Approximately 43.5 million Americans provide informal care to an older family member, which includes unpaid support with daily tasks when the care recipient is unable to complete essential activities due to functional limitations, disabilities, and/or cognitive impairment (Feinberg, Reinhard, Houser, & Choula, 2011; National Alliance for Caregiving & AARP, 2009). These tasks include assistance with activities of daily living (e.g., bathing, grooming, feeding) and instrumental activities of daily living (e.g., housekeeping, money management, transportation, shopping, overall health management). Because older adults with chronic conditions and limitations rely heavily on family members for assistance, many caregivers experience problems and stress with balancing caregiving demands and other life responsibilities (Feinberg et al., 2011; Hawranik & Strain, 2007). Caregivers reported that their inability to manage the extensive care needs of an older family member in the community has led them to the difficult decision of nursing home placement (Butcher, Holkup, Park, & Maas, 2001; Chang & Schneider, 2010; Gaugler, Yu, Krichbaum, & Wyman, 2009).
Caregivers describe informational and emotional challenges associated with both nursing home placement decisions and care management post-placement. Some of these challenges include inadequate preparation and lack of support from other family members and professionals, difficulty adjusting to their new role within the nursing home environment, and struggling with developing open communication and relationships with staff (Chang & Schneider, 2010; Nolan & Dellasega, 1999; Paun & Farran, 2006; Ryan 2002). The stress caused by the nursing home transition has been associated with continuing burden and physical and mental health problems that persist or even worsen months after placement (Gaugler, Mittelman, Hepburn, & Newcomer, 2009). Many caregivers continue to be involved in the management of care post-placement, and a better understanding of their needs and concerns may help decrease their stress and create a more supportive environment.
Understanding the experiences of caregivers as they undergo the transition is important, as the nursing home placement process is difficult. The challenges faced by families during this time can have lasting consequences in their ability to adjust to the placement (Nolan & Dellasega, 1999). Expectations for the caregivers’ continued involvement in care management and the changing relationship with their older family member post-placement have not been well-explored. The current case study report examines the experiences of two caregivers over the first few months following nursing home placement.
An adapted version of the Family Management Style Framework (FMSF) guided most aspects of the current study to understand how family caregivers of older adults incorporate caregiving responsibilities into everyday life within the context of the nursing home placement process (Knafl & Deatrick, 2003; Knafl, Deatrick, & Gallo, 2008; Knafl, Deatrick, & Havill, 2012). The FMSF consists of three major components, which were tailored to fit with this unique population: (a) definition of the situation surrounding care and placement, (b) management of care and placement, and (c) perceived consequences of placement. The knowledge gained from the current report can provide practical information for smoother transitions and care management.
The current report uses a case study approach of interview data from two family caregivers who participated in a larger qualitative descriptive study of 10 primary family caregivers involved in the nursing home placement process (Koplow et al., 2015). The study occurred over an 8-month period in 2012. Caregivers were recruited from four nursing homes in the Midwest. The nursing homes all provided a continuum of services, from subacute rehabilitation to long-term care. Caregivers predominately had an older family member who would be eventually residing in the long-term care or specialized dementia units and would be paying privately or using Medicaid for their stay. University institutional review board approval was acquired prior to data collection and informed consent was obtained from all caregivers. Caregivers were interviewed twice: approximately 30 to 45 days within nursing home placement and 3 months post-placement. The initial and post-placement interviews lasted approximately 45 to 75 minutes and were digitally recorded; caregivers were given gift cards after the completion of each interview.
The case study approach allows for the investigation and understanding of phenomena in a real-life context and is useful for examining evidence from alternative points of view to explain why and how certain outcomes have occurred (Creswell, 2007; Yin, 2009). The two cases were purposely selected from the larger sample to demonstrate two different caregiver perspectives of the nursing home placement process: a smooth transition and a difficult transition. A within-case analysis of the two care-givers was performed to allow for an understanding of the rich context of each individual case and to recognize similarities and differences in experiences across cases and over time (Ayres, Kavanaugh, & Knafl, 2003; Creswell, 2007; Yin, 2009). Each of the caregivers’ two interviews were reviewed systematically using the three major components from the adapted FMSF, and the identified subthemes were incorporated into the case report.
