Abstract
Being married in later life often prevents relocation to long-term care settings, but couples do relocate to these environments. Typically, this transition does not mark the end of support provided by families, especially adult children. Little is known about children’s experiences providing support in care settings when both parents are involved. This article presents an analysis of qualitative data from a study involving 20 married couples living together in assisted living (AL) and 10 adult children. It asks the following: (a) What are children’s support experiences when parents relocate to and live together in AL? (b) To what extent does the AL context influence their experiences? Despite having a “heavy burden” from “double the work,” children were relieved to have both parents in one place. Children expressed concern over privacy, “tight quarters,” spousal caregiving, and keeping their parents together. Findings have implications for future research and policy and practice.
Assisted living (AL) is one of the fastest growing long-term care (LTC) options for older adults in Western nations. In the United States alone, nearly one million individuals currently reside in these nonmedical, community-based living environments (National Center for Assisted Living, 2008), which typically provide shelter, board, 24-hour protective oversight, and personal care services (Hawes, Rose, & Phillips, 1999). In principle, AL residences are midway between living at home and in a nursing home and allow individuals to “age in place” by maximizing independence and altering support as needed (Ball et al., 2004). Being married in later life generally prevents or delays relocation to residential care settings (Carrière & Pelletier, 1995), but when couples’ collective needs outweigh their abilities to meet them, some move to AL, and it is often with the assistance and continued support of their adult children (Kemp, 2008).
Although highly outnumbered in LTC settings, the aging of the population and the increasing onset of late life disability lead some scholars to predict an increase in the number of couples in these environments (Gladstone, 1992). Current figures are not well documented, but a recent survey of AL residences in the 10-county Metropolitan Atlanta area (Kemp, 2008) found married couples living together made up only 6% of the area’s resident population. However, three quarters of homes reported having or having had couples living in their residence in the recent past.
Couples living together in these settings is an interesting phenomenon because their transitions to and lives in residential care are both individual and shared—a fact that must be taken into account as spouses and their families negotiate their lives and relationships (Kemp, 2008). Many adult children with parents in these settings provide support to one parent and these experiences are documented in existing literature (for a review, see Gaugler & Kane, 2007). Yet those who support both parents in AL may have different experiences as their support activities involve meeting parents’ individual and shared needs. This article draws on data from an exploratory qualitative study to examine these adult children’s support experiences.
Conceptual Backdrop and Research Context
A Life Course Perspective
This work is informed by a life course perspective, which is useful when examining family ties and the provision of informal support (see Connidis, 2010; Connidis & Kemp, 2008). Life course scholars highlight the interdependent nature of social life and of social relationships, suggesting that throughout the life course, individual transitions, including health and residential transitions (changes), affect more than the individuals directly experiencing them (Elder, 1998). Within families, this situation means that whether gradual or sudden, transitions often require negotiation by various family members within and across generations (Connidis & Kemp, 2008). For instance, a change in a spouse’s need for support undoubtedly influences both spouses’ lives and if present, adult children, and potentially other kin.
Life course theorists also draw attention to context (Elder, 1998). Settersten (2003) for instance, suggests that “human lives must be understood in light of the many social spaces and inter-related systems in which they are embedded” and that “matters of ‘place’” should be “taken seriously” (p. 39). Thus, when studying couples and their adult children in AL, the facility context, including the formal care setting’s physical, social, and care environment, is of analytic import.
Families and Assisted Living
As suggested above, the move to formal care settings, including AL, does not mark the end of informal support provided by families (see Gaugler & Kane, 2007). Rather, taking a longer view, the transition can be seen as part of the “caregiver career” (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). Families, especially adult children, are an important part of the decision to move to AL and the relocation process (Ball, Perkins, Hollingsworth, Whittington, & King, 2009). Many families continue to provide social, emotional, and instrumental support in AL, which influences quality of care as well as resident well-being (Kemp, Ball, Hollingsworth, & Lepore, 2010; Kemp, Ball, Perkins, Hollingsworth, & Lepore, 2009) and quality of life (Ball et al., 2000).
A relative’s relocation to AL can have both positive and negative outcomes for family members (Gaugler & Kane, 2007). Feelings of not only relief (Liken, 2001) but also of guilt and stress (Seddon, Jones, & Boyle, 2002) following the transition are documented in the literature. The latter outcome reflects family members’ continued involvement. Likely reflecting a difference in frequency of support, Port et al. (2005) found family members of those in AL experienced more burden than those of nursing home residents.
In recent reviews of literature on families in LTC settings, Gaugler (2005) and Gaugler and Kane (2007) identified several dimensions of family involvement in AL including visitation, the provision of socioemotional support, monitoring and advocacy as well as assistance with activities of daily living (ADLs), such as bathing, dressing, and toileting, and instrumental activities of daily living (IADLs), such as transportation, shopping, medication management, and laundry (see also Ball et al., 2000; Ball et al., 2005). Port et al. (2005) documented family members’ involvement in medical monitoring and monitoring resident’s well-being.
