J Adult Dev (2013) 20:46–56 DOI 10.1007/s10804-013-9155-9
Views on Aging: How Caring for an Aging Parent Influences Adult Daughters’ Perspectives on Later Life Natalie D. Pope
Published online: 9 February 2013 Springer Science+Business Media New York 2013
Abstract Approximately 24 million Americans provide informal (unpaid) care to a family member or friend who is disabled or ill. The most common informal caregiving relationship is that of an adult child providing assistance to an elderly parent. Women in midlife represent most of the unpaid caregivers for older adults, yet little is known about how providing care affects women’s beliefs about and desires for their own aging. The purpose of this study was to understand how being a caregiver affected adult daughters’ perspectives on their own late life. In-depth interviews were conducted with a diverse sample of 15 women between the ages of 50 and 65 who were providing care to an ill and disabled parent or parent-in-law. Analysis of the qualitative data revealed that caregivers were affected by the caregiving experience in five ways: gaining awareness, provoking fears, providing a comparison for current functioning, providing firsthand knowledge about aging, and providing an example of how to age. This study offers an alternative perspective on the well-documented negative consequences of caring for an older person, suggesting that caregiving encourages personal growth for adult daughters in midlife. Keywords Caregiving Older adults Late midlife Perspectives Aging Introduction The majority of care for frail, older adults comes from family members (National Alliance for Caregiving and N. D. Pope (&) Social Work Program, Ohio University, 576 Morton Hall, Athens, OH 45701, USA e-mail:
[email protected]
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AARP 2009; Quadagno 2008). Approximately 24 million individuals in the United States are in family caregiving roles for persons over the age of 50. Caregivers are predominantly female (66 %) and are in midlife, 48 years old on average (NAC and AARP 2009). Although women in midlife represent the majority of caregivers for older adults, little is known about how caregiving affects their sense of self and aging. Therefore, the purpose of this study was to explore how caregiving influences adult daughters’ perspectives on growing old. Review of the Literature Several authors have observed a relationship between aging parents and adult children’s conceptions of their aging self. Based on his interviews of professionals between the ages of 50 and 60, Karp (2000) notes that ‘‘respondents see their own aging reflected in the aging of their parents, children, and grandchildren’’ (p. 72). The interconnectedness of lives is reflected in how one participant speaks of her mother, ‘‘She’s slowing down in every which way…And I think when these things happen you’re finding out that you’re vulnerable’’ (Karp 2000, p. 72). Similarly, Marston (2001) speaks of women seeing frailty in their aging parents and realizing their parents can no longer protect them. She states, ‘‘In every ache and pain, in our changing energy level, in our changing roles with our parents and children, we catch a glimpse of our own mortality’’ (p. 123). Adult children providing care to disabled parents assume the role of protector and caretaker; this role reversal can create a sense of vulnerability in the grown children (Marston 2001). Providing care to aging family members is an increasingly common midlife task for women. Views of midlife development that involve a cognitive component, giving
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attention to how individuals appraise and learn from personal experiences, are pertinent to how providing care for an aging parent shapes adult daughters’ perceptions of themselves. The identity process model offers a framework that explains how personal identity develops from the transaction between individuals and their intra- and interpersonal experiences (Whitbourne 1987). The processes of assimilation and accommodation describe how people interpret and respond to life experiences, and the use of these two strategies has implications for an individual’s sense of self (Whitbourne 1987; Whitbourne and Connolly 1999). Assimilation occurs when individuals attempt to fit new experiences into their existing self-concept. Assimilative individuals may deny age-related changes such as physical or cognitive declines and are able to maintain a sense of self-consistency (Lachman and Bertrand 2001; Whitbourne and Skultety 2006). Denial and rationalization might be protective in the short term, by helping individuals ‘‘avoid recognizing weakness or inadequacies in the self’’ (Whitbourne and Connolly 1999, p. 31). Persistent refusal to incorporate age-related information can be harmful, however, when individuals do not modify themselves and respond to physical, cognitive, and social changes that come with age. In contrast, accommodation is when ‘‘individuals change their identity to conform to new experiences’’ (Lachman and Bertrand 2001, p. 300). Persons with a strong accommodation style have a weak and incoherent identity and often overreact to age-related changes. This person may assume the identity of an old person at the first sign of gray hair (Lachman and Bertrand 2001; Whitbourne and Connolly 1999), an attribute stereotypically associated with old age. This can have a negative impact on self-esteem (Rodin and Langer 1980). Theoretically, optimal adjustment to aging would come from a balanced identity style through which adult children gradually integrate age-related information into a cohesive sense of self. There is no ‘‘right’’ way to adapt psychologically to growing older; assimilation, accommodation, and balanced identity styles have advantages and disadvantages with regard to the aging process (Whitbourne 1987). A balanced identity style, however, involves being stable in personal goals and values yet flexible enough to adapt to changing circumstances in midlife (Whitbourne and Connolly 1999). Moreover, balanced individuals would take advantage of medical, social, or psychological interventions to plan for their own late life. This study rests on the assumption that, for adult daughters in late midlife, caring for an aging parent is an experience that influences the perception of their aging self. Significant experiences that affect adult identity development include long-term relationships, parenting, work-related experiences, and community activities (Whitbourne and Connolly 1999). Similarly, caregiving may be a salient experience in
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midlife that influences identity by stimulating both assimilation and accommodation. As Karp (2000) and Marston (2001) point out, caregivers see themselves in their aging parent and in the changing parent–child relationship. There is often a reversal of roles where adult children now have to protect and assist their parents. Caregivers can respond to these experiences in several ways. Caring for an older adult provides adult children with firsthand knowledge about the financial, environmental, and social factors that impede or assist in caregiving. While assimilative individuals will not see this information as relevant to them, accommodative persons might become overly obsessed with their own late life plans. An accommodative woman caring for a blood relative may be concerned with genetic or lifestyle similarities that could make her susceptible to the same physical or cognitive impairment. Such awareness could lead to extreme anxiety or proactive behaviors concerning later life.
