-term alternate decision-makers when an individual is deemed incapable of making the decision to enter long-term care; this decision-maker may not be the caregiving spouse if that person has been hospitalized or otherwise deemed temporarily incapable. Not being involved in the decision to place can leave caregivers feeling disempowered, unrecognized, and isolated (Nolan & Dellasega, 2000; Reuss et al., 2005). Particularly if the caregiver feels conflicted about the decision to place, caregiver stress increases still more when their spouse experiences difficulty adjusting to the long-term care environment (McLennon et al., 2010; Whitlatch et al., 2001). Yet, contrary to the stigma that family members “dump” their loved ones in long-term care, most spouses remain actively involved, continuing with some caring tasks such as helping at meals and doing laundry, and taking on new responsibilities, including maintaining vigilance and advocating for their spouse’s needs (Keefe & Fancey, 2000; Schulz et al., 2004; Stadnyk, 2006; Zarit & Edwards, 2008; Zarit & Whitlatch, 1993). Often spouses view visiting as one of the most important things they can do to show their support (Stadnyk, 2006). However, access can be difficult, particularly when the caregiver is unable to drive, or when there are few family members nearby to facilitate visitation (Gaugler, Anderson, & Leach, 2004; Majerovitz, 2007; Stone & Clements, 2009). The private, emotional context of caregiving can make it difficult for others to understand the caregiver’s experience, leading to feelings of isolation from people who would normally serve as sources of social support (Sidell, 2000). Adding to the burden, some spouses experienced long-term care placement as akin to abandoning their marriage vows (Sidell, 2000; Stone & Clements, 2009). The past 15 years have seen repeated calls for more research exploring the needs of caregivers during and after the admission process, but much remains to be understood about the lived experience of caregiving spouses during the long process of transition and adjustment (Gaugler, Roth, Haley, & Mittelman, 2008; Lieberman & Fisher, 2001; Nolan & Dellasega, 2000; Whitlatch et al., 2001). One contribution to this area of research has been Mullin, Simpson, and Froggatt’s (2011) exploration into the experiences of involuntarily separated spouses of persons with dementia. They outlined four themes central to their participants’ experiences: identity in the spousal relationship, the difficulties in making sense of change, perceptions of the care provided to their spouses, and feelings about the future. They echoed the call for continued research exploring the early period of transition into spousal involuntary separation. Our aim was to further describe the meaning of the experience of involuntary separation from the perspective of persons in rural Alberta, Canada, who were living the experience. Method Having a spouse admitted to long-term care is an important turning point in an individual’s life story, but it is given structure and meaning in the context of the whole life (Kenyon & Randall, 1999). Guided, semi-scripted, and open-ended personal interviews were conducted with 10 English-speaking individuals who had experienced involuntary separation within the past 1 to 48 months. Exclusion criteria included being divorced from the spouse or in another committed relationship. Participants were invited to share anything that they wanted about their experiences; this approach enabled us to begin to describe the patterns and structure of involuntary separation (Parse, 2001; Streubert & Carpenter, 1999). The interview explored details surrounding their spouse’s move into long-term care and the months or years following, experiences that had a particular impact on how they experienced the separation, and queried for changes in how they thought of themselves as individuals and as a husband or wife. Participants displayed a range of emotion, from the higher volume of anger and frustration accompanied by animated gesticulation, to a softer tone and downcast demeanor, often accompanied by tears. Despite the heavy subject matter, all participants indicated that they were glad to share and to have someone hear them. Participants were recruited from four long-term care facilities located in the same small city in southern Alberta, Canada. Two of the four facilities had a shared (Protestant) religious affiliation; the other two facilities had no religious affiliation. Participants were recruited with assistance from nurses and chaplains who identified potential participants and made the initial contacts. Participants were given a choice of meeting locations. All but one requested the first author come to their homes. The other interview took place in the care facility chaplain’s office. The interviews were recorded and then transcribed verbatim. Participants ranged in age from 70 to 95 years; two participants declined to share their age. Participants reported being married to their spouse between 20 and 66 years; two were widowed at the time of the interviews. All participants were Canadian with central or western European backgrounds, with many coming from family farming traditions. All now lived alone in a house, condo, or apartment within city limits. Two participants resided in apartments within the same multilevel care facility that their spouse had been admitted to. Analyses were conducted following the procedures of psychological-phenomenological analysis described by Giorgi (2009). This approach explores a topic as it is lived by participants, via the person’s telling of their own stories. Rather than trying to fit the data into a predetermined structure, the structure of the experience emerged from the participants’ own descriptions of their experiences. Rigor was attained by making objectivity a primary focus throughout the research process; the researchers kept their focus on the raw data, returning to read and re-read descriptions in the participants’ own words and endeavoring to bracket their own past knowledge and preconceived ideas about the phenomenon (Giorgi, 2009; Omery, 1983). Once the researchers agreed that they had a sense of the scope of the phenomenon under investigation, each transcript was divided into its natural meaning units, which were then re-described in the language of the researchers’ discipline—psychology—as each researcher clarified and reduced the interview content into concise, objective statements about the experience (Giorgi, 2009). Themes emerged from the data as the researchers asked questions and reflected on what the meaning units said about the participants’ experiences. Reliability was established by having the two authors and one additional trained researcher perform the analyses independently of each other. They then met to compare and discuss the themes that arose from the data and blended the themes into one consistent statement capturing the essence of the phenomenon of involuntary separation. Results Analysis of the participant narratives resulted in 17 categories that were grouped into four descriptive themes: the emotional upheaval that characterized the experience, connections to social and emotional support, level of access and involvement with the spouse, and carrying on after the shift from the spouse-caregiver role to being involuntarily separated. Taken together, these themes show the benefits of social connections and a continued relationship with the spouse, illustrate an emotionally overwhelming experience, and describe the need to carry on after the involuntary separation. Emotional Upheaval Above all, the shift to involuntary separation and the initial aftermath was “like a bomb dropped,” a near- overwhelming experience of upheaval and mourning. At the beginning of the transition, there were decisions to make and much paperwork to complete, as well as financial concerns, which nearly all participants discussed. Participants were concerned about whether they were making the right choices and filling out the paperwork correctly. They described the “nightmare” of finding an appropriate long-term care facility. Some expressed concern about the quality of the facility that their spouse had been transferred into. One participant, Gladys (participant names have been changed), noted emphatically that she was brokenhearted. I said, you know, he worked all his life. I’m here in a nice apartment with everything and…[tearful] he has to be in this hellhole.” Gladys and her husband were small business owners. They had been married for 60 years and were involuntarily separated for 48 months before he died. Emotional upheaval was exacerbated when the participants learned that the wise financial decision would be the legal process of involuntary separation. To some, the separation felt like an “invalidation” of their wedding vows, an abandonment at the time when their spouses needed them the most. Gladys described how, although their children, the care providers, and administrators saw the involuntary separation as a logical decision, for her it was “absolutely devastating… I couldn’t believe what I was hearing… on top of everything else, now you’re telling me that I have to be legally separated from my husband?” A few years later, the memory was still upsetting. Mae, age 70, and her dairy farmer husband had been married for 47 years, and separated for 30 months, with Mae now living