Research indicates that the nature and degree of family involvement in LTC settings vary and are often tied to caregivers’ characteristics and the meanings they assign to their roles (Dupuis & Norris, 2001) as well as resident characteristics (see Gaugler & Kane, 2007). For instance, in a 1-year longitudinal study set in Oregon AL residences, Gaugler and Kane (2001) found that women received more help than men and that residents whose family lived closer received more types of assistance than those with families living farther away. Meanwhile, older and frailer residents received help with a wider range of ADLs and IADLs. Although 7% of residents lived with their spouse in this study, as with other studies, it is unclear if or how this scenario influenced informal family support or more specifically, adult children’s support experiences.
Couples in Long-Term Care Settings
Existing work on couples in LTC settings suggests that their experiences may differ from those there without spouses (Gladstone, 1995a, 1995b; Kemp, 2008; Moss & Moss, 2007). For example, in Gladstone’s (1995a, 1995b) study investigating the experiences of married people living in or having a spouse in nursing homes or homes for the aged in Canada, some individuals living with their spouses reported that the presence of other residents and staff interfered with physical and emotional intimacy. Additional analysis reported that limited space and sharing the same room meant some spouses “got on each other’s nerves,” but others found the LTC setting afforded them more opportunity to socialize and be away from their spouse (Gladstone, 1995b, p. 57). Gladstone (1995b) also documented spousal support: 57% and 27% of those living in LTC settings reportedly assisted their spouse with ADLs and emotional support, respectively. Kemp (2008) identified similar types of spousal assistance in AL and found that some spouses restricted their social activities because of their perceived spousal responsibilities. Meanwhile, further highlighting the potential challenges and benefits associated with couples in these environments, a recent study of men in LTC settings found marriage both prevented and created social isolation (Moss & Moss, 2007). Ultimately, however, how couples’ unique experiences in AL might influence adult children’s support experiences remains unexamined.
This work addresses a literature gap and is part of a wider project aimed at understanding the phenomenon of couples living together in AL from the perspectives of spouses, adult children, and administrators (Kemp, 2008). In previous analysis examining couples’ pathways to and lives in AL, adult children were conceptualized as “enabling resources” because they were central to the relocation process (p. 240). Couples’ pathways to AL typically involved a major health transition in one or both spouses. Thus, the need to relocate was either “synchronous” or “asynchronous” (p. 239). In other words, the move was made either because both spouses needed assistance equally or (more commonly) because one spouse needed support. The degree of synchronicity influenced couples’ interaction patterns as higher functioning spouses tended to limit social engagement in the facility in order to be with and/or provide care to their spouses. This scenario concerned administrators and adult children and reinforces that idea that there are unique experiences associated with supporting couples in AL. With this observation as a starting point, the present analysis asks the following questions: (a) What are adult children’s support experiences when parents relocate to and live together in AL? and (b) To what extent does the AL context, including the physical, social, and formal care environment, influence support experiences?
Method
The Older Couples in Assisted Living Study
Data for this analysis come from the “Older Couples in Assisted Living Study,” which was conducted between 2005 and 2006 and involved two types of data collection and samples. First, the author and trained graduate research assistants conducted telephone surveys with administrators from all AL residences with 16 or more beds in the 10-county Metro-Atlanta Area in Georgia. Of the 131 residences, 105 participated (80.2% response rate). The survey was a mini-census of couples (numbers, ages, facility tenure, etc.) and also asked about the benefits and challenges associated with couples residing together in AL. In residences with couples, administrators were asked for permission to contact couples. Those who gave permission provided names and contact information. These couples were invited to participate in interviews. This strategy yielded a convenience sample of 20 older married couples. At the end of each interview, couples with children (n = 19) were asked for permission to contact their children. Eleven couples provided their children’s names and contact information. Ten adult children (representing eight couples) agreed to participate. Those who declined participation said they were too busy to be interviewed.
Couples and adult children were interviewed separately. The semistructured interviews lasted between 30 minutes and 4 hours and were digitally recorded and transcribed verbatim. Interviews explored each couple’s marital and family history, residential history, pathways to and life in AL, as well as plans and concerns for the future. Data for the present analysis drew on questions about couples’ daily lives and children’s support routines and activities. Prior to collecting data, the study was approved by the Institutional Review Board at Georgia State University. To ensure anonymity, pseudonyms are used.
Sample Characteristics
Married couples
The sample of older couples was drawn from 11 facilities across four counties. Couple participants ranged in age from 66 to 94 years with husbands and wives having median ages of 86 and 85, respectively. Three couples were African American; the remaining were White and of European descent. Participants lived in facilities ranging in capacity from 28 to 100 residents. Four couples lived in not-for-profit facilities, but all were private-pay with monthly fees for couples ranging from $2,800 to nearly $11,000. None had long-term care insurance.
