Interconnections Between My Research and Experience as a Caregiver: Impacts on Empirical and Personal Perspectives

Abstract

Shortly after I received my first R01 grant to study the health effects of caregiving, my sister and I became caregivers to our father. For the next 13 years, we helped him with activities of daily living (ADLs), accompanied him to doctors’ appointments, arranged for home health care, and finally for home hospice. At first, I was able to connect our assistance with ADLs, frustration with coordinating his care, and our psychological stress with my epidemiologic studies. My familiarity with the language of caregiving and long-term care helped us to navigate the medical and home care systems, and to be advocates for my father. However, as my father’s health declined, I felt an increasing disconnect between my research and my experience: communicating with physicians and other care providers, responding to crises and conversations with my sister about placing our father in a nursing home were greater sources of stress than my father’s dementia. These discrepancies made me realize that I could help caregivers more by helping them to negotiate these challenges than through performing quantitative research. So I enrolled in a counseling psychology program. My manuscript will chronicle the ways that caregiving changed me; how my professional work did and did not help me as a caregiver; how the developmental and family theories that I am learning in my psychology classes have expanded my understanding of stressors facing adult child caregivers, and how this entire experience ties into generativity and Third Chapter careers that build on midlife experiences.

I have been conducting research on the health effects of caregiving for over 20 years, and for 13 of those years I was a caregiver to my father. My interest in studying caregiving outcomes was influenced by two factors: my mother’s experience as a caregiver to her mother, and the opportunity to apply epidemiologic methods to this topic. My decision to focus on this area was also based on advice from my mentor and from my father. My mentor steered me toward studying caregiving instead of homelessness (my other interest at the time) with the rationale “there’s an NIH institute on aging, there’s no institute on homelessness.” My father, who had briefly been an English professor, once told me that “good writers write what they know.” As I began my research career, my father’s comment recurred to me: researching caregiving outcomes would be studying what I knew. However, my experience as his caregiver taught me how much I did not know about caregiving. It also identified what was lacking from my studies and many epidemiologic studies of caregiving outcomes, and made me reflect on whether my research was actually benefiting caregivers’ day-to-day lives. In this manuscript, I will describe how my work in gerontology influenced my caregiving experiences, and how these experiences shaped my thoughts about important questions to address in caregiving research, as well as plans for a post-research career. I will also describe these responses in the context of theories of adult psychological development and in relation to pursuing Third Chapter careers based on one’s midlife experiences.

My studies on caregiving outcomes were strongly grounded in epidemiologic principles (Rothman, Greenland, & Lash, 2008) and Pearlin’s caregiving stress process model (Pearlin, Mullan, Semple, & Skaff, 1990). Following the epidemiologic concept that the unexposed group should represent the counterfactual experience of the exposed group, I aimed to compare rates of health decline in caregivers and non-caregivers, drawn from the same source population. To reduce possible bias resulting from letting participants self-identify as caregivers, I used the same task-based criteria to classify participants as either caregivers or non-caregivers. Study participants were classified as caregivers if they currently helped a relative or friend, without pay, with one or more instrumental or basic activities of daily living (I/ADLs) because that person was unable to perform them independently due to cognitive, physical or psychological impairment; participants who did not help anyone with I/ADL tasks were classified as non-caregivers (Fredman, Cauley, Hochberg, Ensrud, & Doros, 2010). Because we knew that caregiver status could change over time, we re-administered these I/ADL questions to all participants at each follow-up interview and updated caregiver status accordingly. I was also concerned that unmeasured stress in non-caregivers could confound associations between caregiving and health outcomes, so we administered a generic perceived stress scale (Cohen, Kamarck, & Mermelstein, 1983) to all participants to include as a covariable in analyses.