independently in a condo. A series of falls and medical events led to declining health that made it increasingly difficult for Mae to care for her husband at home. When one broken bone could not be repaired surgically, it became clear that the options were for her husband to stay at home and be in bed most of the time, or to enter long-term care. For Mae, involuntary separation meant setting aside her expectations of aging together as a couple who would “share the joys and the sorrows” and an intensification of her role as caregiver. Her son understood the separation differently: Our oldest son was very much against it because he says, “Well, that’s divorce”, and of course the caregiver said, “No, no, no, it’s not divorce, it’s involuntary separation,” exactly what we said it was, you know, and - the only way that we could get assistance for it from the government, and - and it wasn’t easy, but cried lots. Perhaps one factor contributing to her son’s initial resistance was the speed at which the shift happened. Mae’s husband was admitted to long-term care “right from home, from looking after his own garden and his own yard and, I mean – we enjoyed our house. We moved together there and then…he went with the ambulance and, and, never came home after that.” In the months following the admission, Mae’s children spent a great deal of time with both their parents. However, once their father’s health stabilized, their visits became less frequent. Mae’s impression was that they did not realize “that the support is still needed, you know.” The initial period of separation was experienced by participants as especially exhausting, frustrating, and filled with conflicting emotions. Participants shared how they were simultaneously relieved and remorseful about no longer being the primary caregiver. Feelings of helplessness and experiences of sadness and depression were commonly reported. Participants cried a great deal during this time, and many cried again when they told their stories about this timeframe. Hilda, age 77, and her husband were married 56 years before he died 5 months after his admission into long-term care. Hilda continued to live in the house with large garden plots that she had shared with him. Hilda’s career in providing respite care had given her some preparation for what was ahead. Nevertheless, she felt like she was letting him down when her husband’s home-care nurses decided that he should be moved into long-term care. Hilda’s husband had encouraged her not to hesitate to place him in long-term care when the time came, but she knew he would not like it there and resisted making the call. Another participant, Richard, stated flatly that “one of the hardest things is, is to adjust to living alone and it’s not easy. I’ll tell you it’s not easy.” Richard, age 80, and his wife had been married for 56 years. She had been moved into long-term care 12 months prior. Participants who were involved in the decision to admit their spouse into care reported more feelings of guilt and failure, whereas distress and feelings of helplessness were amplified among participants who had been excluded from the decision. When asked about his thoughts during the time that his wife was being moved from their shared independent living apartment to a secure unit (for persons with severe cognitive decline), George replied, “Oh, I didn’t even know about it, so I – not much.” George thought the facility staff must have contacted his children to get the go-ahead for the move, but he was not sure. When physicians, family members, or others made the decision to admit, the caregiving spouse was left feeling powerless and hurt. Participants explained that they understood the separation was inevitable, but most wanted more time to prepare. Jean, age 75, and her husband were both immigrants from the Netherlands. They were married for 38 years, and separated for 2 months, with Jean living independently in a condo. Jean was hospitalized for a brief period and, after being discharged, was told that her friends had arranged for her husband to be admitted to long-term care while she was in hospital. She reported weeping constantly. It was very, very hard because, you know, I was in the hospital and all of sudden he was taken away … and [friends] said, well, we are doing it for you because … your health is, is suffering on account of it… in a way, yeah, it was taken out of my hands. And that was very, very hard too, because I was not prepared for it. Connections and Social Losses Connecting With Others Connections with friends and family were reported as factors that helped make the experience more bearable. Children and close friends in particular provided practical assistance, such as packing the spouse’s belongings to take to the care facility, and they also shared the emotional burden. Sarah, 95 years old, had been married to her husband for 20 years and involuntarily separated for 24 months; she had previously been widowed. Sarah had an assisted-living apartment but still walked 1 mile every day and did her own hoovering. She got by mainly on Old Age Security. Sarah, clearly delighted and appreciative, cited exactly how many times each of her children had visited from out of town in the time since her husband had been admitted. She said, “My kids, they help me…thank God for my children…my kids help me. And my daughter comes and she drives me wherever I want and she buys my grocery.” Help from others was particularly salient for participants whose caregiving load had contributed to their own ill health and hospitalizations. When their spouse’s admission to long-term care involved too many tasks for them to accomplish alone, help from others lessened the burden. Rita, age 88, came from a rural background. She and her husband had been married for 65 years; she had lived independently since their involuntary separation 18 months earlier. Rita described her marriage to her “tall, handsome, curly-haired” husband as wonderful, and the separation as challenging. She expressed gratitude toward her sons, who assisted in arranging the placement after the strain of caregiving resulted in her own hospitalization. Rita’s son still calls up to three times daily to make sure she is okay. Social Losses When support from others was available, it provided great relief to participants. However, our highlighting social connections is not intended to imply that social support was the typical experience. Equally common were reports of social and activity losses. Participants shared about loneliness and boredom. The separation robbed participants of the remaining shared activities that illness had not yet taken away. Jacob, age 84, a former entrepreneur, and newly experiencing involuntary separation, described his experience of social losses as terrible, because I sit here by myself. Usually I’m fairly sociable, not always, but usually I’m fairly sociable … and I don’t even want to talk to anybody. I get in the car, I go for a drive, she is not there. She has been there for 62 years. An educator and school administrator before his retirement, Richard emphasized that he had too much energy for a small condo so he continued to live in their house with its lush garden and his picture-framing supplies in the basement. An active presence in his community, Richard described coming home to a house that is “dead quiet.” He would check the answering machine first thing in the hope of a social interaction to bring life to his quiet house, and “then you get to where the loneliness sets in… and you just don’t know what to do with yourself. Um, you’re not sure if you want to eat, you’re not sure if you want to sleep.” Richard does volunteer work because “it’s a chance to talk to somebody.” Participants also struggled with fitting in socially. No longer identifying as part of a married couple, yet not widowed or divorced, they found it a challenge to socialize with others and felt like they no longer fit in at social events. Before Rita’s husband was admitted to care, his decreasing mobility left the two of them homebound; post-admission, Rita had time for social activities but could not find a place where she felt comfortable engaging. Rita said that, “when this happens, you don’t fit in with married people, you don’t fit in with widows. So you’re, you’re on your own. So who do you go to? So I pretty well stay in my suite.” Moreover, the uniqueness of the situation made it difficult for family and friends to understand what the caregiving spouse was experiencing, leading to heavy feelings of isolation from those who, in other situations, had been sources of social support. Exchanges became awkward, and centered on repeated questions about the well-being of the absent spouse. Sometimes children and friends did not want to hear about the more challenging days. For Richard, phone calls from a social worker were a rare social lifeline and an opportunity to share about his own responses to the involuntary separation. I have a lot of friends who suddenly have become quite distant since my wife is in the home and I am alone… Well, you get to the point where you say, well, you know, nobody calls, nobody comes, and you start to believe nobody cares… It’s the loneliness that’s the part that really, really gets to you and the fact that people who used to…be your friends, people who used to invite you over and come over are basically gone. You see them in church on Sunday and that’s