Adult children
The adult child sample included five daughters, four sons, and one daughter-in-law, representing eight couples (one couple’s son and daughter participated and another couples’ son and daughter-in-law participated). This group ranged in age from 45 to 68 years. One child, a son, was African American. A majority of adult children were married at the time of the interview; two were divorced. All adult children had children of their own, including three with dependent children in their households. Three were in the paid labor force and all were college graduates. Two participants lived out-of-state at the time of the study but had siblings living near their parents. The remaining adult children lived within a 15-minute drive of their parents and tended to be in regular, frequently daily, contact either in person or by phone. All had parents who wanted to remain together, but whose cognitive and/or physical needs and abilities were, with one exception, mismatched or “asynchronous” (Kemp, 2008, p. 239).
Data Analysis
As the sole interviewer and transcriber, the author became intimately familiar with the data and engaged in analysis throughout the data collection process. Following each interview, detailed notes were made, paying particular attention to dominant themes and patterns and exceptions. Analysis continued inductively as the transcripts were read and reread. In the initial stages, codes were identified in a process called “open” or “initial coding” to sort the data into basic categories (Strauss & Corbin, 1998). For example, visiting, checking-in, advocacy, relationship history, and interaction patterns. Next, transcripts were reexamined for purposes of “focused coding,” which is a more selective, analytical, and conceptual form of coding (Charmaz, 2006). This process identified similarities and differences within and across cases and categories as well as their intersections. The qualitative analytic computer program NVivo7 was used to help store, manage, code, and analyze the data.
Findings
Accounts from those supporting both parents echo existing literature on family involvement in AL. Yet the data suggest this group of children have some unique experiences related to supporting couples in these settings. In what follows below, I present findings on their support activities noting the similarities such as help with IADLs and differences, including the degree and nature of support activities, when compared with those supporting an individual family member. Throughout, I consider how adult children’s informal support is influenced by the AL settings’ accompanying physical, social, and care environments. I begin by examining the relocation process before turning to consider children’s support in AL.
Relocation
Parents’ transitions to AL were part of their adult children’s support experiences. All reported experiencing difficulties related to supporting couples rather than individuals in later life that surfaced with one or both parents’ failing health. When their parents could no longer manage in their own homes or temporary solutions such as living with them was no longer feasible, adult children faced the challenge of meeting their parents’ collective needs, even though individually they were often very different. Couples’ collective needs were ultimately determined by those of the frailer parent and the desire to keep them together. This scenario created challenges in AL and permeated the relocation process. In all cases AL was chosen because it met the frailer parent’s needs.
The “problem” of “level of infirmity.”
Describing the search for a place where his parents could be together, the Morgans’ son identified what he referred to as the “problem” of “the level of infirmity between the husband and wife.” His father had been hospitalized for a stroke and his mother, although independent, was too frail to be his sole caregiver. He explained, “We found a wonderful place, not an assisted living facility, but a wonderful [independent] facility. My mother would qualify, but my father didn’t.”
Hillary, Mr. and Mrs. Little’s daughter, reported a similar challenge when she and her brother realized the burden of care for their mother, who had been diagnosed with dementia, had become too much for their father, and they had exhausted all options for keeping them in their home. Hillary said,
We looked at senior housing that I thought would be just great for my father, but didn’t offer my mother anything. I really thought that that was not a good situation because unless my mother, who was the frailer of the two, was taken care of, that really wasn’t going to relieve him of the burden.
Hillary and her brother decided on AL, which she felt was a compromise. Reflecting on their choice, she commented,
I don’t think I would change anything with their living situation. I think it’s as close as we could get. I would probably have a few more active people there for my father to interact with, but you know, it’s kind of hard. You have to decide what your priorities are and then try to make it work for both of them.
Hillary was one of five child participants who felt AL was not ideal for their higher functioning parent, but in the absence of a perfect solution, it was the closest thing.
Finding adequate space
Despite compromise, once families and couples decided on AL, finding a suitable residence was challenging. Couples are minorities in AL. This demographic reality is reflected in AL residences’ physical designs, particularly with regard to the size of residents’ apartments/rooms and configuration of space. According to the Blackmans’ son, Eugene,
One of the hardest things was finding, I’ll call it a suite, for lack of a better word, for two. You could very conveniently find a single room with two beds, but to find a room or a suite, they are there, but they are very limited.
The Bridgemans’ daughter, Janice, explained that during her search some homes
pretended that two people could be in the room. It sounds great when you don’t have any furniture in there. . . . There were a couple of places, I just could not leave my parents. I kept looking at the numbers and thinking, “These are much better rates,” but I could not walk away and leave my parents there.
As suggested above, children found AL settings willing to accommodate their parents, but the preferred environments were most often private-pay, for-profit, corporately owned homes with what they defined as “high” monthly fees. A few couples were able to pay high fees without worry, but money was an issue for others and determined which AL was an option and for how long. Options depended on couples’ finances as none of the children provided financial support.