The caregiving stress process model (Pearlin et al., 1990) appealed to me because it incorporated both objective and subjective indicators of caregiving stress, acknowledged stresses arising from having competing roles, assessed positive aspects of caregiving such as becoming aware of one’s inner strengths, and applied to a variety of health outcomes. This model could have described my mother’s experience. Becoming my grandmother’s caregiver capped a lifelong complex relationship between them. Despite receiving help from my father and 24-hr home aides, my mother felt there was no end in sight to her caregiving burdens: “your grandmother has outlived one of her home aides, and will probably outlive the rest of us!” she’d often tell me. Her prophesy basically came true: she died of a heart attack in her 60’s, thereby validating the stress process model for me. I had her in mind when I chose measures for our studies. Pearlin’s role captivity scale was included, as were questions about the amount of stress associated with performing each I/ADL task. However, I was concerned that our study participants might feel that they were at fault for the stress they experienced, so I did not include measures of neuroticism, family conflict, or caregiving management. In reviewing these choices in relation to my own caregiving experience, I realized that my studies overlooked many of the relationship aspects of caregiving, which can certainly be upsetting but can also pinpoint the sources of stress, as well as gratification for caregivers (Haley et al., 2009; Roth, Dilworth-Anderson, Huang, Gross, & Gitlin, 2015; Tarlow et al., 2004).

Shortly after my first R01 study on caregiving outcomes was funded, my sister and I unexpectedly became caregivers to our father. He had begun to fall a lot and to show signs of cognitive impairment. He was diagnosed with advanced Lyme Disease. While being treated for Lyme Disease, he slowly lost his ability to use his arms, hands, and legs. After many tests, it was determined that this was due to a hairline fracture in his upper vertebrae that probably had been exacerbated by his repeated falling. My father was then hospitalized to fuse the vertebrae, went to two rehabilitation facilities to regain the use of his hands and legs, and finally moved to an independent living facility near my sister’s apartment. He never returned to his pre-Lyme Disease level of functioning: he always relied on a cane and had some cognitive impairment. Over the next 13 years, my sister and I took care of his finances, shopped for his groceries and helped with other I/ADLs. We accompanied him to doctors’ appointments and advocated for services for him. Over time, he became frail, forgetful, and increasingly isolated and dependent on my sister. We hired a home aide to ensure that he ate, went outside, and had a safety net if anything happened. He began to show more serious signs of dementia: wandering, agitation, and knocking on neighbors’ doors because he had forgotten where he lived. The independent living facility manager strongly encouraged us to put his name on the wait list for the dementia unit in his building. Instead, at the suggestion of my sister’s friend, we got home hospice and 24-hr personal care aides. My father died 3 months later.

How My Caregiving Research Influenced My Experience of Caregiving

My research findings corroborated previous studies that reported significantly greater stress (Lyons, Cauley, & Fredman, 2015) and reduced leisure-time activities (Fredman, Bertrand, Martire, Hochberg, & Harris, 2006) in caregivers than non-caregivers. We also found that subgroups of caregivers with high caregiving demands and metabolic dysregulation experienced more health decline than other participants (Fredman, Doros, Cauley, Hillier, & Hochberg, 2010). However, in contrast to conventional wisdom, my mother’s experience, and my original hypotheses, we consistently found better health outcomes in caregivers than non-caregivers, including lower mortality rates (Fredman, Lyons, Cauley, Hochberg, & Applebaum, 2015) and less decline in physical functioning (Fredman, Doros, Ensrud, Hochberg, & Cauley, 2009). This “Healthy Caregiver” effect had also been observed in a number of other population-based studies (Roth, Fredman, & Haley, 2015). These results were reassuring to me. I felt fairly certain that caregiving wasn’t going to have dire effects on my health, as long as I could deal with the stress.

The authors of articles in this issue have been asked to evaluate whether our professional role was helpful or harmful to our personal experience. Overall, being a caregiving researcher benefitted me, as I will describe in the following paragraphs. My sister’s experience provided a contrast to how caregiving might have affected me if I had not been doing research on it.

My knowledge of gerontology and caregiving research was an asset for interacting with my father’s doctors, navigating the health care system, and advocating for services for him. I could speak the language of rehabilitation and medical care. When care managers told my sister and me that our father’s improvement in ADLs had plateaued, I knew that meant we would need to find other accommodations for him. Having worked in nursing homes, I was less distressed than my sister when we visited nursing homes and assisted living facilities as potential homes for my father. I probably accepted earlier than she that our father would not be able to return to his own home. My professional experience was helpful in these respects.