about it. Access and Involvement Continued regular interaction with the spouse in long-term care made the shift from caregiving spouse to involuntarily separation more bearable. However, barriers to accessing the facility, barriers to meaningful involvement in caregiving activities, and concerns about the well-being of the spouse in their absence contributed to a considerably more difficult experience of separation. Women with fewer financial resources especially felt the impact of these barriers and reported feeling more powerless because of it. Those participants who were unable to visit regularly talked about not feeling comfortable asking others for transportation, not having the financial means to use a taxi service, and being unable to access the long-term care facility on their own during inclement weather. For these individuals, the distance from home to care facility was much greater than physical distance alone. Sarah’s summary was, “so he’s there and I’m here, and I see him once in a while and that’s it.” Sarah and her husband would have preferred for her to move into an apartment on the grounds of his long-term care facility, but she could not afford the higher fees. Conversely, those participants who had regular access and who felt comfortable at the care facility highlighted the value of continuing to be meaningfully involved in their spouses’ lives. George and his wife moved from their farm into town when they were retirement age, and then into a multilevel care facility condo when his wife’s health declined and George decided that he did not want to have to cook any more. For George, the shift to long-term care was a natural part of living in a multilevel care facility. Although his wife of 53 years went upstairs in the evenings to the secure unit, they spent their days together in the condo, regularly going shopping and out for lunch. Good access enabled participants to carry on in their spouse-caregiver roles in a meaningful way. Lily shared how continued involvement with her spouse was key to her adjustment to the involuntary separation. Lily, age 78 and married for 59 years, noted that in the 18 months since becoming separated, she had established a pattern of regularly visiting at meal times to help her husband with his meals. Lily also resided within the same multilevel care complex as her husband, which facilitated access. Lily’s visits affirmed to her that she did not “get rid of him” into long-term care; she still had a job to do each day, and she felt confident that she continued to positively influence her husband’s well-being. Lily also expressed confidence that her spouse was receiving a high standard of care from the team at the facility, where she and her husband were both treated with great kindness. This confidence was crucial for caregivers’ peace of mind. When confidence in care was not present, participants repeated their concerns, over and over. It weighed heavily on them. Many reported having trouble sleeping, especially on days when they were unable to spend much time with their spouse. Jacob said, Even [when she was] here… I’d get up, go look, oh, watch her for a while, see how she is breathing, and I can’t do that now. She’s not there. And then, are they looking after her? I don’t know. Some participants took action in response to their concerns about quality of care. Richard was eventually able to have his wife moved into a quieter, more peaceful unit. Gladys largely defined her involvement post-admission as one of advocacy, especially after her husband was injured twice in a 2-week period. Visiting and advocating for her husband’s care occupied a significant portion of her time each day. I think anyone putting their loved one in care needs to be there. And you need to not just be there; you have to … let it be known that this is your loved one, this is your husband or your father, your mother and you are going to be there. And uh, don’t ignore me ‘cause I’m not going to go away…It’s a fine line between, um, being the advocate and being there… and accepting that [long-term care staff] have, ultimately, the decisions. Carrying On In the face of an involuntary separation characterized by emotional upheaval, daily life changes, changing responsibilities, and social losses, participants felt a keen sense of needing to carry on, to keep going each day. Carrying on was described by participants as distinctly different from moving on. Richard explained that, although his wife was no longer his constant companion, she was still alive and his obligations to her remained. He had to work within the space of being involuntarily separated rather than moving on to widowhood. For some, carrying on looked like resilience. Rita described how she carried on by focusing on the particulars of each day rather than ruminating on her situation, which she suspected would immobilize her. Yet, in true prairie fashion, Rita asserted that “you pick up the pieces and you keep going again.” Gladys explained that she had been able to carry on because she prepared herself for the long-term care admission by learning as much as she could before it happened. The value of preparatory information cannot be overstated: those who felt ill-prepared stated that they wished someone had told them what it would be like. Richard experienced depression in response to the involuntary separation, explaining that: “There are days when you just get … you get, like I said, short bouts of depression set in. You’ve got to just fight it.” For others, carrying on looked more like resignation. Mae illustrated her resignation by explaining that she has no comfort or hope that things will get better. Among these participants, resignation went hand-in-hand with avoidant coping behaviors. Participants avoided favorite shared activities such as going for a drive, and cherished spaces such as the dining room table. Meal preparation, once an enjoyable activity, became a chore, the joy having leached out of it. Rita said, “I love cooking and he loved to eat. Well, now, anything’s good enough. You know, you don’t fuss for one person. I…make do. I can make soup in the kettle and eat right out of the kettle.” The strength needed to carry on was found in family, friends, a commitment not to abandon the spouse, and in religious beliefs. Those participants whose spouses were admitted to religious-affiliated facilities noted the supportive role of facility chaplains and on-site church services. Religious participants described connecting to their beliefs, noting promises of help in times of need and comfort in turning to prayer. Some had a sense that their faith was shaken by their experiences, whereas others saw their beliefs as an anchor when their sense of fairness was torn apart. Rita shared that prayer was a lifeline for her, although, for a time, she could not help but have angry prayers: “And the thought came, God, you tell us that we call upon you, you meet all our needs. Why can’t you answer my prayer that my husband doesn’t have to leave me? You know?” Jean spoke of her concerns about who would take care of her husband if something happened to her, noting: “we have no children or anything and then you think, you know, nobody to help you in that way… I shouldn’t worry about it because the Lord will provide that way too.” Discussion Participants principally described the experience of involuntary separation following a caregiving period as overwhelming and involving significant emotional and task-related burdens. Schulz and colleagues (2004) noted that the gradual emotional recovery common to the experience of being widowed is not typically seen in care facility placement; our participants’ stories of an unwilling identity shift and of numerous ongoing losses showed scant evidence of emotional recovery. Attempting to regain a sense of equilibrium following involuntary separation was a challenging, largely futile process marked by loss of identity as a “married person,” and exacerbated in some cases by seemingly trading away, or “invalidating,” that identity in exchange for financial assistance. Separated not only by physical distance, participants encountered a changed legal designation for their relationship that, to some, felt like a formal dissolution of their marriage. The shift to involuntary separation was made more bearable when social connections were available, and when circumstances facilitated a continued relationship with the spouse. Yet, these supports were rarely available: social losses were marked by feelings of not fitting in; time with couple friends felt awkward because the participant was socially not part of a couple anymore, but neither were they able to feel connected with widows and widowers in various stages of bereavement. Stadnyk (2006) described it as a kind of “married widowhood” (p. 284) where they live in “limbo” (p. 290). Uncomfortable exchanges were identified by participants as significant day-to-day struggles. Past research suggests that such feelings can discourage caregivers from engaging in social activities (Stadnyk, 2006). Although involuntarily separated spouses would surely find welcome at social groups—either for married persons or for widowers—they experienced their different status as an emotional barrier to engaging with those groups that, consequently, kept them separated from vital social support. Another factor impacting adjustment was perception of the quality of care provided