Supporting Couples in Assisted Living
Consistent with previous research, by their own accounts and those of their parents, relocation did not mark the end of children’s support. Yet owing to the services provided in AL as well as care provided by spouses, reports of children assisting with ADLs were infrequent. Only one son who lived 5 minutes from his parents reported providing ADL assistance. He helped his father (who required more support than the facility could provide) with bathing.
Similar to those with an individual relative in AL, all children reported supporting their parents by visiting and checking-in. Children provided social and emotional support, oversaw financial matters, and managed health care. In several cases, when facilities charged a fee for medication management, children attempted to reduce costs and helped by ordering medications for parents to self-administer. In two instances where one of their parents could no longer be supported by the formal support offered by their AL residence and the family’s informal support, children arranged for and oversaw private sitters and hospice. More generally, children monitored their parents’ health and care and advocated on their behalf acting as “an interested party” or “a squeaky wheel” when they felt parents needed different or additional formal care. Children in close proximity frequently provided transportation or shopped.
The nature and degree of involvement varied from overseeing everything in person on a daily basis to regular phone calls with annual or biannual visits. Much of the variation depended on the presence or absence of other siblings, work and family obligations, geographic proximity, and relationship history. It also depended on parents’ specific needs and behaviors.
“Double the work.”
Despite the aforementioned parallels with those supporting an individual parent, these adult children felt that the provision of support to couples was somewhat different. The magnitude of responsibility was one difference. In the words of one son, “If you had either one or the other—that would require a certain amount of time, but having two of them can mean double the work. It requires twice as much time.” An only child, the Bridgemans’ daughter, Jill, had been on a leave of absence from her job for more than 2 years. She explained,
You know because when they have to go to the doctor, it just depends or if they’re in the hospital. . . . I do all of their medicines. I prepare all their medicines, I work with the VA and have both of them getting medicine . . . in different divisions. . . . I mean that’s like a daily, trying to work with them, organize the medicines, dispense the medicines, all the insurance, all their financials. You know, I’m doing that all the time . . . I spend a lot of time getting things that they need.
For some children, caring for couples was extra burdensome because their parents rarely required the same type of support at the same time. Most felt that someone was always in need and a crisis was around the corner. One child noted,
Having two people in assisted living is almost like they take turns. One does fine and the other one falls apart. The healthy one keeps it together until the other one bounces back and they usually fall apart. So I have a motto that any day without a crisis is a good day.
Adult children summed up their experiences using words such as “burden” and “stress” but also felt AL had “saved” their “life” by alleviating some, but not all, of their work and worry.
Spousal support: A comfort and concern
Spousal support did not end with relocation and created unique situations for some adult children. Children perceived spousal support between their parents as both a comfort and a concern. Children were relieved to have their parents together and viewed them as having built-in support that other uncoupled residents do not have. Children explained, “They’re each other’s companions” or “They’re looking out for each other and I would be much less comfortable with just my dad living there.” Even historically tumultuous relationships involved spousal support. One son said, “It’s a love-hate kind of relationship [but] they’ve been together so long, they couldn’t do without each other.”
Companionship was important, but in most cases, the move to AL was intended to relieve spouses of the physical and emotional burdens of caring for one another. Children expressed concern over spousal caregiving activities they considered “problematic” or “risky” such as help with ADLs or certain IADLs, especially medication management. Consequently, out of concern for the emotional and/or physical well-being of one or both of their parents, the majority of children (often in collusion with facility administrators) encouraged their parents to relinquish such caregiving duties. In a few instances, intervening in spousal caregiving was intended to promote individual privacy and protect one parent from being humiliated in front of other residents in an otherwise communal or less-than-private setting. This was the Greenburgs’ situation. Their daughter, Angie explained,
So initially, my father was doing my mother’s medication. Well, it became a source of contention because he would say, “Did you take your medicine yet? Did you take your medicine yet?” He would embarrass her even in front of people. And she said, “I don’t necessarily want people to know I’m taking medications.” . . . We kept saying, “Leave her alone. Just let her take it.” . . . Finally I said to my brother, “For whatever it is per day, let them [AL staff] do the medication.”
In this situation, Angie’s father acquiesced.
Physically demanding spousal caregiving activities such as toileting, bathing, or dressing involved what children viewed as high levels of physical risk with potentially serious outcomes. When these types of care were given, children tried to renegotiate the circumstances. For example, after a number of falls related to taking sleeping pills, the Morgans’ son, Richard stepped in: “So we just have made a rule with Mom and Dad that he’s in bed before he gets his night medicines because he’s going [to pass] out. She can’t handle him then . . . it’s dangerous for them.” Like Mr. Greenburg, Mrs. Morgan complied, but compliance was not universal.