Methodology This study employed a qualitative design because the focus was to describe, understand, and explore how caregiving influences adult daughters’ perspectives for their own later life. Qualitative research is appropriate when ‘‘a complex, detailed understanding of the issue’’ (Creswell 2007, p. 40, emphasis in original) is needed. Although caregiving is becoming a normative event for many women in midlife, the actual experience is unique and variable to every adult daughter and every caregiving dyad. Likewise, how caregiving affects a person’s perspective on aging is multifaceted and best explored qualitatively. Sample Selection and Recruitment This study employed a nonrandom, purposeful sample of adult daughters who were providing care to a parent or parent-in-law. Purposeful sampling was used in order ‘‘to yield the most information’’ and select participants whose experiences are ‘‘information-rich’’ as related to the study purpose (Merriam 2002, p. 20). Participants selected for this study (a) were women, (b) were identified as the primary caregiver to a parent or parent-in-law with a chronic illness and disability, (c) had been a caregiver for at least 6 months, (d) were provided at least 7 h of direct care per week, (e) were between the ages of 50 and 65, (f) were willing and able to participate in a 60–90-min inperson interview and a follow-up interview (or telephone call) if clarification was needed after reviewing the transcript, and g) lived in Georgia (where the research was conducted). Guest et al. (2006) examined the issue of sample size in qualitative research empirically and found that data saturation occurred by the time they had analyzed
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twelve interviews. Similarly, at 13 interviews data saturation began to occur, but two additional interviews were conducted to ensure that important perspectives were uncovered. Three approaches were used to find participants for this study: gatekeepers, recruitment fliers, and snowball sampling. First, professionals at a local agency serving older adults aided in locating women who met the participation criteria. Caregivers who had been interviewed in a previous qualitative study also served as gatekeepers and assisted in recruiting and referring other participants. Second, fliers were used to recruit participants through distribution at locations such as Area Agencies on Aging, hospitals, churches, and community centers. Fliers were also sent to Internet listservs including a local Learning in Retirement group. Lastly, snowball sampling was used by asking study participants whether they knew of other caregivers who might be interested in participating. The use of gatekeepers (professionals and participants from a previous study) and snowball sampling helped to establish rapport and trust with the interviewees. The final sample consisted of a diverse group of 15 female caregivers, ranging in age from 50 to 64 (see Table 1). Eleven members of the sample were White, three were African American, and one was Hispanic. Eight women were married, four were divorced, two had never been married, and one was widowed. A subjective measure of participants’ income level was used; six caregivers reported to ‘‘have just enough’’ money, six ‘‘always had money left over,’’ two ‘‘had enough with a little left over,’’ and one caregiver ‘‘could not make ends meet.’’ Six participants worked full-time, six did not work (due to either unemployment or retirement), and three were employed part-time. Care recipient diagnoses included Alzheimer’s disease and dementia, Parkinson’s disease, heart problems, and eyesight problems. Two parents were on hospice at the time of the interview, and two parents passed away soon after their daughters were interviewed, although not the same two who were previously receiving hospice services. Data Collection This study employed semi-structured interviews, using an interview guide with both structured and less structured questions. The research was conducted following approval from the University of Georgia Institutional Review Board. Prior to each interview, participants signed a consent form for participation which included the purpose of the study, researcher contact information, audience for which the study is intended, and explanations of the voluntary nature of participation. The form also explained that the interview would be taped and transcribed and that pseudonyms would be used to maintain confidentiality. Each participant was
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given a copy of the consent form to keep. Interviews were conducted during a six-month time period. Interviews ranged in length from 28 min to 2 h and 10 min although most interviews averaged one and a half hours in length. Data Analysis Findings in qualitative designs are typically a combination of description and analysis (Merriam 1998). Methods were adapted from grounded theory to analyze the data in this study, particularly the techniques of coding, constant comparison, and memo-writing. Analysis occurred concurrent with collecting the data, which is recommended by several authors (Bogdan and Biklen 2007; Ezzy 2002). During initial reading of the transcripts, open coding procedures were employed, where codes were created from what is present in the data. This ‘‘initial identification of topics’’ (Ezzy 2002, p. 87) is inductive and exploratory as the author approached the data without themes and categories already in mind. After identifying initial codes, focused coding was used, which involved making decisions about what codes were most relevant to the research questions, discarding codes that were not relevant, and combining earlier codes that were similar. The grounded theory method of constant comparison was used to look for similarities and differences in categories across the transcripts (Charmaz 2006). To move beyond simply identifying codes, memo-writing was used (Charmaz 2006) to help conceptualize and flush out thoughts after reading the transcripts and interpreting the data.