at the long-term care facility. Participants who had confidence in care did one of two things: they repeatedly voiced their relief or they hardly mentioned quality of care at all. When confidence of care was not present, participants’ concerns were brought up repeatedly during the interviews. Gladys could hardly bear to think of the disparity between the comforts that their hard work had afforded them and the “hellhole” that her husband had been sent to; frustration and guilt over the unfairness of reducing him to such circumstances motivated Gladys to advocate passionately for her husband’s care. Others also had concerns that kept them awake at night. Mullin, Simpson, and Froggatt (2011) discussed a “visiting as surveillance” form of relationship with care providers, in which spouse-caregivers conducted wellness checks and took on certain tasks themselves to ensure that their spouses received needed care; this increased vigilance and involvement may help those spouses manage their distress over concerns about quality of care. The range of our participants’ experiences echoes and adds weight to past research findings, yet their stories also highlight that each person’s unique set of circumstances can play a role in shaping the course of the post-involuntary separation period. One example is the role of setting, and particularly the advantages conferred by multilevel care facilities in facilitating continued relationship and regular connection to care providers in contrast to—at the extremes—rare access, limited relationships, and worries about quality of care. Continuing in the caregiving role may help to maintain mutuality in the relationship, which has been connected to lower levels of caregiver stress (Godwin, Swank, Vaeth, & Ostwald, 2013). Although some participants living off-site also experienced a good level of access, it was contingent on income, health, and other factors impacting ability to travel. A second example of the impact of individual circumstances on shaping the post-separation experience is the intensified distress reported by those participants who were removed from the decision to admit their spouse to long-term care. These caregivers were, without warning, excluded from a crucial caregiving decision. Participants surely experienced these actions of their family and friends as disempowering and disloyal when the decision was made without their knowledge. Most participants retained the legal right to reverse the long-term care admission decision; however, each eventually recognized the necessity of placement while still mourning the abruptness of the separation. Our findings among caregiving spouses support those of Nolan and Dellasega (1999) and Reuss and colleagues (2005), who found that loss of control or feeling disempowered can lead family caregivers to feel isolated. Nolan and Dellasega (1999) recommended that health care providers assist separated caregivers by helping them identify realistic and attainable roles in their new situation. Finding a sense of underlying meaning and purpose in each day seemed to be crucial in connecting participants to feelings of hopeful resilience. Research increasingly suggests that finding meaning may help caregiving spouses; involuntarily separated spouses would likely experience similar benefits (McLennon, Habermann, & Rice, 2011; Quinn, Clare, & Woods, 2010). This study did not identify any differences in distress between male and female respondents, though further study with more balanced gender representation is merited. Our findings have both replicated and extended the existing literature on separation due to spousal admission to long-term care. Our use of a psychological-phenomenological approach to explore involuntary separation provides further evidence of convergence across different methods and different populations for involuntary separation as a uniquely challenging experience. This study sought similarities among those experiencing involuntary separation, but individuals who are in the midst of the shift may instead focus on the differences between themselves and others in their social circles who have not experienced this form of separation. This focus may amplify the apparent uniqueness of their situation and, consequently, magnify feelings of loneliness and isolation. Future research might continue to explore this tension between comparison groups. Research across broader Canadian regions and contexts may also be valuable, especially for exploring the interplay of the financial and emotional impacts of involuntary separation. Preparatory materials teaching about available resources and the emotional impact of involuntary separation may help spouse-caregivers navigate this very challenging shift. Funding None reported. Conflict of Interest None reported. Acknowledgements The authors wish to express their sincere thanks to Rev. Robert Findley, Daniel Mantei, Gwen Funk, Rev. George Brandt, and the long-term care facilities for their tremendous support. We owe a special debt of gratitude to our participants, who each shared a piece of their story with us. References Aneshensel, C. S. , Pearlin, L. I. , Mullan, J. T. , Zarit, S. H. , & Whitlatch, C. J . ( 1995). Profiles in caregiving: The unexpected career . San Diego: Academic Press. Førsund, L. 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Long-term care placement of dementia patients and caregiver health and well-being. JAMA , 292, 961– 967. doi: 10.1001/jama.292.8.961 Google Scholar CrossRef Search ADS PubMed  Sidell, N . ( 2000). Factors that explain marital happiness when a spouse lives in a nursing home: Married but living apart. Journal of Family Social Work , 4, 3– 20. doi: 10.1300/j039v04n02_02 Google Scholar CrossRef Search ADS   Stadnyk, R . ( 2006). Community-dwelling spouses of nursing home residents: Activities that sustain identities in times of transition. Topics in Geriatric Rehabilitation , 22, 283– 293. doi: 10.1097/00013614-200610000-00004 Google Scholar CrossRef Search ADS   Stone, L. J., & Clements, J. A . ( 2009). The effects of nursing home placement on the perceived levels of caregiver burden. Journal of Gerontological Social Work , 52, 193– 214. doi: 10.1080/01634370802609163 Google Scholar CrossRef Search ADS PubMed  Streubert, H. J. , & Carpenter, D. R . ( 1999). Qualitative research in nursing: Advancing the humanistic imperative . Philadelphia: Lippincott Williams & Wilkins. Tornatore, J. B., & Grant, L. A . ( 2002). Burden among family caregivers of persons with Alzheimer’s disease in nursing homes. The Gerontologist , 42, 497– 506. doi: 10.1093/geront/42.4.497 Google Scholar CrossRef Search ADS PubMed  Whitlatch, C. J., Schur, D., Noelker, L. S., Ejaz, F. K., & Looman, W. J . ( 2001). The stress process of family caregiving in institutional settings. The Gerontologist , 41, 462– 473. doi: 10.1093/geront/41.4.462 Google Scholar CrossRef Search ADS PubMed  Zarit, S. H. , & Edwards, A. B . ( 2008). Family caregiving: Research and clinical intervention. In B. Woods (Ed.), Handbook of clinical psychology and ageing  ( 2nd ed., pp. 255– 288). Sussex, UK: Wiley. Google Scholar CrossRef Search ADS   Zarit, S. , & Whitlatch, C . ( 1993). The effects of placement in nursing homes on family caregivers: Short and long term consequences. The Irish Journal of Psychology , 14, 25– 37. doi: 10.1080/03033910.1993.10557912 Google Scholar CrossRef Search ADS   © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Gerontologist Oxford University Press

Caregiving Spouses and the Experience of Involuntary Separation

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© The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
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Abstract

Abstract Background and Objectives We explored the meaning of the experience of involuntary separation, as defined formally by the Canadian government and informally by our participants, in formerly caregiving spouses whose partners had been admitted to long-term care. Our goal was to explore their lifeworld experience of separation, including factors influencing well-being as spouses shifted from at-home caregiving to involuntary separation. Research Design and Methods Guided, semi-scripted personal interviews were conducted with 10 individuals who had become involuntarily separated up to 4 years prior to the interview. A psychological-phenomenological analysis of participant narratives was conducted following procedures set out by Giorgi (2009). Results Themes included access and continued involvement with spouse post-admission; seeking connections with family, friends, and spiritual resources; adaptability in the face of change and loss; and the immediate and long-term emotional impact of involuntary separation. Regular involvement with spouses, resources and connections with others, and adaptability contributed to well-being, but the experience was nonetheless described as an “emotional bomb.” Discussion and Implications Participants experienced involuntary separation as an overwhelming burden marked by ongoing losses, from connections with spouses and social supports to shifts in identity and financial security. Greater understanding of the unique needs and experiences of involuntarily separated spouses may help individuals cope in practical ways with their shifting situation and highlights the value of meaning-focused support. Involuntary separation, Giorgi, Caregivers, Lived