Dementia and/or a continuation of life-long habits were contributing factors that made intervention difficult or likely to fail. In these situations, adult children resigned themselves to accepting the risk and lived in fear of what might happen. For example, although both parents were in wheelchairs, the “little and very frail” Mrs. Gold routinely helped Mr. Gold with toileting. Their son, Russell, elaborated,
We talk about the fact that it is just a time bomb waiting to happen where they both fall over. They’re both piled up on the floor. She forgets that she’s not supposed to help him and he asks her and I don’t know, I guess he forgets. Well, I don’t even know if he thinks about it. He’s not thinking. . . . That’s been very frustrating because this is a dangerous situation, but they’re not going to stop.
For a few couples the accident had already happened. Like other caregiving spouses, Mrs. Peters felt she was the best person to care for her husband and complained that staff response time was not as quick as they would like. According to their son, after several years of trying to get his mother to stop toileting and bathing his father in their AL, her activities came to an abrupt halt when she fell showering him. Thereafter, their son threatened to separate his parents explaining, “I told my mother that was going to have to happen if she didn’t change.” The threat worked.
In settings that do not always offer personally meaningful activities, spousal caregiving contributed to resident’s sense of self-identity and purpose (Kemp, 2008). As a result, despite fearing the potential negative outcomes, a few adult children were conflicted or hesitant about intervening in spousal caregiving. For example, referring to her father’s caregiving, Mary, the Rossis’ daughter, explained,
He’s told me that the less he has to do, you know, he needs to feel needed. He has things that he does with his life and if we take stuff away from him, he feels, you know, it’s not a good feeling for him.
Mary then described the effects of his caregiving saying, “He’s taking care of her and I think it’s taken its toll on my father.” However, from her perspective having a sense of purpose outweighed the negative risks. Spousal caregiving kept this couple and nine others together, allowing them to stay in AL beyond the point an individual without such support could manage.
Mediation
Unlike those with an individual relative in AL, children sometimes found themselves in the roles of marriage “counselor” or “mediator.” Health conditions, including dementia, left a few spouses with altered personalities, or in some cases, the mere passage of time eroded past levels of patience. Referring to her mother’s impatience and negative response to her father’s physical decline, the Davis’ daughter explained,
She’s grown incredibly impatient over the last year and a half. I have to stop her privately and say, “Mom, don’t you think that he would move faster if he could? He can’t help it.” . . . She just thinks that he’s doing it to be spiteful, just to get a reaction. . . . I wouldn’t put it past him in certain areas in previous years to do things just to get a rise out of her, but this is not one of those times.
Memory problems were sources of frustration and tension between spouses and sometimes required mediation. For example, the Golds’ daughter, Lauren, felt it was routinely necessary to remind each parent of the other’s limitations:
I have to say to my mother sometimes, “You know, Mom, Dad doesn’t remember. You know, it’s from the Parkinson’s or from his memory problems or from the medication.” “Oh, oh. Yeah.” They each forget that the other one has issues.
The Gold children also found themselves mediating their mother’s jealousy of their father’s care. The nature of AL life (i.e., being in close quarters) meant she was present for all of her husband’s care activities. Relative to her care, Mrs. Gold felt her husband was receiving care superior in quality and quantity to her own. Lauren and her brother constantly reminded her saying, “Dad needs more care than you do.” Given their mother’s short-term memory problem, this task was ongoing.
In the Morgans’ case, a stroke and poor health left Mr. Morgan with a severely altered personality. According to their son, once “mild mannered” his father was now hostile toward his mother, the healthier of the two. Richard explained,
His attitude is very poor. A lot of it has to do with the move. It’s not home and that’s just always going to be the way it is. . . . He is a different person than I grew up with in terms of how he treats mom. . . . Sometimes he can get really ugly to her and I’ve found myself, I’m the counselor now in a role that I never envisioned myself doing as he’s aging.
Relocating to AL made the situation worse, but as will be seen, also provided some relief opportunities for Richard’s mother.
Being in AL exacerbated, but sometimes simultaneously, relieved tensions between spouses and made adult children’s support activities more and less difficult. In some cases spouses “got on each other’s nerves” even more because they were required to live in a smaller space than what they were accustomed to sharing. One son describes his parents’ living space saying, “There’s two of them, not one and that’s the one thing about the facility. One person, it’s quite adequate, I think. But the rooms, you know, for two people, are fairly small.” Consequently, encouraging one or both parents to socialize independently was common.
Promoting social engagement: “Get out and go.”
AL life meant spouses were around one another constantly except for those who engaged in separate activities. For spouses who were willing and able, AL provided access to alternative social outlets. It introduced the possibility of meeting other residents, participating in organized activities, and going on outings. All homes had common spaces such as a library or sunroom, where residents could get out of their rooms and engage in solitary activities such as reading. In general, adult children were pleased by these features, viewing them as positive for their more active parent. Yet they felt it necessary to encourage parents’ activity. Mr. Morgan explained,
Her being out of the room is a big issue for him. And, I keep encouraging her to get out of that room and do your things all the time. You can’t, I mean, this is what he chooses to do, sit here and watch TV, you know and if I call him and she’s not in the room, well he’s just, “She’s never here when I need her.” He would be happy for her to just sit there in that recliner beside him and do nothing else. So, I think for her own mental well-being, she’s got to get out and go.
