Research in Gerontological Nursing

Empirical Research 

Caregivers’ Deepest Feelings in Living with Alzheimer’s Disease: A Ricoeurian Interpretation of Family Caregivers’ Journals

Heide Christine Bursch, PhD, MSN, RN; Howard Karl Butcher, PhD, RN

Abstract

Caring for a person with Alzheimer’s disease (AD) challenges family caregivers with existential questions about what is the right thing to do for themselves and their care recipient. This study extracted themes spontaneously occurring in self-disclosure through expressive writing and sheds phenomenological insight into the deepest feelings revealed by caregivers of loved ones with AD. The personal journals of 24 caregivers were analyzed in the framework of Ricoeur’s philosophy of ethics based on the concept of personal identity. Caregivers reflected on themes in friendship, self-esteem, authenticity, and capacity to act with the ethical intention to stay present while the care recipient is disappearing. Engaging the text within Ricoeur’s ethically sensitive philosophy and methodology illuminated the benefit of writing interventions that allow caregivers to speak about conflicted states regarding their own humanity in the caregiver experience.

Abstract

Caring for a person with Alzheimer’s disease (AD) challenges family caregivers with existential questions about what is the right thing to do for themselves and their care recipient. This study extracted themes spontaneously occurring in self-disclosure through expressive writing and sheds phenomenological insight into the deepest feelings revealed by caregivers of loved ones with AD. The personal journals of 24 caregivers were analyzed in the framework of Ricoeur’s philosophy of ethics based on the concept of personal identity. Caregivers reflected on themes in friendship, self-esteem, authenticity, and capacity to act with the ethical intention to stay present while the care recipient is disappearing. Engaging the text within Ricoeur’s ethically sensitive philosophy and methodology illuminated the benefit of writing interventions that allow caregivers to speak about conflicted states regarding their own humanity in the caregiver experience.

Alzheimer’s disease (AD) is perhaps the most pernicious disease of modern times. The tragedy of the illness is compounded by the toll it takes on family caregivers who, for many years, must bear witness to the gradual and inexorable degeneration of a loved one. While caring for a loved one with AD changes an individual’s life profoundly, there is currently little description of how emotions and thought processes are constitutive of caregivers’ self-esteem and ability to function in their role. To make visible discourse with underlying ethical and moral principles in the caregiver experience, the written journals of 24 caregivers were analyzed using an interpretive method based on the hermeneutic phenomenology of Paul Ricoeur.

Background

Up until now, health care providers’ understanding of the caregiver experience is derived mainly from surveys; closed-ended questions; and standardized psychometric instruments measuring outcomes such as stress, depression, burden, or self-perceived health, which could all be hypothesized to be results of conflicted internal discourse in caregivers about what is the right thing to do for themselves and their care recipients. This hermeneutic phenomenological analysis of caregivers’ journals uses the method of understanding and explanation informed by the French philosopher Paul Ricoeur, whose philosophical perspective provides an understanding of what it means to be human.

In his major work Oneself as Another, Ricoeur (1994) outlines a philosophy of ethics based on the concept of personal identity. At the core of his philosophy is the concept of dialectical autonomy, which means that the self is always in relation to the other. Self-actualization, as in authentically integrating the self and the other, plays out on a continuum of friendship with the other, where self-esteem is both given to and received from the other. Self-esteem confers capacity to act, a term that correlates with the concept of autonomy in contemporary discourse. Only the human being with capacity to act is able to actualize his or her ethical intention, which according to Ricoeur (1994) can be described as “aiming at the good life with and for others in just institutions” (p. 172). The good life is “the nebulus of ideals and dreams of achievements with regard to which life is held to be more or less fulfilled or unfulfilled” (Ricoeur, 1994, p. 179). Life takes place in the institutions of our world (i.e., language, religion, family, political structures, the law, or a health care system). Human beings seek for and require justice within these institutions to realize their ethical intention and find happiness.

Ricoeur viewed any story about lived experience to be the reflection of an individual’s search for meaning and coherence in dialogue with self, the other, and the world. By developing a method from Ricoeur’s theory of interpretation, nurse researchers can achieve congruence between philosophy, methodology, and method. Grounded in the interrelationship between epistemology (interpretation) and ontology (interpreter), the hermeneutic arc of Ricoeur moves the interpreter from naïve understanding limited by distinct world views of interpreter and author to intersubjective understanding, in which the text is seen in relation to the author, interpreter, and the world (Geanellos, 2000). Swedish researchers developed a three-step process for hermeneutic phenomenological analysis (Lindseth & Norberg, 2004; Wiklund, Lindholm, & Lindström, 2002) based on Ricoeur’s hermeneutic arc, including the steps of naïve reading, structural analysis, and critical interpretation. Since the 1990s, this method has been used by Scandinavian health science researchers in numerous studies to elicit meaningful data about a wide range of caregiver experiences. For example, Eriksson and Svedlund (2006) found that spouses of chronically ill individuals experienced not only a change in the relationship but a sense of detachment from their partners’ lives, resulting in loneliness. Elsewhere, nurses who cared for disabled patients with provoking behaviors such as spitting, biting, and hitting had to overcome symbolic attributions of evil to find meaning in caregiving (Hellzen, Asplund, Sandman, & Norberg, 2004). Häggerström, Skovdahl, Fläckman, Kihlgren, and Kihlgren (2004) showed that formal caregivers in nursing homes felt overwhelmed and “insufficient” and saw themselves as betrayed by the formal care system as well as betraying the patients in their charge.