To ensure quality and rigor of the cases, the first author (S.M.K.) debriefed with others, collected thick descriptions, and maintained an audit trail and reflexive memos and notebooks (Creswell, 2007; Lincoln & Guba, 1985). Pseudonyms have been used so that the caregivers’ identities were not compromised.
The following case study narratives provide two poignant and divergent cases about caregivers’ management of care, nursing home placement, and the transition post-placement. Both cases are of a dyad consisting of a wife caregiver and her care recipient husband.
Smooth Transition: Emma and Henry
Emma was a 77-year-old Caucasian woman who had been married approximately 50 years to her husband, Henry. Emma said Henry was beloved by his children and grandchildren and they were extremely supportive of him. She described Henry as a social and charming man. Eight years ago, Henry had bilateral knee replacements that severely affected his mobility. Over the past 10 months, his cognitive status deteriorated due to a series of transient ischemic attacks (TIAs). Emma was a retired RN and identified herself as Henry’s primary family caregiver.
Emma said her main goal was to keep Henry at home for as long as possible because she loved him. Emma described the care situation as difficult to manage as Henry’s cognitive status continued to decline. She noted Henry was incontinent, confused, and often had difficulty finding the right words to express himself, which was frustrating for both of them. Eventually, safety concerns convinced her that she was unable to leave Henry at home alone, which caused her to give up her active social life. After a hospitalization for a TIA, Emma tried respite care for 2 weeks, but she ultimately brought Henry home to continue to care for him. Henry continued to have TIAs, but Emma recognized that frequent hospitalizations would not reverse or change his condition.
Eventually, with the assistance of her children and her family physician, Emma realized that it was unsafe for her to continue to care for Henry at home. She saw a psychologist, which helped her make the placement decision. Emma indicated it was her “diminishing capacity to deal with the situation that led to the nursing home placement.” She became irritable and frustrated with Henry and did not feel it was fair to him. Emma and her daughter visited several facilities, looking for one that seemed to have positive staff interaction with residents.
During the initial interview, Emma said she visited Henry daily at the facility because that was what she needed. She thought that the nursing home placement provided an opportunity for her to relate to Henry as his wife and not as a caregiver. She noted that although it was difficult to relinquish her hands-on caregiving role, it was necessary to re-establish their spousal relationship:
For example, he shaves every other day. If he hasn’t shaved, then I set him up so he can do the shaving and I check his denture to be sure that that’s okay, get him a cup of tea, but I’m really very much aware that he’s there because there are people that can do the physical care for him and as I probably already said, this is an opportunity for me to relate to him as a wife again rather than as a caregiver.
At the 3-month post-placement interview, Emma said that Henry had recently died. Henry had suffered a massive stroke and, with the support of her family physician and family, Emma decided to keep Henry in the nursing home and not transfer him to the hospital but to initiate hospice care. However, this decision made Emma uneasy. Emma’s family and the nursing home staff were particularly supportive of her during this time:
That was a long, long stretch of knowing that ultimately what was going to happen and initially I didn’t expect it would be as long as it was, but we all sort of settled into a routine…. If I was there by myself it was for very brief periods of time and one of my kids would always show up, so that certainly made it easier and of course the staff were very supportive.
Emma noted an especially difficult moment when a hospice nurse told Emma that Henry was not “actively dying,” which concerned her because she was not sure if she had made the right decision. But, a social worker gave her an end-of-life informational book and helped confirm her decision:
It affirmed my original decision, which I really needed at that point because I didn’t know whether my decision was letting [him] die, so to speak, which indeed it was, but the reasons for it were because the quality of his life had become so incredibly diminished and after a stroke of this magnitude it certainly wasn’t going to… it was going to be worse than it was before…it felt right again…I really needed that…at that point to affirm my decision.