With one exception, couples did not have access to a car or the ability to get out of AL either individually or together. Actually getting off premises was dependent on the home’s activity offerings, family members, and the community as well as a parent’s willingness to leave the other.
Children whose parents either isolated themselves from other residents or who sacrificed activities to be with the other expressed concern. These children encouraged their parents to engage in separate activities. As the Golds’ daughter, Lauren, explained,
My mother these days feels that she has to be with him and help him, which she doesn’t, but she feels that way. So, she spends most of her day sitting with my father. . . . My mother has isolated herself because she feels she must be with him. We have conversations with her about getting out [of the room by herself], I would say at least 5 times a week.
Reminders took the form of a question with Lauren or her brother asking, “Mom, did you get out and do something for yourself today?” The Davis’ daughter experienced some success in this regard, but reported that convincing her mother was a lengthy process. Eventually her mother “develop[ed] the ability to trust that [her father] was not going to self-destruct—that she could physically leave him to go play bingo or to go walk around or do whatever.”
Creating opportunities for individual privacy
Concerned about their parents’ individual privacy, two children actively devised ways to give them time away from one another outside the facility. The Davis’ daughter explained,
I schedule their doctors’ appointments at different times so I can get them alone in the car. He’ll vent to me or she’ll vent to me or whatever in that private space. It’s kind of our little sanctum. Usually when I go over there, they’re both in the room.
During her parents’ visits to her home, she typically sat them in different rooms as a way of giving them additional privacy. Not all children were proactive in this way and not all couples were given or desired opportunities for individual privacy.
Keeping them together
Keeping their parents together was a focus of adult children’s support activities. The “problem” of “level of infirmity,” further physical or cognitive decline, as well as limited finances posed potential challenges to keeping their parents together in AL. Facility rules and practices and the accessibility of private care and/or informal support as well as availability of resources facilitated keeping couples together and also created barriers.
Managing different levels of infirmity
As with the decision to move, doing so was complicated by the different levels and types of decline in their parents. The ability to keep them together, particularly when one spouse should “by rights be in a nursing home,” was dependent on facility policies about frailty, spouses’ needs and abilities, as well as children’s involvement and resources. The Bridgmans’ daughter, Jill, described the separation issue,
I have thought about trying to separate them at some point, but I finally decided you can just forget about that. . . . My dad would be happy to go to another facility, but he’s not going to leave Mom and Mom can’t go anywhere unless it’s to a nursing home.
At the time of the study, Jill arranged for 10 additional hours of private care per day provided by outside sitters. On top of facility fees, these sitters cost between 8,500 and 9,000 dollars per month. She commented, “I say thank you every day that I’ve had this chance to have [the private sitters] because otherwise, it’d be me.” Not everyone was able to pay.
The Peters’ son faced a similar challenge. He explained, “I could have put my father in a nursing home 6 months ago. The dilemma of separating him from my mother was what stopped me.” From their daughter-in-law’s perspective, “They’re beyond assisted living . . . the only reason they haven’t been asked to leave is because my husband is there every day.” With the AL’s blessing, his daily caregiving activities and Medicare-funded hospice allowed the couple to remain together in place. Without these activities, separation or relocation was inevitable.
Reflecting on the future, this group of adult children expressed concerns about additional health declines in one or both parents. As suggested above, one reason very frail spouses were able to remain in AL was because of the presence of and care from a healthier spouse. Yet this situation was not guaranteed. The Greenburgs’ daughter explained,
My concern would be what happens if dad fails just because he is the higher functioning of the two. It works for my parents because my dad is still pretty active. I don’t know what would happen if my dad wasn’t. What would we do?
The Jones’ son summed up his concern about his mother, the sicker of the two parents, growing more cognitively impaired:
I’m hoping my mother stays stable until the day she dies meaning I’m hoping her Alzheimer’s won’t get any worse. Because I don’t think I’d like to put her in that locked unit because if I put her in the locked unit that means my father can’t go back there, which means she’ll be separated from him.
Ultimately, keeping them together was largely, though not exclusively, influenced by their parents’ individual and collective health.
Three couples had lived in other AL settings prior to their current residence, but owing to facility policies governing frailty levels or resident behaviors, one spouse had been asked to leave. The Davis’ were one such couple. Their daughter Jane explained of their former residence, “A certain number of falls and they can’t stay there anymore because it’s a liability issue.” After her father had fallen “a certain number of times” he was asked to leave. The choice was to separate the couple or find another place willing to take both. They relocated to a less expensive home nearby, but Jane was less satisfied with their smaller space and less attentive care staff.