My knowledge also enabled me to be assertive with his health care providers. About half-way through our caregiving experience, my sister and I became concerned about my dad’s cognitive functioning and asked his physician to evaluate him. As his physician asked him questions from the Mini-Mental State Exam (MMSE; Folstein, Folstein, & McHugh, 1975), it became apparent that my father couldn’t answer the attention and calculation questions. His physician stopped and announced to all of us that my father had a borderline score of 24. “You can’t stop half-way through!” I protested. “If we decide to get home health care, we need to have evidence of impairment in cognitive functioning or ADLs for him to get long-term care insurance reimbursement!” His physician continued with the MMSE, to his and my father’s dismay. This interaction made me realize how difficult it may be for primary care providers to see cognitive and physical decline in their patients who were once intellectually engaged. At other visits, I asked about my father’s weight loss, his loss of interest in activities, and other concerns that I might not have known about had I not studied these topics.

In addition, my research made me aware of the risks of chronic stress, as well as the benefits of respite for caregivers (Zarit, Stephens, Townsend, & Greene, 1998). I was aware that I was short-tempered, on edge, and juggling too many balls in the air. After the first year of my father’s health crises, I was always bracing for another to occur, but was totally surprised each time one did. These intermittent crises felt much more stressful than my preoccupation with my father’s well-being. I also was concerned about my sister’s chronic stress, since she was both his primary caregiver and self-employed. As our father’s needs increased, I found myself doing more for him, but also offering my sister more help with errands and things other than caregiving. My studies asked only about respite and help from others related to caregiving tasks; in future studies, I would ask caregivers if they received help from others with non-caregiving-related activities.

The biggest impact of my research on my own experience was the difference between my response and my sister’s to the suggestion that we move our father to a dementia unit. I was probably more prepared than she to consider a move because of listening to other caregivers’ stories, understanding that my father’s dementia would probably worsen, and having interviewed residents in long-term care facilities. I could envision my father in traumatic situations, such as wandering into traffic, or getting trapped in a stairwell because he couldn’t remember how to get back to his room. He was increasingly showing behaviors from standardized checklists for dementia caregivers (Pearlin et al., 1990; Teri et al., 1992): becoming agitated and upset when he went to the dining room, asking his table mates if they had seen my mother (because, he explained to me, she had agreed to meet him there), and becoming a safety hazard to himself and others. I reluctantly agreed with the facility manager that the dementia unit would be a safer and more tranquil place for him. By contrast, my sister was horrified by its locked entrance, seeing residents at advanced stages of cognitive impairment, and what placing him there symbolized. She wanted to explore other options, and we decided on hospice.

Reassessing My Impact as a Caregiver Researcher

Hospice was the perfect choice for end-of-life care for my father. Our hospice team’s attention to the family, not just the patient, made my sister and me feel that we were no longer alone in caretaking for our father (“I don’t have to do DIY caregiving anymore” said my sister). They helped us to define our values about end-of-life care. They prepared us for cognitive and physical changes in my dad, and for making post-death arrangements. Their philosophy of care and compassion led me to practice mindful self-compassion, which helped me to accept my father’s decline.

During this period, I began to question the impact of my research on caregivers’ lives. Our study participants told us that our questions resonated with their experience; they were glad to contribute to research that would increase our understanding of the impact of caregiving. However, I felt that my research was not directly improving their lives. I understood that cumulatively research has major impacts on caregivers’ lives: it increases our understanding of the caregiver’s experience and the mechanisms by which caregiving affects health, yields evidence-based interventions, and indirectly influences policy and practice.

However, I felt that I could help caregivers more, and feel more personal gratification, by working directly with them. I considered volunteering for hospice, but realized that it was the period before we decided on hospice that was most stressful for me as a caregiver. I thought that leading support groups might be the way I could help caregivers. Several people advised me that that would require training in psychology. Therefore, a year after my father’s death, I registered for a class in developmental psychology, and subsequently enrolled part-time in a master’s program in counseling psychology. Since these courses have greatly influenced my perspective on my caregiving experience, the remainder of my manuscript combines insights I gained from my lived experience, as well as my coursework.

How My Caregiving Experience Differed From What I Expected From My Research

In general, my professional expertise did not prepare me for many aspects of caregiving. It neither benefitted me, nor was it harmful.

For example, like most studies, my research focused on caregiving dyads. My experience differed because I was a member of a caregiving triad. Most of the health care agencies we dealt with were set up for a single caregiver, though. This was enormously frustrating. When I tried to schedule personal care aides for my father, the agency receptionist told me that I wasn’t listed as his caregiver. “I filled out all the agency and HIPAA forms,” I argued. “You’re not in our system; I can’t let you speak to the care coordinator.” Her supervisor confirmed that the agency did have my forms but the receptionists’ computer screen had only one field designated for the caregiver, so only my sister was listed.