Looking back, Emma had gained some perspective about Henry’s time in the nursing home. She believed she had 3 months of quality time with him when she visited and related to him as his wife, rather than his caregiver. Henry initially had a difficult time adjusting to the nursing home placement, but Emma believed that staff were patient with him and attentive to the needs of the entire family. Emma noted that the staff assisted in bringing out Henry’s personality, sociability, and sense of humor, which helped greatly:
Because what helped [Henry] tremendously, and I know it made it easier for the staff was he is a very, was always a very social person and he really enjoyed people…. I said at one point he was really a flirt and he could really, when he wanted to, he could really use that charm, which he did. He was well-liked on the unit. There was no question about that. So that was a good thing, and that worked in his favor…I’m sure that made people a little more tolerant.
During his time at the nursing home, Emma continued to visit Henry almost daily, remarking that her primary responsibility was always to Henry. Overall, she and her family thought they made the right decision to place Henry in the nursing home. Emma was pleased with the staff, their care of Henry, and their responsiveness to her and her family’s needs.
Difficult Transition: Lisa and David
Lisa was a 72-year-old Caucasian woman who had been married approximately 50 years to David with three adult sons. She described their relationship as a partnership in which they depended on one another, but with communication challenges that became increasingly difficult as David’s cognitive condition deteriorated. Lisa portrayed David as a “grumpy old curmudgeon” who enjoyed being at home. Although their sons were available to assist with the financial aspects of care, Lisa had a difficult time conveying the emotional challenges of being a caregiver with her family. Lisa stated that care decisions for David were her responsibility.
Lisa’s caregiving journey started when David began having seizures. He was diagnosed by a neurologist with frontotemporal lobe dementia and experienced a rapid decline in his cognitive status and ability to care for himself. Because of safety concerns, Lisa knew that David could not stay at home alone. Lisa hired a 24-hour, live-in male aide, who provided the hands-on care while Lisa continued to manage the overall health-related issues and routine. Lisa rearranged her home life, including logistically adjusting her house to support David. Despite her best efforts to manage his needs, David continued to have significant behavioral issues, such as urinating in inappropriate places and being physically aggressive toward Lisa. Lisa also noted that David’s challenging personality combined with his cognitive decline contributed to difficulty managing his care. Even with the extra help of a live-in aide, Lisa explained that care management at home was becoming increasingly troubling.
Lisa consulted a social worker and psychologist regarding her situation and did her own online research regarding nursing home placement. Although these resources were helpful, Lisa stated that the decision to place David into a nursing home was ultimately hers. When Lisa had a discussion with her sons about her decision, she felt unsupported. One favored nursing home placement, whereas the other two thought that she was “getting rid of Dad.”
Lisa finally placed David into a nursing home because she was unable to manage the demands of his daily care and his increasingly difficult behavioral issues. She selected a nursing home close to a hospital so she could more easily manage his ongoing health issues. At the 3-month post-placement interview, Lisa reported difficulty adjusting to the physical aspects of living apart from her husband and making life decisions without a partner:
So, you know, there’s just a lot of different adjustments and issues that I’m capable of doing but I wasn’t prepared to do…all at once. It was just a lot of issues all at once…so I figured I’m doing it, you know, kind of thing. But then everything else falls in, you know, all the other responsibilities.