The cost
Although not unique to supporting later life couples, all but one adult child was concerned about the cost of AL saying, for example, “My biggest concern is whether the money is going to last and what the next step will be.” For a few children, this concern meant contemplating Medicaid and nursing home placement—a complex scenario for couples. The Peters’ son elaborated,
It’s a little difficult to go directly from assisted living to a nursing home for some reason. . . . It’s even more difficult trying to move two people. . . . I don’t think my father is going to make it that long. . . . If [he dies soon] that allows my mother, financially to stay. That extends that period of 6 months because literally, I cut the monthly expenses in half. . . . Hindsight, if I’d known at the time that this whole process started, I would have looked for a combination facility where you could go from assisted living to skilled nursing.
At the time of the study, the couple had enough money to support both parents for 6 months or one for 12 months. There was no plan in place for the future and their son hesitated to put the interest of one parent over the other before the situation dictated.
Discussion
Drawing on qualitative interviews with parents and adult children, this exploratory study offers new insights into an underresearched phenomenon. Findings yield information about the very specific scenario of adult children providing care to parents who relocate to and live together in AL. This work advances existing knowledge of later life couples, adult children, informal support, and formal LTC. As discussed below, findings resonate with and extend existing work and have implications for future research and practice.
To begin, findings highlight the importance of drawing attention to the life course notion of “linked lives” in studying informal social support (see also Connidis & Kemp, 2008). What little research that exists on later life couples often focuses on the dyad, overlooking the fact that these relationships do not occur in a vacuum. Yet acknowledging interconnectedness is pivotal to understanding older couples’ experiences and those of their adult children. Although not unique to AL, these adult children faced the challenge of supporting each parent individually by meeting their needs while attempting to take into account the other’s as well as their shared needs. Balancing the needs of each parent and the couple often involved accepting compromise in ways that meant sacrifice for one parent (usually the healthier one). Consequently, future research would do well to examine the implications of this balancing act for spouses, families, and AL administrator.
Adult children’s desire to keep their parents together in the face of one or both parents’ failing health led them to AL. Finding a suitable facility was complicated by the availability (or lack) of settings able to adequately accommodate couples. Regulations governing AL in Georgia stipulate that resident rooms “must have at least 80 square feet of usable floor space per resident” (Personal Care Homes: Georgia Code Annotated §31-2-4 et seq.; §31-7-2.1 et seq.; Georgia Regulations §290-5-35.01 et seq.), but it is unclear to what extent residences follow this guideline and how couples factor into the equation. What is certain is that couples are not the primary demographic, which further highlights life course principles regarding the import of time, place, and contexts (Settersten, 2003). In a largely for-profit industry, children perceived higher fee residences as having larger spaces and suitable floor plans for couples than those with lower fees. As with individuals, access to material resources influenced the range of options.
Once in AL, adult children and their parents reported providing social support activities documented in the literature, including monitoring, checking-in, and IADL help (e.g., Ball et al., 2000; Ball et al., 2005; Port et al., 2005). These children also reported feelings of relief and of stress with the relocation (see also Liken, 2001; Seddon et al., 2002). Nevertheless, there were notable differences compared with existing work on children supporting one parent. For example, only one child reported helping with an ADL, which speaks not only to both the care provided in AL but also to the provision of care between spouses.
Another difference adult children reported when comparing themselves with those supporting an individual parent was the perceived amount of work and the feeling that couples are “double the work.” Their work involved additional support tasks not reported in the family support and AL literature. These tasks included mediating, counseling and negotiating spousal caregiving, encouraging activity, and keeping their parents together while promoting the well-being of each. These differences require further investigation with a larger sample, but suggest that adult children supporting both parents in AL might require additional and different types of assistance and information from AL residences, financial planners, and health care providers.
Findings further indicate that the AL physical and social environments do influence adult children’s support experiences when parents live together in these settings. For example, the additional types of emotional and social support adult children reported providing stems largely from the communal nature of the environment, the size of apartments, and the opportunity to interact with others. In some cases, these features of AL exacerbated problems such as a lack of privacy, but offered a possible reprieve for socially isolated parents or couples. These issues are identified in the LTC literature on marital couples (e.g., Gladstone, 1995a, 1995b), but not in the context of understanding adult children’s experiences. Findings show that dedication to one’s partner, paired with small living spaces and the communal nature of AL life, meant most children’s support experiences included encouraging parents to take advantage of social opportunities. These conditions prompted a few children to actively create opportunities for their parents’ individual privacy. AL care staff and administrators should communicate with couples and families to develop ways to help couples accommodate parents’ individual and shared social and emotional needs. Working with individuals and couples to identify and promote their optimum levels of social engagement and individual privacy should be a goal for families and AL administrators to work toward.