Results Providing care to an aging parent brought about many reactions from participants regarding their own later life. Analysis revealed that parents’ experiences with illness and disability affected participants’ views of their own aging in five ways: gaining awareness, provoking fears, providing a comparison for current functioning, providing firsthand knowledge about aging, and providing an example of how to age. Gaining Awareness Prior to assuming care for a parent, most caregivers did not think about growing older. Kathleen, an articulate and attractive 55-year-old, said, ‘‘I never thought of these things. I never considered them. I just went about my business.’’ Likewise, Jody, a 64-year-old White woman who cared for both her father and her mother-in-law, commented, ‘‘I didn’t really think about it. I didn’t think about it until they got sick. It hit home.’’
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Table 1 Participant Characteristics Participant
Age
Race
Health status of participant
Care recipient
Age of care recipient
Length of time caregiving (years)
Illness/disability of care recipient
Living situation of care recipient
Kathleen
55
White
Asthma
Mother
85
2
Alzheimer’s disease
Lives with Kathleen
Barbara
60
White
None
Mother
93
11
Dementia
Nursing home
Mary
64
White
High blood pressure, high cholesterol
Mother
91
8
Macular degeneration, arthritis, heart problems
Independent living facility
Eva
63
Hispanic
Arthritis, high cholesterol
Mother
96
1
Arthritis, back problems, poor eyesight
Lives with Eva
Janice
60
White
Back problems
Mother
79
1 year
Frailty, complications from chemotherapy
Lives with Janice
Father
80
1 year
Heart problems
Lives with Janice
Maggie
50
White
Heart condition
Mother
80
6
On feeding tube
Nursing Home
Jody
64
White
High blood pressure, thyroid problems
Father
86
8
Dementia, physical disability due to a stroke
Nursing Home
Motherin-law
90
8
Alzheimer’s disease
Nursing Home
Karen
64
White
Diabetes, fibromyalgia
Mother
86
2
Parkinson’s disease, diabetes, high blood pressure
Lives with Karen
Sandra
58
White
Diabetes, high cholesterol, bone spurs
Mother
86
7
Macular degeneration, arthritis, failure to thrive
Lives with Sandra
Jacqueline
54
African American
None
Mother
80
8
Alzheimer’s disease
Lives with Jacqueline’s sister
Joanie
58
White
Arthritis
Mother
82
3
Dementia, complications from broken hip
Lives with Joanie
Father
88
3
Short-term memory loss, heart problems, fractured hip
Lives with Joanie
Evelyn
58
African American
Fibromyalgia, muscle pain from stroke
Mother
77
8
Diabetes, high blood pressure, heart problems, kidney failure
Lives independently
Melanie
50
White
Mother
90
3
Beverly
58
African American
Muscle strains, back problems No health problems
Mother
88
7
Arthritis, short-term memory loss Hypertension, glaucoma
Independent living facility Lives with Beverly
Kay
52
White
Mother
77
7
Hypertension, imbalance, tachy brady syndrome
Lives with Kay
No health problems
As a result of caring for a parent, participants became aware of various aspects of aging. Beverly, a professionally dressed single woman, said, ‘‘It’s like that you start looking at your own mortality, well not your own mortality, but your disability.’’ Joanie, a 58-year-old middle school paraprofessional, became aware of her own lack of planning for later life. When asked what she had learned about herself through caregiving for her parents, Joanie tearfully replied, ‘‘I don’t want to even think about that one. What I
learned is… that I don’t know what kind of arrangements to make for me.’’ She went on to say, ‘‘I realized that I don’t know what will happen to me if I live to be 82 and I’m in that shape.’’ Barbara, who traveled regularly from Georgia to Tennessee to care for her mother, believed that caregiving made her more realistic about aging, especially compared with women who had never cared for an older person. She expressed it this way:
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I think [women who have been caregivers] are a little more realistic that this is the process of life. Like my friend Joanne, her mother’s been dead a number of years, and she was the one who said she was uncomfortable helping her [mother take a bath]. I think she just kind of doesn’t see it as an issue….She never wants to talk about it as one day, it’ll be our issue. In speaking about her sister, Janice, a married 60-year-old who had both parents living in her home, echoed a similar attitude, I think a lot of people who haven’t been presented with the challenges probably don’t know that it will ever be a problem. If [my sister’s husband] was gone and all of a sudden she had to have a hip replacement or fell and got hurt, or got sick, or any of that stuff, I don’t think it’s ever even occurred to her what would happen to her. Provoking Fears Caregiving influenced daughters’ perspectives on aging by provoking fears about various aspects of aging such as illness, disability, and extreme old age. Participants expressed similar sentiments regarding late life. Kay, who moved from California to Georgia to help care for her father with pancreatic cancer, commented, ‘‘I don’t think it’s very fun to get old.’’ Jody said it this way, ‘‘It can be ugly. [It’s] not pretty after 80.’’ After many years of caregiving, Joanie now knows, ‘‘[aging] is more difficult that I thought.’’ Some caregivers feared getting the same illness their parent was experiencing. In taking care of her mother, Kathleen was particularly irritated by her mother’s incontinence which meant extra laundry and cleanup, as well as making her feel her home was ‘‘unfit for guests.’’ Moreover, she worried about having these problems herself as an older woman: ‘‘The incontinence issues…that is a frequent problem for millions of women…. It’s scary! I never want to be there, but sometimes it’s all I can do to make it to the bathroom.’’ Similarly Karen, a 64-year-old Canadian transplant who cared for her mother with Parkinson’s disease, said, ‘‘I just pray I don’t get Parkinson’s. That’s a debilitating disease. It’s scary.’’ Jody’s mother had died from pulmonary fibrosis, and the genetic component of this illness triggered fears that she too would develop the disease, ‘‘I hope I’m not in line for pulmonary fibrosis, but in our family there’s a lot of it.’’ Caring for a parent also prompted caregivers to be concerned about their own disability and care needs in later
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life. Mary, a small-framed and soft-spoken 64-year-old, worried about who would care for her in old age, ‘‘Just by taking care of them you think, ‘Oh my goodness, 1 day I’m going to be here’. And my daughter is going to have to, or somebody’s going to have to take care of me.’’ Karen also commented about being impaired in later life, ‘‘I’ve… never cared about what age I am. [It’s] no big deal to tell somebody how old I am. That doesn’t bother me—being incapacitated does.’’ Evelyn, a ‘‘mother hen’’ who helped raise her younger siblings, went even further to discuss how dependency would damage her sense of self; ‘‘It won’t be me, because, although I have health problems, I’m a vibrant person. And when I stop being vibrant and stop thinking the way I think now, I won’t be me.’’ Increased life expectancy was another concern for participants. Many of the caregivers dreaded the prospect of extreme old age. Mary stated simply, ‘‘I just don’t want to get too old.’’ About longevity, Barbara said, ‘‘I’m not thrilled about that aspect of life. I watch that in the nursing home all the time. Let’s improve this or that so you can live to be ancient? Well, ancient is not pretty.’’ Kay said simply, ‘‘I don’t want to live longer. I would like to live more independently and more healthy, in better health. And die ((pause)) young.’’ Related to fears of living to extreme old age, diminished quality of life as an older person brought about anxiety for many of the women. Sandra, a 58-year-old caregiver who presented a frank view of aging, said, ‘‘My dad suffered for so long.’’ She went on to discuss older people sometimes losing the ability to see, hear, smell, taste, and move around. Similarly, Mary talked about challenges that her mother was facing: You can’t do as much as you would like to….Not being able to see. [Mother] likes to read and she can’t do that anymore. It’s very hard….She can see T.V. but she has to sit right close — as close as you can get to it to see. And I don’t know how much longer that’s going to work for her. Additionally, caregivers became fearful of a diminished social network in later life. Eva aged 63 years old cared for her mother, who made yearly trips back to Argentina to see family. Eva was motivated to start an ‘‘Abuelitas’’ group for other older Latinas after seeing her mother’s desire to be around people. She said: I can see that I’m going to live for a long time, but that has also provoked some fear, especially that I know that I have the longevity and my husband doesn’t. And my sons don’t live here. So, it provokes some insecurity, there. I also see [my mother’s] need for people, and my family doesn’t live here, so that’s fearful.