Lisa explained at the 3-month post-placement interview that she was dissatisfied with her experiences with the nursing home. Lisa was concerned about the care being provided by the staff. She noted multiple occasions where she thought that David was not bathed and had persistent safety issues. The staff reported that David often refused care and they were unable to find ways to redirect his behavior. Lisa thought that she was unable to relinquish her hands-on caregiving responsibilities and spent the majority of her time troubleshooting the inconsistent care of the staff. As she stated:
You know, I’m still caring for him and I’m getting aggravated. You know, I’m paying—as I said—I’m paying all this money and I have to be concerned about that he didn’t shave. He wasn’t bathing. He was falling… I had the same thing here, you know, like concerns about certain things and taking care of it and here, I mean, I’m going and having concerns.
In addition, Lisa expressed concern that David’s health was declining and he was becoming increasingly isolated. She had wanted nursing home placement to assist with socialization, but found that the placement had made David turn inward. She thought that David’s disagreeable personality and depressed mood made it difficult for staff to work with him and for David to adjust to the nursing home:
He has his back towards everybody and he’s got his paper, you know. And then we were with this balloon and we’re bouncing it back and forth and he was tapping it but it wasn’t with, like, enthusiasm… I mean, he’s just…it’s like the stuffing’s been taken out of him, you know. I would say that. I don’t know if it’s a depression or it’s he’s zoned out.
Because Lisa continued to be so heavily involved in managing David’s care, she was unable to maintain a daily routine for herself. She thought the circumstances and her care burden had not improved. Lisa continued to search for a new nursing home that would provide better care, have an improved staff ratio, and alleviate her worries.
Overview of Results
Four major contextual issues influenced nursing home placement and care management: (a) the caregiver’s relationship with the older adult during the home caregiving time and post-nursing home placement, (b) the circumstances surrounding placement, (c) support systems, and (d) continued involvement in care management post-placement. The variances in these issues highlight the main differences between what leads to smooth and difficult transitions.
Both caregivers described themselves as the primary family caregiver for their spouse with cognitive impairment and ultimately responsible for all management decisions. During the time of home management before placement, their relationship was no longer a spousal partnership, but that of a caregiver and care recipient. For each caregiver, relinquishing the hands-on responsibilities of caregiving to the nursing home staff was difficult. In the smooth case, Emma was grateful that she was able to let go of some of these direct care-giving tasks and return back to their spousal partnership. In the difficult case, because Lisa was dissatisfied with the nursing home staff care, she was unable to relinquish hands-on caregiving, thereby not having the opportunity to consider a different relationship with her spouse.
Circumstances Surrounding Placement
During home caregiving, Emma and Lisa both prioritized their husbands’ needs above other life responsibilities. Due to the responsibilities of their spousal caregiving obligation, both Emma and Lisa continued to maintain their husbands at home, even when it was unsafe. Similar circumstances were the catalyst for the nursing home transition in each case: the caregiver’s inability to continue managing the relentless demands of care. Both caregivers noted that the time and decision to place was ultimately their responsibility.
Emma and Lisa had varying levels of support systems prior to and after placement, which included familial and professional help. Both consulted health care professionals prior to placement. However, in the smooth case, Emma had access to many additional support systems and resources that validated her decisions and ultimate placement of Henry. Emma’s background as an RN was likely also helpful. After placement, nursing home staff were receptive to both Emma’s and Henry’s needs and they enjoyed a collaborative relationship. Nursing home staff’s attentiveness allowed Emma to feel comfortable letting go of the hands on responsibilities of care management. Lastly, the resources of a social worker and hospice care were especially helpful during Henry’s decline and death.
By contrast, in the difficult case, Lisa’s support system was inconsistent. She consulted many resources and her family but did not receive the support she thought she needed. Lisa’s sons offered financial assistance, but were not able to respond to her emotional needs and had conflicting views about placement. Lisa made the placement arrangements and decision alone. After placement, Lisa acknowledged that she was having difficulties adjusting to life without her husband and handling issues on her own. At the 3-month post-placement interview, Lisa was dissatisfied with the nursing home staff’s care. She felt in constant conflict with the staff and was unable to relinquish care management responsibilities. Furthermore, staff were unable to redirect David’s troublesome behavioral issues, contributing to a difficult adjustment for both Lisa and David.