The present study identified spousal caregiving as an important form of informal support in AL (see also Gladstone, 1995b). In LTC research, informal support is typically understood as support provided by those living in the community. Although often overlooked, findings suggest that spousal support, including caregiving, is a key dimension of couples living together in AL. It provides continuity in the face of change and is a meaningful activity, which not only influences couples’ experiences but also those of adult children. Children perceived spousal support positively because their parents had one another, but as was the case for the Peters and the Golds, spousal caregiving also was cause for concern. The potential for physical harm threatened their parents’ ability to remain together.
In theory, AL is an environment of managed risk that attempts to maximize autonomy and independence (Utz, 2003). Spousal caregiving can be seen as an area of managed risk. Given the meaningful nature of spousal care for couples (including its importance for continuity and also independence and privacy), families and AL administrators and staff should work together with spouses to devise ways to make care activities less risky if possible. The Morgans’ son’s strategy of having his father take his sleeping pill after his mother helped him to bed is a good example of compromise. Although not considered, another example could have been the use of a shower seat, which might have prevented the Peters’ fall in the shower.
The “problem” of “level of infirmity” was a key issue in understanding couples and their children’s experiences. This problem extended beyond finding a suitable home to couples’ ability to remain in AL. In the state of Georgia, regulations state that homes may not admit or retain individuals who are bed-bound or require continuous medical or nursing care and treatment (Personal Care Homes: Georgia Code Annotated §31-2-4 et seq.; §31-7-2.1 et seq.; Georgia Regulations §290-5-35.01 et seq.). However, if short-term medical support is required, residents can purchase or arrange for additional outside services and homes can apply for waivers. Some homes follow this regulation closely and some have retention rules of their own (such as those about frailty and the number of falls). Thus, along with spouses’ health status, couples’ ability to remain together depends largely on a given home’s philosophy and practice surrounding resident retention in the face of decline and their willingness to allow additional formal and informal support. The importance of linked lives (Elder, 1998) is further underscored in cases where couples must move out of a given AL or be separated because one spouse does not comply with their AL’s retention requirements, whether dictated by regulation or by facility-specific policies.
As with all adult children, their parents’ futures were uncertain. For this group, however, the commitment to keeping their parents together added additional pressure. Despite anticipating the possibility that their parents might not be allowed to remain together in AL because of deteriorating health or financial resources, most did not have plans in place. They expected reactive (rather than proactive) responses largely because they foresaw barriers to keeping their parents together rather than solutions (e.g., the Peters’ son). Given these experiences, it is apparent that current institutions and LTC policies and practices do not take into account the implications of “linked lives” (Elder, 1998) and differing levels of need within couples. Future work should consider the implications of placing one spouse’s interests above the other’s and identify how to address this situation in ways that support older couples and their families.
Study Limitations and Additional Directions
The study and its data are not without limitations. First, the couples’ sample was small and obtained through contact with administrators—not all of whom permitted contact with couples in their facilities. Thus, although purposive, there are issues of selectivity in terms of who was contacted and where, as well as who accepted. Next, unfortunately, not all couples with children had a child willing to participate, which generated a small and rather homogeneous sample of support providers to (with one exception) “asynchronous” couples (Kemp, 2008). Children’s support experiences might be different when parents have similar needs and abilities. A further limitation is that couples selected which children I could access. The primary family member was chosen in all but two cases, but others are apt to be involved in supporting their parents (Dilworth-Anderson, 2001). Another and related limitation stems from the use of one or two family members to represent what is going on within a given family or sibling network. This practice is problematic as it overlooks differing vantage points and the possibility of conflicting reports (Connidis & Kemp, 2008). Another limitation is the focus on married couples to the exclusion of other intimate relationships, which may involve different support experiences. Finally, the study relied on retrospective longitudinal accounts rather than prospective ones. Future research would do well to consider these support experience over time, prospectively.
As the population ages and the demand for LTC heightens and family relationships simultaneously grow increasingly diverse, additional research is needed. Future work should endeavor to better understand how familial and environmental contexts enter into the experiences of those both giving and receiving informal support across the life course and into later life, including later life couples and their family members. A better understanding of these phenomena will help guide policy and practice aimed at improving quality of life across the life course.
Footnotes
Acknowledgements
I am thankful to Frank Whittington, Mary Ball, Molly Perkins, Carole Hollingsworth, and Michael Lepore for their valuable input throughout the research and writing processes. Thank you to Shanzhen Luo, DaVette Taylor Harris, Neela Lakatoo, and Staci Williams for their assistance. I am very grateful to those who participated in the study.
An earlier version of this article was presented in October 2008 at the Canadian Association on Gerontology, 37th Annual Scientific Meeting.
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article:
This research was supported by a Social Science and Humanities Research Council of Canada (SSHRC) Postdoctoral Fellowship (756-2005-042) and prepared as part of the SSHRC-funded Social Dimensions of an Aging Population II collaborative research project.