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Providing a Comparison The experience of caregiving served an evaluative function whereby participants compared themselves to their parents to assess their current functioning and estimate how they might age. As their parents faced illness and disability, daughters saw themselves reflected in their parents’ experiences. Sandra put it this way: You look at your parents and … you go, ‘‘Oh, if you get better, or whatever, then this horrible thing isn’t necessarily in my future.’’ Because you see that what your future is going to be is somehow going to mirror what you’re seeing in them. There’s some of that where, ‘‘You’ve got to get better. You’re not going to die, because I don’t want to.’’ Karen, who cared for her mother with Parkinson’s disease, compared her current functioning to that of her mother at age 64, ‘‘It scares me to death to think that she wasn’t like this at all. At 64, she was still playing golf. And what am I going to be like at her age?’’ Eva, a former ballerina committed to diet and exercise, said she still felt ‘‘extremely young’’ at age 63 with her mother being 96 and her grandmother living to be 103. Looking ahead she reflected, ‘‘If I age as good as my mother, I realize it’s going to be a nice, long life.’’ Providing Firsthand Knowledge Additionally, caring for a parent provided firsthand knowledge about aging, particularly what is involved in assisting an older person with illness and disability. Daughters described what they had learned about physical and cognitive aspects of aging as well as the medical care and expenses involved in caring for an older person. Barbara learned about the practical aspects of aging through caring for her 93-year-old mother as well as her neighbor, who died at age 94. This knowledge helped her as she planned for her own aging. I think what has really helped me to plan is when I’ve taken care of these people. We’ve actually gone… through all the stages. Now I think it would be harder for me to see the entire picture had Mother just had a massive stroke and that’s where we were [and] we didn’t gradually move into any of this stuff. Adult daughters in this sample discussed mistakes they had made while caregiving. Yet, these mistakes provided indispensable knowledge. Joanie told how she learned that obtaining power of attorney was necessary to manage her parents’ finances: Power of attorney happened last summer…. [Health care professionals] would say, ‘‘Do you have power
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of attorney?’’ Well, I was ignorant, totally. And I said, ‘‘Yeah! I do.’’ Because I always signed everything. And nobody had ever asked me….Mother had [just] given me permission verbally. I just thought, ‘‘Well, yeah, I do. I have it.’’ But then when we got home and we started trying to move some of their money around into another bank, I realized, ‘‘Um, I don’t have it.’’ So I got it. Maggie, one of the youngest participants at 50 years old, hired an elder-care coordinator to help in making arrangements for her mother. Of all the women interviewed, Maggie appeared the most knowledgeable about the financial and medical aspects of caring for an older person. Most of what she learned, however, was experiential. She stated, ‘‘I’ve learned all this by default from going through the process.’’ In hindsight, Maggie would have done several things differently with regard to her parents’ care, such as selling her parents’ home sooner or putting the home in her name in order for her mother to qualify for Medicaid. Participants also became more familiar with the physical and cognitive aspects of aging. Barbara said definitively, At some point, either your mind goes and your body may be intact or your body goes and your mind is intact, [it’s] one or the other. Something goes — either your body or your mind. And, if you live long enough, like my mother, then they both pretty well go Jody, the 64-year-old who enjoys spending time on the golf course, made a comparable comment as she spoke of what she has observed in her mother-in-law. The longer you live, like my mother-in-law, your body might continue …. There is nothing physically…Chemically, there’s nothing the matter with her. It’s her brain that’s going. I don’t know which is worse, to not know where you are and still be going or, like my mother, her brain was fine. Two days before she died, we were having logical conversations …. She was fine, but her body just wouldn’t go. So, one way or the other, it’s going to happen. Providing an Example for Daughters A final way that caring for aging parents affected adult daughters’ perspectives for late life was by offering an example either of what to do in late life or what not to do. When women reflected on how they wanted to be in old age, they often discussed whether or not they would approach aging as their parents did. If daughters perceived their parents to be having positive experiences with aging and long-term care, they identified what parents might be