experience The lived experience of involuntary separation following spousal admission to long-term care is associated with a host of challenges and consequences; it is one of the most difficult transitions that a married person can face (Gaugler, Mittleman, Hepburn, & Newcomer, 2009; Nolan & Dellasega, 2000; Stadnyk, 2006). The separation often comes after a crisis, or series of crises, sometimes involving declining caregiver health linked to the caregiving load (McLennon, Habermann, & Davis 2010). Yet, caregiver burden and stress does not end after long-term care admission; these factors frequently increase and can be at heightened levels even several years later (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Majerovitz, 2007; Reuss, Dupuis, & Whitfield, 2005; Tornatore & Grant, 2002). Although the effects of caregiving and of separation have been well described, less understood is what the experience of involuntary separation means to caregiving spouses, and how the meaning given to this “loss of couplehood” connects to individual adjustment and outcomes (Førsund, Skovdahl, Kiik, & Ytrehus, 2014, p.123). The focus of this study lies with using a phenomenological approach to explore the meaning of the experience as caregiving spouses make the transition into involuntary separation. In Canada, involuntary separation is a legal term used when “a couple is no longer able to live together for reasons beyond their control, such as when one partner has to move into a nursing home or long-term care facility” (Government of Canada, 2010). The couple remains married, but to reduce the financial burden of long-term care, each member is considered single insofar as pension and income supplementation programs are concerned (Government of Canada, 2010). We endeavored to show respect to our participants by using the term “involuntary separation” as they did, referring loosely to the legal term and to their overall experience. Following involuntary separation, the role of the caregiving spouse changes but the burden tends not to ease. Although spousal admission to long-term care eases physical demands on the caregiver, other demands remain and the burden becomes primarily emotional in nature (Majerovitz, 2007; Reuss et al., 2005; Tornatore & Grant, 2002; Zarit & Edwards, 2008). Common caregiver responses to separation include feelings of guilt and failure (McLennon et al., 2010; Tornatore & Grant, 2002), helplessness or uselessness (Majerovitz, 2007; Reuss et al., 2005), grief and loss (Førsund et al., 2014; McLennon, et al., 2010; Reuss et al., 2005), resentment (Gaugler, Pot, & Zarit, 2007; Reuss et al., 2005), and loneliness and regret (Førsund et al, 2014; Nolan & Dellasega, 1999, 2000)—but also relief and feeling less overwhelmed (Gaugler et al., 2009; Nolan & Dellasega, 2000; Stone & Clements, 2009; Whitlatch, Schur, Noelker, Ejaz, & Looman, 2001). The shift to involuntary separation can be an emotionally complex time: most caregivers will experience many of these emotions concurrently (Reuss et al., 2005). Caregiver needs continue long after the spouse has been admitted to long-term care (Nolan & Dellasega, 1999). In comparison to other caregivers, spouses, and particularly wives, are at increased risk for heightened distress, depression, and a greater sense of burden, which are associated with greater risk of negative health outcomes (Roth, Fredman, & Haley, 2015). Nolan and Dellasega (1999) observed that caregivers struggle with feelings of emptiness and the finality of inevitable deterioration; these findings were echoed by Lieberman and Fisher (2001), who posited that anticipatory grief helps explain caregiver distress, and by Majerovitz (2007), who noted the emotional toll taken by a spouse’s physical or mental decline. Perceived lack of control may further contribute to the emotional burden of involuntary separation. In Canada, each province has established procedures to appoint short-term or long-term alternate decision-makers when an individual is deemed incapable of making the decision to enter long-term care; this decision-maker may not be the caregiving spouse if that person has been hospitalized or otherwise deemed temporarily incapable. Not being involved in the decision to place can leave caregivers feeling disempowered, unrecognized, and isolated (Nolan & Dellasega, 2000; Reuss et al., 2005). Particularly if the caregiver feels conflicted about the decision to place, caregiver stress increases still more when their spouse experiences difficulty adjusting to the long-term care environment (McLennon et al., 2010; Whitlatch et al., 2001). Yet, contrary to the stigma that family members “dump” their loved ones in long-term care, most spouses remain actively involved, continuing with some caring tasks such as helping at meals and doing laundry, and taking on new responsibilities, including maintaining vigilance and advocating for their spouse’s needs (Keefe & Fancey, 2000; Schulz et al., 2004; Stadnyk, 2006; Zarit & Edwards, 2008; Zarit & Whitlatch, 1993). Often spouses view visiting as one of the most important things they can do to show their support (Stadnyk, 2006). However, access can be difficult, particularly when the caregiver is unable to drive, or when there are few family members nearby to facilitate visitation (Gaugler, Anderson, & Leach, 2004; Majerovitz, 2007; Stone & Clements, 2009). The private, emotional context of caregiving can make it difficult for others to understand the caregiver’s experience, leading to feelings of isolation from people who would normally serve as sources of social support (Sidell, 2000). Adding to the burden, some spouses experienced long-term care placement as akin to abandoning their marriage vows (Sidell, 2000; Stone & Clements, 2009). The past 15 years have seen repeated calls for more research exploring the needs of caregivers during and after the admission process, but much remains to be understood about the lived experience of caregiving spouses during the long process of transition and adjustment (Gaugler, Roth, Haley, & Mittelman, 2008; Lieberman & Fisher, 2001; Nolan & Dellasega, 2000; Whitlatch et al., 2001). One contribution to this area of research has been Mullin, Simpson, and Froggatt’s (2011) exploration into the experiences of involuntarily separated spouses of persons with dementia. They outlined four themes central to their participants’ experiences: identity in the spousal relationship, the difficulties in making sense of change, perceptions of the care provided to their spouses, and feelings about the future. They echoed the call for continued research exploring the early period of transition into spousal involuntary separation. Our aim was to further describe the meaning of the experience of involuntary separation from the perspective of persons in rural Alberta, Canada, who were living the experience. Method Having a spouse admitted to long-term care is an important turning point in an individual’s life story, but it is given structure and meaning in the context of the whole life (Kenyon & Randall, 1999). Guided, semi-scripted, and open-ended personal interviews were conducted with 10 English-speaking individuals who had experienced involuntary separation within the past 1 to 48 months. Exclusion criteria included being divorced from the spouse or in another committed relationship. Participants were invited to share anything that they wanted about their experiences; this approach enabled us to begin to describe the patterns and structure of involuntary separation (Parse, 2001; Streubert & Carpenter, 1999). The interview explored details surrounding their spouse’s move into long-term care and the months or years following, experiences that had a particular impact on how they experienced the separation, and queried for changes in how they thought of themselves as individuals and as a husband or wife. Participants displayed a range of emotion, from the higher volume of anger and frustration accompanied by animated gesticulation, to a softer tone and downcast demeanor, often accompanied by tears. Despite the heavy subject matter, all participants indicated that they were glad to share and to have someone hear them. Participants were recruited from four long-term care facilities located in the same small city in southern Alberta, Canada. Two of the four facilities had a shared (Protestant) religious affiliation; the other two facilities had no religious affiliation. Participants were recruited with assistance from nurses and chaplains who identified potential participants and made the initial contacts. Participants were given a choice of meeting locations. All but one requested the first author come to their homes. The other interview took place in the care facility chaplain’s office. The interviews were recorded and then transcribed verbatim. Participants ranged in age from 70 to 95 years; two participants declined to share their age. Participants reported being married to their spouse between 20 and 66 years; two were widowed at the time of the interviews. All participants were Canadian with central or western European backgrounds, with many coming from family farming traditions. All now lived alone in a house, condo, or apartment within city limits. Two participants resided in apartments within the same multilevel care facility that their spouse had been admitted to. Analyses were conducted following the procedures of