Continued Involvement in Care
Each caregiver continued to visit daily and remained an active presence in her husband’s everyday life. They both had expectations that nursing home placement would ease some of the burden of direct caregiving and allow increased opportunity for social visits. Emma was happy that she was able to let go of her caregiving role and spend time with Henry. Henry’s charming and outgoing personality was a relief for Emma and significantly assisted with both her and Henry’s ability to adjust. Emma appreciated the staff’s efforts to bring out Henry’s outgoing personality and interact with him.
In contrast, Lisa thought that her caregiving responsibilities increased post-placement. David’s ill-tempered personality, behavioral issues, and refusal of care likely influenced staff’s ability to attend to his needs. Lisa thought that because David received only occasional socialization opportunities, he retreated inward and became more depressed. Lisa was disappointed with the nursing home and expressed her desire to find a new facility.
Overall, Emma and Lisa have similar stories in that they were both primary family caregivers of their husbands who ultimately made nursing home placement decisions when they were unable to manage the relentless demands of care at home. However, the level of family support and nursing home staff assistance varied greatly, creating smooth or difficult transitions into the nursing home. Because of the support received and the staff’s ability to draw out Henry’s outgoing personality, Emma and Henry were able to develop effective collaboration with the staff and return to a spousal partnership. In contrast, David’s behavioral issues created confrontation and conflict between Lisa and the nursing home staff. Lisa continued to feel overwhelming burden with caregiving responsibilities.
Implications for Practice
The findings show that caregivers have varying experiences throughout their caregiving journeys. The four contextual differences between the two cases illustrate strategies nursing home staff can use to ease the nursing home transition. Knowledge of the caregiver’s relationship with the older adult, the circumstances surrounding placement, support systems, and plans for continued involvement in care are critical to developing staff–family partnerships to achieve mutual goals.
Practical suggestions for smoother transitions have been identified from the current case study report. Before placement, nurses need to encourage caregivers to share their experiences of home care with close family members and their reasons for considering nursing home placement. A plan can be established that is based on the needs of the caregiver–care recipient situation with input from other family members. Positive emotional support and assistance from support systems is especially helpful to alleviate ongoing feelings of guilt and burden (Chang & Schneider, 2010; Paun & Farran, 2006). Upon initial placement, a nurse should be assigned to interview the new resident and his/her family. Caregivers are knowledgeable about the older family member’s functional and cognitive abilities and can suggest strategies for accomplishing care and redirecting difficult behaviors. Caregivers often have preferences and an open dialogue with staff can create a shared environment for collaborative caregiving (Nolan & Dellasega, 1999). Families should also be encouraged to visit during recreational activities to support socialization and build familial relationships outside of direct caregiving activities. Families want to maintain the identity of their older family members and appreciate the nursing home staff’s efforts to bring out their personality (Davies & Nolan, 2006).
Staff building relationships through family-centered programs and interventions has been the focus of recent research (Maas et al., 2001, 2004; Paun & Farran, 2006, 2011). Regular care plan meetings with staff and family can determine whether ongoing needs are met and opportunities to improve outcomes. Successful family-centered programs provided by nursing home staff can decrease some of the negative emotions and stress associated with nursing home placement and lead to collaborations between staff and family that ultimately improve the quality of life for the caregiver and older family member.
Caregivers have long reported mixed feelings about the nursing home transition, including guilt, helplessness, loneliness, and regret (Ryan & Scullion, 2000). Although certain factors influencing these emotions cannot be changed, nursing home staff have opportunities to make a substantial impact on the success of the transition for both the caregiver and older family member. The results of the current study reinforce the need to understand the perspectives of caregivers as their views and preferences can influence nursing home placement adjustment. As placement decisions become increasingly more commonplace, it would be beneficial for nursing home staff to implement family-centered care models to develop positive relationships with families.
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