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doing to bring this about, and daughters desired to emulate these behaviors as they aged. Conversely, when daughters observed their parent to be having difficulty in later life because of things parents did or did not do, daughters expressed a desire to approach their later life differently. Positive Examples of Aging When caregivers mentioned parents’ behaviors that they admired and wanted to imitate, it was primarily in the areas of finances, living arrangements, and lifestyle (e.g., diet, exercise, social network). Maggie, a 50-year-old with a pronounced southern accent, described her father as having ‘‘insight’’ as she discussed his tremendous organization in preparing personal documents, putting Maggie’s name on financial accounts, and giving her access to the safety deposit box. Maggie’s father prepared her for the caregiving role, telling her, ‘‘Before you die, this will be the hardest thing you’ve ever done.’’ Karen, a 64-year-old from Canada, had already taken financial steps toward her own aging based on her mother’s positive example. She said, I did go get some life insurance. [It’s a] first step. Second step is I’m going to look into pre-needs [insurance]. [Mom] has got all this, and it makes me realize how I need to do this for my children. Similarly, Kay observed, ‘‘My mom has long term care insurance….I think… I would like to have that.’’ Along with finances, parents’ approaches to housing and living arrangements influenced what adult daughters wanted for their own later lives. Barbara expressed satisfaction with the care her mother received in a small-town nursing facility. Long before she needed an intense level of care, Barbara’s mother had intentions to relocate to this facility: My mother always said… ‘‘Well, if my house burns down I’ll just go to the nursing home.’’ ((Laughs)) …. She was on this nursing home wait list for years because her sister didn’t want to be on it unless she was on it too…. So every few months they’d call her and mother would say, ‘‘Oh, I can’t come now. I’m in too good of shape.’’ But, she knew where she was going. Based on her mother’s positive experience in this particular facility, Barbara desired to also be placed in this nursing home if she lost the ability to care for herself. Parents also served as a positive example with regard to lifestyle behaviors, such as diet, exercise, and friendship networks. Eva admired her mother’s attitude and level of activity. [She] doesn’t focus on pain. Doesn’t like to complain and doesn’t like to hear complaining. She likes to feel
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useful. She says her mother taught her not to ever sit down and be idle. So, Mother is sitting down and she’s knitting. She’s crocheting. She cannot see that well, so she makes holes and she takes it all apart. And she’s always busy. She’s always doing something. Eva had already begun imitating these behaviors she respected so much in her mother. She said, ‘‘I am that way. I am very, very productive’’ and ‘‘I exercise. I’m as proactive as my mother is.’’ Negative Examples of Aging Not all participants wanted to emulate their parents’ approach to later life. Sandra was frustrated by her parents’ lack of planning. I tried to get them to make some plans, because I could see them deteriorating and I wanted them to address these issues…. I tried getting them to talk about what their last wishes were. They were like, ‘‘I ain’t going to worry about it. I’m just going to die, and then I won’t need to worry about it, because I’ll be dead and it’ll be your problem.’’ They really wouldn’t address the issue. And I really think that they both just kind of thought that, ‘‘Well, I’ll just die. I’ll just tra-la-la–la along, and then I’ll die.’’ And unfortunately that is not at all what happened. They became incapacitated. Melanie, a single woman who worked as a musician and music teacher, also spoke of her mother’s shortsighted view of her own aging: [My mother] didn’t budget or anything and when she set up her annuity way back however many years ago, the person who was guiding her through that process asked her, ‘‘Do you want the life option which would give you $150 less a month or a little bit more per month up to a certain age?’’ She figured, ‘‘Who’s going to live past 85?’’ So she took the other option which is the big… with one little flick of a pen…. There’s not forward thinking. She deals with exactly what is in front of her at that moment. Some parents set negative examples in the area of housing and living arrangements. Joanie, the 58-year-old paraprofessional, felt burdened as the only child caring for her mother with dementia and father with physical disabilities. Her mother had made no plans for housing in later life, but only told Joanie to never place her in a facility. I’d never want to say to my daughter, ‘‘I’m never going to a home. Don’t ever put me in a home’’ ….At this point Mother doesn’t realize what she’s done to me…. We’ve had to put our life on hold.
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Lastly, some participants were shaped by their parents’ negative behaviors in the areas of diet, exercise, and friendship networks. Kay, who moved during her 40s back to Georgia from California, commented about her mother’s lack of friendships. My mom and dad growing up, they had a lot of friends, very social, very active. And as they got older… they sort of just kept to themselves….They didn’t do a lot of things socially….My father became my mother’s whole life….There’s a really good side to that. They loved each other deeply and I think it was a very good role model for me and what a marriage should be like. The flip side of that is — I love Tom, adore him, but I don’t want my whole life to be him. Because something could happen to him before something happens to me, and I’ve got to have other things in my life, besides my children and my husband. For Kay, nurturing her female friendships was important in supporting not only her current well-being, but also related to life satisfaction in the coming years. Jody spoke of her commitment to exercise that came about partially through witnessing her own father’s lack of mobility: I want to walk when I’m 80. I just want to be upright and mobile. I want to be as strong as I can be. I guess that’s been a conscious decision. Where my parents didn’t do that. Daddy wouldn’t exercise, didn’t even want to walk the dog. That, I think, contributes to some of his decline after his stroke. He was so unfit and then wouldn’t do the therapy She and her husband golf on a regular basis and lift weights at a gym in order to maintain a healthy physical body.