psychological-phenomenological analysis described by Giorgi (2009). This approach explores a topic as it is lived by participants, via the person’s telling of their own stories. Rather than trying to fit the data into a predetermined structure, the structure of the experience emerged from the participants’ own descriptions of their experiences. Rigor was attained by making objectivity a primary focus throughout the research process; the researchers kept their focus on the raw data, returning to read and re-read descriptions in the participants’ own words and endeavoring to bracket their own past knowledge and preconceived ideas about the phenomenon (Giorgi, 2009; Omery, 1983). Once the researchers agreed that they had a sense of the scope of the phenomenon under investigation, each transcript was divided into its natural meaning units, which were then re-described in the language of the researchers’ discipline—psychology—as each researcher clarified and reduced the interview content into concise, objective statements about the experience (Giorgi, 2009). Themes emerged from the data as the researchers asked questions and reflected on what the meaning units said about the participants’ experiences. Reliability was established by having the two authors and one additional trained researcher perform the analyses independently of each other. They then met to compare and discuss the themes that arose from the data and blended the themes into one consistent statement capturing the essence of the phenomenon of involuntary separation. Results Analysis of the participant narratives resulted in 17 categories that were grouped into four descriptive themes: the emotional upheaval that characterized the experience, connections to social and emotional support, level of access and involvement with the spouse, and carrying on after the shift from the spouse-caregiver role to being involuntarily separated. Taken together, these themes show the benefits of social connections and a continued relationship with the spouse, illustrate an emotionally overwhelming experience, and describe the need to carry on after the involuntary separation. Emotional Upheaval Above all, the shift to involuntary separation and the initial aftermath was “like a bomb dropped,” a near- overwhelming experience of upheaval and mourning. At the beginning of the transition, there were decisions to make and much paperwork to complete, as well as financial concerns, which nearly all participants discussed. Participants were concerned about whether they were making the right choices and filling out the paperwork correctly. They described the “nightmare” of finding an appropriate long-term care facility. Some expressed concern about the quality of the facility that their spouse had been transferred into. One participant, Gladys (participant names have been changed), noted emphatically that she was brokenhearted. I said, you know, he worked all his life. I’m here in a nice apartment with everything and…[tearful] he has to be in this hellhole.” Gladys and her husband were small business owners. They had been married for 60 years and were involuntarily separated for 48 months before he died. Emotional upheaval was exacerbated when the participants learned that the wise financial decision would be the legal process of involuntary separation. To some, the separation felt like an “invalidation” of their wedding vows, an abandonment at the time when their spouses needed them the most. Gladys described how, although their children, the care providers, and administrators saw the involuntary separation as a logical decision, for her it was “absolutely devastating… I couldn’t believe what I was hearing… on top of everything else, now you’re telling me that I have to be legally separated from my husband?” A few years later, the memory was still upsetting. Mae, age 70, and her dairy farmer husband had been married for 47 years, and separated for 30 months, with Mae now living independently in a condo. A series of falls and medical events led to declining health that made it increasingly difficult for Mae to care for her husband at home. When one broken bone could not be repaired surgically, it became clear that the options were for her husband to stay at home and be in bed most of the time, or to enter long-term care. For Mae, involuntary separation meant setting aside her expectations of aging together as a couple who would “share the joys and the sorrows” and an intensification of her role as caregiver. Her son understood the separation differently: Our oldest son was very much against it because he says, “Well, that’s divorce”, and of course the caregiver said, “No, no, no, it’s not divorce, it’s involuntary separation,” exactly what we said it was, you know, and - the only way that we could get assistance for it from the government, and - and it wasn’t easy, but cried lots. Perhaps one factor contributing to her son’s initial resistance was the speed at which the shift happened. Mae’s husband was admitted to long-term care “right from home, from looking after his own garden and his own yard and, I mean – we enjoyed our house. We moved together there and then…he went with the ambulance and, and, never came home after that.” In the months following the admission, Mae’s children spent a great deal of time with both their parents. However, once their father’s health stabilized, their visits became less frequent. Mae’s impression was that they did not realize “that the support is still needed, you know.” The initial period of separation was experienced by participants as especially exhausting, frustrating, and filled with conflicting emotions. Participants shared how they were simultaneously relieved and remorseful about no longer being the primary caregiver. Feelings of helplessness and experiences of sadness and depression were commonly reported. Participants cried a great deal during this time, and many cried again when they told their stories about this timeframe. Hilda, age 77, and her husband were married 56 years before he died 5 months after his admission into long-term care. Hilda continued to live in the house with large garden plots that she had shared with him. Hilda’s career in providing respite care had given her some preparation for what was ahead. Nevertheless, she felt like she was letting him down when her husband’s home-care nurses decided that he should be moved into long-term care. Hilda’s husband had encouraged her not to hesitate to place him in long-term care when the time came, but she knew he would not like it there and resisted making the call. Another participant, Richard, stated flatly that “one of the hardest things is, is to adjust to living alone and it’s not easy. I’ll tell you it’s not easy.” Richard, age 80, and his wife had been married for 56 years. She had been moved into long-term care 12 months prior. Participants who were involved in the decision to admit their spouse into care reported more feelings of guilt and failure, whereas distress and feelings of helplessness were amplified among participants who had been excluded from the decision. When asked about his thoughts during the time that his wife was being moved from their shared independent living apartment to a secure unit (for persons with severe cognitive decline), George replied, “Oh, I didn’t even know about it, so I – not much.” George thought the facility staff must have contacted his children to get the go-ahead for the move, but he was not sure. When physicians, family members, or others made the decision to admit, the caregiving spouse was left feeling powerless and hurt. Participants explained that they understood the separation was inevitable, but most wanted more time to prepare. Jean, age 75, and her husband were both immigrants from the Netherlands. They were married for 38 years, and separated for 2 months, with Jean living independently in a condo. Jean was hospitalized for a brief period and, after being discharged, was told that her friends had arranged for her husband to be admitted to long-term care while she was in hospital. She reported weeping constantly. It was very, very hard because, you know, I was in the hospital and all of sudden he was taken away … and [friends] said, well, we are doing it for you because … your health is, is suffering on account of it… in a way, yeah, it was taken out of my hands. And that was very, very hard too, because I was not prepared for it. Connections and Social Losses Connecting With Others Connections with friends and family were reported as factors that helped make the experience more bearable. Children and close friends in particular provided practical assistance, such as packing the spouse’s belongings to take to the care facility, and they also shared the emotional burden. Sarah, 95 years old, had been married to her husband for 20 years and involuntarily separated for 24 months; she had previously been widowed. Sarah had an assisted-living apartment but still walked 1 mile every day and did her own hoovering. She got by mainly on Old Age Security. Sarah, clearly delighted and appreciative, cited exactly how many times each of her children had visited from out of town in the time since her husband had been admitted. She said, “My kids, they help me…thank God for my children…my kids help me. And my daughter comes and she drives me wherever I want and she buys my grocery.” Help from others was particularly salient for