Such interactions with health providers and insurance agencies were infinitely more stressful than helping my father with I/ADLs. Because my father’s independent living facility did not have on-site medical care or nearby care, arranging doctor’s appointments became another source of stress as his dementia increased. My sister found a practice that did house calls for their patients. However, to be a patient, you had to be seen at the office, so we didn’t do it because we were concerned it would be too distressing for my father. To my knowledge, most epidemiologic studies of caregivers do not delve into the types of health care that the caregiver coordinates, or the ease or difficulty with arranging this care. Such questions could provide concrete information to guide changes in health care services that are accessed by caregivers.

It was also difficult at times to make decisions with my sister about my father’s care. We came to an impasse about moving him to the dementia unit, particularly because we felt under pressure from the facility manager. Although my research hadn’t focused on interactions between sibling caregivers as a potential source of stress, other studies have found conflict and tension between adult siblings caring for a parent (Kwak, Ingersoll-Dayton, & Kim, 2012; Neufeld & Harrison, 2003; Suitor, Gilligan, Johnson, & Pillemer, 2014). Caregivers report conflicts with siblings surrounding the amount of help provided (Ingersoll-Dayton, Neal, Ha, & Hammer, 2003; Neufeld & Harrison, 2003), frequency of visits, the costs of care and the type of care needed, such as placing the parent in a nursing home (Kwak et al., 2012; Neufeld & Harrison, 2003), as well as perceptions of the parent favoring one sibling over others (Suitor et al., 2014).

My research focused mainly on stresses of caregiving, yet many aspects of my experience were positive. My father and I had conversations about his memories of his older relatives that I doubt we would have had otherwise. Sharing the ups and downs of caregiving with my sister also brought us closer together. It was the first time that we had discussed our values about caregiving (despite having witnessed our mother’s experience), money, and ultimately, end-of-life care. We confided more in each other. We intentionally made sure to spend time together that was not focused on caregiving (a “dad-free zone!” we called it). These experiences increased my understanding of my family, though at the time I was unaware of that.

Another positive aspect was my father’s home aides. Some caregivers describe home aides becoming like family members (Kozol, 2015); one of ours became like family. We marveled at her patience and ability to simply sit with my father. We would not have gotten to know them if my father hadn’t required that level of care. The measures of caregiving benefits that I include in my studies have focused mainly on increased feelings of purpose and self-efficacy as a caregiver (Haley et al., 2009; Pearlin et al., 1990). They include few questions on strengthening relationships with others (Haley et al., 2009). My experience would suggest that future studies explore positive aspects of caregiving in greater depth. Positive perspectives will likely influence whether former caregivers talk with their own children about plans for their care, and would be important to guide education and planning for long-term care services.

Our home hospice experience was also positive. My sister and I were grateful that my father died at home, as he had wanted. Our response was consistent with studies that found more satisfaction with end-of-life care among caregivers whose family members received hospice (Shega, Hougham, Stocking, Cox-Hayley, & Sachs, 2008; Teno et al., 2011). Granted, hospice was a short piece of our caregiving experience, and because it is an end-of-life option, it would be unavailable for most of the time that persons are engaged in caregiving. Yet, longitudinal studies of dementia caregivers seldom include questions about end-of-life planning, unless the care recipient resides in a long-term care facility. My experience would suggest that such questions be included in future longitudinal studies of caregiving outcomes, as discussion of end-of-life preferences has been found to be associated with better bereavement adjustment among caregivers (Wright et al., 2008).

These positive reflections on my caregiving experience have evolved over time. During the year following my father’s death, I was preoccupied with getting his affairs in order. My narrative began to change as my sister and other relatives and I marked anniversaries connected with my father. Distance from being a caregiver allowed me to realize what I had gained, as did talking with friends about their parent caregiving experiences. Researchers who are interested in caregivers’ perceptions of the positive aspects of caregiving and how these impact their post-bereavement functioning might consider following caregivers for several years after the care recipient’s death, and assess these aspects of caregiving at multiple times over this period.