Discussion This study sought to determine how being a caregiver affected adult daughters’ perspectives about their own late life. Analysis of in-depth interviews with 15 female caregivers in late midlife revealed that adult daughters were affected by the caregiving experience in five ways: gaining awareness, provoking fears, providing a comparison for current functioning, providing firsthand knowledge about aging, and providing an example of how to age. Participants in this study used phrases like ‘‘just going along’’ and ‘‘rolling along’’ to describe their life before becoming aware of their own aging and potential care needs in later life. Before this increased awareness, participants were focused on things such as work and children. Many of the women had not given much thought to aging
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prior to being a caregiver. Kathleen said, ‘‘I never thought of these things. I never considered them. I just went about my business.’’ The caregiving experience was a significant event that brought about a revised understanding of themselves and their relation to the surrounding world (Ogle and Damhorst 2005). This finding differs from the view that individuals in America tend to be assimilative in nature (Whitbourne 1987), just as individualism and independence are thought to be American traits. San Antonio and Rubinstein (2004) suggest, ‘‘the American self is often described as individualistic, inviolate, and unchanging’’ (p. 39, emphasis added). As well, Troll (1995) believes that as Americans age, they do not believe that they are different; they have a ‘‘perceived continuity of self’’ (p. 77). A second conclusion is that caregiving provoked agingrelated fears in many participants. This finding complements other qualitative studies that explore the salience of personal experiences with ill family members for perceptions of vulnerability to that disease (Erblich et al. 2000; Walters et al. 2004). For example, women with a family history of breast cancer whose mothers died of breast cancer had significantly higher breast cancer-related distress than either women with a family history of breast cancer whose mothers had not died of breast cancer or women with no family history (Erblich et al. 2000). Lindenmeyer et al. (2010) also found that midlife women who had a personal experience with an ill relative integrated this new information into their sense of self, a process similar to identity accommodation (Whitbourne 1987). When a woman expressed fear of becoming like the relative, it ‘‘almost always entailed some kind of loss of self, either through a perceived loss of mobility or changed appearance (arthritis, osteoporosis) or loss of memory (stroke, dementia)’’ (Lindenmeyer et al. 2010, p. 289). When asked what they fear most, 26 % of older adults reported loss of independence, 13 % ranked placement in a nursing home highest, while only 3 % ranked death highest (Clarity 2007). Similarly, participants in this study were not concerned about death, but were afraid of prolonged life at the expense of independence and quality of life. Eva, a participant in this study, feared loneliness as an older person, ‘‘I have absolutely no fear about death. Where I do have fear, it’s to be left alone. To be 90-something years old and be alone, that I would not like.’’ Indeed, older adults who outlive family members and friends and live alone are more likely to experience loneliness and isolation (British Columbia Ministry of Health 2004; Cornwell and Waite 2009). Sandra’s fears centered on diminished quality of life in extreme old age, ‘‘Basically what I’d like to do [is] fall dead out in the yard or something. None of this lingering in a nursing home, where every day in the same. I’m not the type—I wouldn’t do well in that setting.’’