participants whose caregiving load had contributed to their own ill health and hospitalizations. When their spouse’s admission to long-term care involved too many tasks for them to accomplish alone, help from others lessened the burden. Rita, age 88, came from a rural background. She and her husband had been married for 65 years; she had lived independently since their involuntary separation 18 months earlier. Rita described her marriage to her “tall, handsome, curly-haired” husband as wonderful, and the separation as challenging. She expressed gratitude toward her sons, who assisted in arranging the placement after the strain of caregiving resulted in her own hospitalization. Rita’s son still calls up to three times daily to make sure she is okay. Social Losses When support from others was available, it provided great relief to participants. However, our highlighting social connections is not intended to imply that social support was the typical experience. Equally common were reports of social and activity losses. Participants shared about loneliness and boredom. The separation robbed participants of the remaining shared activities that illness had not yet taken away. Jacob, age 84, a former entrepreneur, and newly experiencing involuntary separation, described his experience of social losses as terrible, because I sit here by myself. Usually I’m fairly sociable, not always, but usually I’m fairly sociable … and I don’t even want to talk to anybody. I get in the car, I go for a drive, she is not there. She has been there for 62 years. An educator and school administrator before his retirement, Richard emphasized that he had too much energy for a small condo so he continued to live in their house with its lush garden and his picture-framing supplies in the basement. An active presence in his community, Richard described coming home to a house that is “dead quiet.” He would check the answering machine first thing in the hope of a social interaction to bring life to his quiet house, and “then you get to where the loneliness sets in… and you just don’t know what to do with yourself. Um, you’re not sure if you want to eat, you’re not sure if you want to sleep.” Richard does volunteer work because “it’s a chance to talk to somebody.” Participants also struggled with fitting in socially. No longer identifying as part of a married couple, yet not widowed or divorced, they found it a challenge to socialize with others and felt like they no longer fit in at social events. Before Rita’s husband was admitted to care, his decreasing mobility left the two of them homebound; post-admission, Rita had time for social activities but could not find a place where she felt comfortable engaging. Rita said that, “when this happens, you don’t fit in with married people, you don’t fit in with widows. So you’re, you’re on your own. So who do you go to? So I pretty well stay in my suite.” Moreover, the uniqueness of the situation made it difficult for family and friends to understand what the caregiving spouse was experiencing, leading to heavy feelings of isolation from those who, in other situations, had been sources of social support. Exchanges became awkward, and centered on repeated questions about the well-being of the absent spouse. Sometimes children and friends did not want to hear about the more challenging days. For Richard, phone calls from a social worker were a rare social lifeline and an opportunity to share about his own responses to the involuntary separation. I have a lot of friends who suddenly have become quite distant since my wife is in the home and I am alone… Well, you get to the point where you say, well, you know, nobody calls, nobody comes, and you start to believe nobody cares… It’s the loneliness that’s the part that really, really gets to you and the fact that people who used to…be your friends, people who used to invite you over and come over are basically gone. You see them in church on Sunday and that’s about it. Access and Involvement Continued regular interaction with the spouse in long-term care made the shift from caregiving spouse to involuntarily separation more bearable. However, barriers to accessing the facility, barriers to meaningful involvement in caregiving activities, and concerns about the well-being of the spouse in their absence contributed to a considerably more difficult experience of separation. Women with fewer financial resources especially felt the impact of these barriers and reported feeling more powerless because of it. Those participants who were unable to visit regularly talked about not feeling comfortable asking others for transportation, not having the financial means to use a taxi service, and being unable to access the long-term care facility on their own during inclement weather. For these individuals, the distance from home to care facility was much greater than physical distance alone. Sarah’s summary was, “so he’s there and I’m here, and I see him once in a while and that’s it.” Sarah and her husband would have preferred for her to move into an apartment on the grounds of his long-term care facility, but she could not afford the higher fees. Conversely, those participants who had regular access and who felt comfortable at the care facility highlighted the value of continuing to be meaningfully involved in their spouses’ lives. George and his wife moved from their farm into town when they were retirement age, and then into a multilevel care facility condo when his wife’s health declined and George decided that he did not want to have to cook any more. For George, the shift to long-term care was a natural part of living in a multilevel care facility. Although his wife of 53 years went upstairs in the evenings to the secure unit, they spent their days together in the condo, regularly going shopping and out for lunch. Good access enabled participants to carry on in their spouse-caregiver roles in a meaningful way. Lily shared how continued involvement with her spouse was key to her adjustment to the involuntary separation. Lily, age 78 and married for 59 years, noted that in the 18 months since becoming separated, she had established a pattern of regularly visiting at meal times to help her husband with his meals. Lily also resided within the same multilevel care complex as her husband, which facilitated access. Lily’s visits affirmed to her that she did not “get rid of him” into long-term care; she still had a job to do each day, and she felt confident that she continued to positively influence her husband’s well-being. Lily also expressed confidence that her spouse was receiving a high standard of care from the team at the facility, where she and her husband were both treated with great kindness. This confidence was crucial for caregivers’ peace of mind. When confidence in care was not present, participants repeated their concerns, over and over. It weighed heavily on them. Many reported having trouble sleeping, especially on days when they were unable to spend much time with their spouse. Jacob said, Even [when she was] here… I’d get up, go look, oh, watch her for a while, see how she is breathing, and I can’t do that now. She’s not there. And then, are they looking after her? I don’t know. Some participants took action in response to their concerns about quality of care. Richard was eventually able to have his wife moved into a quieter, more peaceful unit. Gladys largely defined her involvement post-admission as one of advocacy, especially after her husband was injured twice in a 2-week period. Visiting and advocating for her husband’s care occupied a significant portion of her time each day. I think anyone putting their loved one in care needs to be there. And you need to not just be there; you have to … let it be known that this is your loved one, this is your husband or your father, your mother and you are going to be there. And uh, don’t ignore me ‘cause I’m not going to go away…It’s a fine line between, um, being the advocate and being there… and accepting that [long-term care staff] have, ultimately, the decisions. Carrying On In the face of an involuntary separation characterized by emotional upheaval, daily life changes, changing responsibilities, and social losses, participants felt a keen sense of needing to carry on, to keep going each day. Carrying on was described by participants as distinctly different from moving on. Richard explained that, although his wife was no longer his constant companion, she was still alive and his obligations to her remained. He had to work within the space of being involuntarily separated rather than moving on to widowhood. For some, carrying on looked like resilience. Rita described how she carried on by focusing on the particulars of each day rather than ruminating on her situation, which she suspected would immobilize her. Yet, in true prairie fashion, Rita asserted that “you pick up the pieces and you keep going again.” Gladys explained that she had been able to carry on because she prepared herself for the long-term care admission by learning as much as she could before it happened. The value of preparatory information cannot be overstated: those who felt ill-prepared stated that they wished someone had told them what it would be like. Richard experienced depression in response to the involuntary separation, explaining that: “There are days when you just get … you get, like I said, short bouts of depression set