Experience and Effects of Caregiving for a Parent During Midlife

My psychology courses have taught me that being a caregiver during midlife probably influenced my perceptions of my experience, as well as my decision to work more directly with caregivers. Midlife adults typically face psychological development issues surrounding generativity, caring, and relationships with others, particularly family members (Lachman, 2004). Moreover, midlife may be when adults become aware of the finite amount of time left to live, so the pursuit of meaningful work and making a difference in the world becomes important (Lachman, 2004). Persons who are caregivers during midlife are likely at Erikson’s developmental stage of Generativity versus Stagnation and Self-absorption (Erikson, 1950). Erikson proposed that the critical developmental conflict at this stage is nurturing and guiding the next generation to enable them to develop and become independent, versus remaining self-centered and having only an artificial intimacy with others. An interest in taking care of others is the crux of generativity (Peterson, 2002). In fact, middle-aged women who scored higher on “generativity” reported better experiences as caregivers 10 years later, were more likely to provide more emotional support to their care recipient, and had more secondary caregivers available than their less generative peers (Peterson, 2002).

Related to these theories is Lawrence-Lightfoot’s model of the “Third Chapter” of life (Lawrence-Lightfoot, 2009). She defined this period as between ages 50 and 75, a time when adults may make marked transitions from their usual careers because their maturity and life experiences give them an increased sense of liberation and conviction that it is worth it to take the risk. There may be pivotal moments (i.e., public achievements, serious illness, family changes) that motivate people to change, and that influence the types of “creative and purposeful learning” they seek.

A major impact of being a caregiver on my own aging experience reflects Erikson’s theory of generativity and Lawrence-Lightfoot’s model of the “Third Chapter.” I may not have decided to translate my experience into a future career if I had been a caregiver in my 30’s or at a much older age.

Erikson also theorized that unresolved developmental issues from previous stages may re-appear at later stages (Erikson, 1950). The stresses of caregiving may trigger the re-emergence of unresolved family conflicts from previous developmental stages, such as issues of trust and identity. Thus, caregiving to a parent appears to be inherently linked to the midlife stages of psychological development. While psychological studies of caregivers incorporate these theories (Peterson, 2002; Willyard, Miller, Shoemaker, & Addison, 2008), I am not aware that epidemiologic studies do.

A model of caregiving that incorporates stages of adult development might reveal differences in caregivers’ coping, psychological distress, and positive aspects of caregiving across stages of adult development. Midlife adults might be more likely than caregivers at other life stages to perceive their caregiving experience in the context of generativity, resulting in greater resilience, positive accounts of caregiving, decisions to seek greater meaning in life, and increased discussion of end-of-life preferences for themselves. Specifying the caregiver’s relationship to the care recipient would be important since some types of caregiving, such as spousal caregiving, are considered more normative at older ages. Incorporating the caregiver’s gender would be equally important. Multiple studies find that women caregivers are more involved in daily tasks of caregiving, and report more psychological stress than men caregivers; this model could illuminate how caregiving roles and the impact of this experience at different stages of life may differ for men and women. Such a model also could provide insight into whether a caregiver’s relationship with her or his siblings, children, and other relatives strengthens over the course of caregiving. It could guide interventions to improve caregivers’ well-being by gearing interventions to a caregiver’s life stage.

In summary, demographic projections indicate that an increasing number of middle-aged and older adults will become caregivers to an older family member. My experience caregiving to my father was consistent with much of the research on caregiving stress. Yet its positive impact reflected theories of midlife psychological development and generativity. It inspired me to channel what I learned as a caregiver to, as Lawrence-Lightfoot describes, “embrac[e] new challenges and search for greater meaning in life” (Lawrence-Lightfoot, 2009, p. 11). Based on my experience, former midlife caregivers could provide guidance and psychological support to persons in the throes of caregiving, while simultaneously reaping personal benefits of this generative activity, akin to the Baltimore Experience Corps Trial (Gruenewald et al., 2015). This randomized controlled trial found that engaging in a longitudinal intergenerational volunteer activity (i.e., weekly volunteering in an elementary school) significantly increased older adults’ sense of making a difference in people’s lives, in addition to having substantial health benefits. This model could be adapted to enlisting former caregivers to guide the current generation of caregivers. Such programs would improve the lives of current caregivers, which is the fundamental goal of both research and direct care in this field.

Funding

This work was supported by the National Institutes of Health (grant numbers R01 AG18037, 1R01AG028144-01A1, and 1R21AG050428-01).