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Sandra’s concern is a reality for the increasing number of elders living with a chronic, life-threatening disease that requires ongoing care (U.S. Department of Health and Human Services [USDHHS] 2009). Moreover, as individuals live longer, risk for chronic illness and disability increases (USDHHS 2008; Richardson and Barusch 2006). A third way participants were affected by caregiving is that parents offered a point of comparison for women with regard to their current functioning as well as their future aging. In their research on how family health narratives influence midlife women’s perceived vulnerability to illness, Lindenmeyer et al. (2010) found that women oftentimes compare themselves to other relatives. Participants ‘‘visualized their possible future selves by looking for signs of turning into (or ‘becoming like’) their [aging] relatives’’ (Lindenmeyer et al. 2010, p. 283). The way participants situate themselves in relation to their parent illustrates the notion that women define themselves by their connection to others—a central concept of the self-inrelation theory (Jordan 1995; Miller 1996). Janice, a participant in this study, had learned through the caregiving experience, ‘‘When you’re growing up you always see yourself as a totally different individual,’’ but she now sees, ‘‘I’m more like my mother than I ever thought I was.’’ Despite her mother’s many ailments, she continues to find joy in family relationships. Janice observed she was like her mother in this way, ‘‘I’m no different than my mom. I get out here on this deck and watch this baby run and play out here, and life is good.’’ While relationships and social connections influence identity development among both genders (Karp 2000), findings of this study support other research (Barrett 2005; Jordan 1995; Miller 1996) that significant others are particularly salient for women’s identity development. Caring for an ill and disabled parent presented participants with experiential knowledge about the medical and financial aspects of elder care. Jody talked about people whose parents died at a young age, ‘‘They don’t have a clue about what it’s like to care for aging parents.’’ Robinson and Moen (2000) make a similar observation when they suggest that caregiving experiences may increase midlife women’s firsthand knowledge of ‘‘the frailties that often accompany aging, reinforcing desires to take control over their own future and [long-term care] arrangements to optimize both care and independence’’ (p. 525). Roberto et al. (2001) report that more women than men had formal plans for their future care and surmised this was because women ‘‘know the realities of family caregiving firsthand’’ (p. 119). This personal knowledge of caring for an older person might cause women to be more pragmatic and proactive in anticipating their own future care needs (Roberto et al. 2001). A final way that caregiving affected adult daughters’ perspectives and plans for later life is that parents provided
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an example of how to age. Many parents modeled planning behaviors for their children, especially in the areas of finances. Karen’s mother had life insurance and preneeds insurance; Kay’s mother had purchased long-term care insurance. In the area of housing, Barbara’s mother had plans to relocate to a long-term care facility in her town, whereas Sandra’s parents refused to make plans for their care. Evelyn’s mother modeled an apathetic attitude through having others do for her things she could physically do herself. Conversely, Eva described her mother as ‘‘extremely happy being active’’ and said she herself was ‘‘as proactive as [her] mother.’’ The positive example set by some parents can be viewed as vicarious experiences that might support participants’ confidence in modeling similar behavior (Bandura 1997). Some caregivers with a more accommodative identity style (Whitbourne 1987) incorporated these experiences and changed their behaviors based on what they observed from their parents. Maggie’s father was proactive in his approach to aging and care needs. He organized his personal finances and the necessary paperwork Maggie would need to assist him and his wife if their health deteriorated. Maggie, like her father, was extremely systematic in her planning behaviors. She had communicated her desires verbally to her son, had her plans in writing, and made arrangements with an attorney. Not all participants were motivated to make concrete plans for later life as a result of seeing their parents’ positive example. Although Kay had observed her mother’s forethought in purchasing long-term care insurance, Kay had made no effort to purchase it for herself or her husband. This assimilative style (Whitbourne 1987) is also seen in Joanie, who felt burdened by her parents’ lack of planning, thought it best to ‘‘make arrangements’’ for one’s own aging. Yet, she admitted, ‘‘And here I am, I’ve made no arrangements. I haven’t really put a lot of thought into it.’’ When asked why she had not made plans, Joanie surmised, ‘‘Because I don’t think I’m old.’’
Conclusion Qualitative inquiry aims to provide in-depth descriptions of a phenomenon, using a small sample of information-rich cases. Consequently, the findings of this study should be cautiously applied to other groups. The ways that caregiving influenced participants’ perspectives about later life will not necessarily hold true for all female caregivers in this agegroup. In addition, study participants were limited to adult daughters who self-identified as caregivers. It is possible that potential participants did not respond to the recruitment flier because they did not identify with the selection criteria or language used in eligibility requirements.
Views on Aging
Another limitation comes from participants’ ability to be reflective and to articulate how caregiving had influenced their views on aging. Some participants provided fewer details about their thoughts and feelings, even with probing. Caring for an aging parent is stressful, time-intensive, and emotionally taxing. Some participants may have been too preoccupied with caregiving to reflect on how the experience had affected their view of self and of aging. Other participants may not be reflective by nature. Certain women may not have felt comfortable discussing personal issues with the researcher, possibly because of differences in age or because the researcher was not a caregiver herself. Despite limitations, this study presents a unique perspective on the caregiving experience. This study offers an alternative perspective on the well-documented negative consequences of caregiving, especially for women (NAC and AARP 2009; Pinquart and Sorenson 2006; Yee and Schulz 2000). Rather than focusing on the problems caregivers face, this study suggests that caring for an aging parent can foster personal and psychological growth and even proactive planning for late life. For some women, caregiving during midlife may trigger an awareness of mortality and a change in priorities resulting in activities or preparation that promotes successful aging. This research contributes to a more comprehensive understanding of the caregiving experience. Future studies should include other caregiving populations such as male caregivers, who now represent at third of family caregivers to older adults (NAC and AARP 2009). Interviewing former caregivers, rather than individuals currently providing care, could also be informative because they would not currently have the responsibilities and stress of caregiving. It is possible that the passage of time could allow for more reflection about how the caregiving experience has influenced their perspectives on aging.
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