in. You’ve got to just fight it.” For others, carrying on looked more like resignation. Mae illustrated her resignation by explaining that she has no comfort or hope that things will get better. Among these participants, resignation went hand-in-hand with avoidant coping behaviors. Participants avoided favorite shared activities such as going for a drive, and cherished spaces such as the dining room table. Meal preparation, once an enjoyable activity, became a chore, the joy having leached out of it. Rita said, “I love cooking and he loved to eat. Well, now, anything’s good enough. You know, you don’t fuss for one person. I…make do. I can make soup in the kettle and eat right out of the kettle.” The strength needed to carry on was found in family, friends, a commitment not to abandon the spouse, and in religious beliefs. Those participants whose spouses were admitted to religious-affiliated facilities noted the supportive role of facility chaplains and on-site church services. Religious participants described connecting to their beliefs, noting promises of help in times of need and comfort in turning to prayer. Some had a sense that their faith was shaken by their experiences, whereas others saw their beliefs as an anchor when their sense of fairness was torn apart. Rita shared that prayer was a lifeline for her, although, for a time, she could not help but have angry prayers: “And the thought came, God, you tell us that we call upon you, you meet all our needs. Why can’t you answer my prayer that my husband doesn’t have to leave me? You know?” Jean spoke of her concerns about who would take care of her husband if something happened to her, noting: “we have no children or anything and then you think, you know, nobody to help you in that way… I shouldn’t worry about it because the Lord will provide that way too.” Discussion Participants principally described the experience of involuntary separation following a caregiving period as overwhelming and involving significant emotional and task-related burdens. Schulz and colleagues (2004) noted that the gradual emotional recovery common to the experience of being widowed is not typically seen in care facility placement; our participants’ stories of an unwilling identity shift and of numerous ongoing losses showed scant evidence of emotional recovery. Attempting to regain a sense of equilibrium following involuntary separation was a challenging, largely futile process marked by loss of identity as a “married person,” and exacerbated in some cases by seemingly trading away, or “invalidating,” that identity in exchange for financial assistance. Separated not only by physical distance, participants encountered a changed legal designation for their relationship that, to some, felt like a formal dissolution of their marriage. The shift to involuntary separation was made more bearable when social connections were available, and when circumstances facilitated a continued relationship with the spouse. Yet, these supports were rarely available: social losses were marked by feelings of not fitting in; time with couple friends felt awkward because the participant was socially not part of a couple anymore, but neither were they able to feel connected with widows and widowers in various stages of bereavement. Stadnyk (2006) described it as a kind of “married widowhood” (p. 284) where they live in “limbo” (p. 290). Uncomfortable exchanges were identified by participants as significant day-to-day struggles. Past research suggests that such feelings can discourage caregivers from engaging in social activities (Stadnyk, 2006). Although involuntarily separated spouses would surely find welcome at social groups—either for married persons or for widowers—they experienced their different status as an emotional barrier to engaging with those groups that, consequently, kept them separated from vital social support. Another factor impacting adjustment was perception of the quality of care provided at the long-term care facility. Participants who had confidence in care did one of two things: they repeatedly voiced their relief or they hardly mentioned quality of care at all. When confidence of care was not present, participants’ concerns were brought up repeatedly during the interviews. Gladys could hardly bear to think of the disparity between the comforts that their hard work had afforded them and the “hellhole” that her husband had been sent to; frustration and guilt over the unfairness of reducing him to such circumstances motivated Gladys to advocate passionately for her husband’s care. Others also had concerns that kept them awake at night. Mullin, Simpson, and Froggatt (2011) discussed a “visiting as surveillance” form of relationship with care providers, in which spouse-caregivers conducted wellness checks and took on certain tasks themselves to ensure that their spouses received needed care; this increased vigilance and involvement may help those spouses manage their distress over concerns about quality of care. The range of our participants’ experiences echoes and adds weight to past research findings, yet their stories also highlight that each person’s unique set of circumstances can play a role in shaping the course of the post-involuntary separation period. One example is the role of setting, and particularly the advantages conferred by multilevel care facilities in facilitating continued relationship and regular connection to care providers in contrast to—at the extremes—rare access, limited relationships, and worries about quality of care. Continuing in the caregiving role may help to maintain mutuality in the relationship, which has been connected to lower levels of caregiver stress (Godwin, Swank, Vaeth, & Ostwald, 2013). Although some participants living off-site also experienced a good level of access, it was contingent on income, health, and other factors impacting ability to travel. A second example of the impact of individual circumstances on shaping the post-separation experience is the intensified distress reported by those participants who were removed from the decision to admit their spouse to long-term care. These caregivers were, without warning, excluded from a crucial caregiving decision. Participants surely experienced these actions of their family and friends as disempowering and disloyal when the decision was made without their knowledge. Most participants retained the legal right to reverse the long-term care admission decision; however, each eventually recognized the necessity of placement while still mourning the abruptness of the separation. Our findings among caregiving spouses support those of Nolan and Dellasega (1999) and Reuss and colleagues (2005), who found that loss of control or feeling disempowered can lead family caregivers to feel isolated. Nolan and Dellasega (1999) recommended that health care providers assist separated caregivers by helping them identify realistic and attainable roles in their new situation. Finding a sense of underlying meaning and purpose in each day seemed to be crucial in connecting participants to feelings of hopeful resilience. Research increasingly suggests that finding meaning may help caregiving spouses; involuntarily separated spouses would likely experience similar benefits (McLennon, Habermann, & Rice, 2011; Quinn, Clare, & Woods, 2010). This study did not identify any differences in distress between male and female respondents, though further study with more balanced gender representation is merited. Our findings have both replicated and extended the existing literature on separation due to spousal admission to long-term care. Our use of a psychological-phenomenological approach to explore involuntary separation provides further evidence of convergence across different methods and different populations for involuntary separation as a uniquely challenging experience. This study sought similarities among those experiencing involuntary separation, but individuals who are in the midst of the shift may instead focus on the differences between themselves and others in their social circles who have not experienced this form of separation. This focus may amplify the apparent uniqueness of their situation and, consequently, magnify feelings of loneliness and isolation. Future research might continue to explore this tension between comparison groups. Research across broader Canadian regions and contexts may also be valuable, especially for exploring the interplay of the financial and emotional impacts of involuntary separation. Preparatory materials teaching about available resources and the emotional impact of involuntary separation may help spouse-caregivers navigate this very challenging shift. Funding None reported. Conflict of Interest None reported. Acknowledgements The authors wish to express their sincere thanks to Rev. Robert Findley, Daniel Mantei, Gwen Funk, Rev. George Brandt, and the long-term care facilities for their tremendous support. We owe a special debt of gratitude to our participants, who each shared a piece of their story with us. References Aneshensel, C. S. , Pearlin, L. I. , Mullan, J. T. , Zarit, S. H. , & Whitlatch, C. J . ( 1995). Profiles in caregiving: The unexpected career . San Diego: Academic Press. Førsund, L. 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The GerontologistOxford University Press

Published: Oct 13, 2017

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