Method

Sample

The caregivers’ journals originated from a larger study designed to test the effect of written emotional expression on finding meaning, caregiver burden, stress, and depression (National Institute of Nursing Research grant 1R15NR8213-01). A total of 44 family caregivers were recruited from presentations at AD support groups and through news media in southern Iowa and were randomly assigned to the experimental group (N = 27). Exclusions for participation were medications and medical conditions affecting cortisol metabolism and current memory or thinking problems. All participants completed serial measurements of finding meaning, caregiver burden, depression, and physical symptoms of stress and saliva cortisol, and wrote for 20 minutes every other day for a total of 3 days. Caregivers in the comparison group wrote about neutral topics such as food preparation or personal interests, while participants assigned to the experimental group wrote of their deepest feelings about being a caregiver. Texts generated from the following writing instructions for the experimental group were included in this analysis:

I would like you to write about your deepest emotional thoughts and feelings about caring for your loved one who has Alzheimer’s disease. In your writing, I want you to really let go and explore your very deepest emotions and thoughts. Ideally, you would focus on those experiences, changes, thoughts, and feeling that you have not discussed in great detail with others.

Caregivers were White, mostly women, retired, and spouses of the care recipient. The sample included 13 wives, 3 husbands, 7 daughters, 2 daughters-in-law, and 2 sons and ranged in age from 45 to 80 (mean age = 64). They were generally educated beyond high school, came from all income brackets, were retired, and denied financial hardship from caregiving. Most of them lived with the care recipient and spent an average of 126 caregiving hours weekly, without formal caregiving training. They attended support groups, and few had a habit of keeping a journal. Care recipients were reported to have had memory changes for an average of 77.6 months (range = 6 to 148 months) (Table 1).

Sociodemographic Characteristics of Caregivers (N = 27)

Table 1: Sociodemographic Characteristics of Caregivers (N = 27)

Data Collection

Participants were instructed to chose a convenient time in their home, to stop writing after 20 minutes, and not to be concerned about spelling, grammar, sentence structure, or the visual appearance of their documents. The primary researcher (H.K.B.) acknowledged that they might experience transient emotional distress in the process of writing and made himself available for consultation if needed. Participants were protected under rules and regulations of the Institutional Review Board, were assured confidentiality, and were free to discontinue participation in all parts of the study at any time. They were given the option of returning their writings by mail for further analysis in the study; all participants did so. The entire database of handwritten journal entries was de-identified, transcribed, and entered into NVivo 7 software. Coding and identification of themes proceeded in groups of eight participants at a time. The second and third groups of eight did not yield additional themes but contributed to the richness of each theme. Because it was believed that saturation of themes had been achieved after eight sets, three sets of journals that returned late were not included in the analysis.

Data Analysis

Hermeneutic phenomenology according to Ricoeur is grounded in an attitude of distanciation to transition perspectives in all steps of the hermeneutic arc. Distanciation defines the nature of understanding and explanation and becomes a tool to preserve rigor or credibility in each step of the hermeneutic arc.

Methodologically, the overall credibility of a hermeneutic phenomenological study rests in the concepts of fittingness, confirmability, and auditability (Sandelowski, 2006). While this study was not originally designed to be subjected to hermeneutic phenomenological analysis, both the type of questions posed to induce deep reflection and the willingness of participants to engage with these questions produced a text that was both descriptive and interpretive and fitting to answer the research question of what it felt like to be caregiver for a person with AD. The confirmability of these findings had to be qualified: Understanding as arrived at from guessing and validation through interpretation within the hermeneutic circle did not claim to find empirical verification of truth. As in a multiple correlation study, the researcher-interpreter (RI) (H.C.B.) accounted for values and preconceptions to arrive at qualitative probability for her findings in discussions with experts in caregiving in the United States and application of the method with experts in Sweden. For the purpose of auditability, the RI organized the texts, a reflexive journal, and records of her decision trail in NVivo 7 software for systematic data analysis and reviewed samples of coding with the primary investigator (Crist & Tanner, 2003; de Witt & Ploeg, 2006).

Step 1 of Analysis: Naïve Reading

The RI deliberately entered an I-you relationship with each participant in reading and re-reading the journals, suspending judgment and any temptation to interpret the text. In a mental space of solicitude and openness, the RI became aware of her own pre-understandings to formulate questions to the text, guiding her structural analysis later on, for example, “What happens when a caregiver tends more to the lack in the care recipient than to what is lacking in herself?” or “How are interactions with individuals with AD and related disorders perceived to be abnormal?”

A metasummary yielded the following understanding: Most caregivers told the story of becoming a caregiver and how it had changed their lives. They reflected on the presence or absence of family support. Most felt isolated in some way, and family conflict was draining. As they told stories of daily life with the care recipient, a wide range of feelings were expressed: depression, sadness, and grief; anger, frustration, annoyance, and boredom. All believed that things could be much worse and they were uncertain about how they would cope in the future.

Step 2 of Analysis: Structural Analysis

In structural analysis, the RI performed line-by-line coding for meaning units first with elements constituting the sense (what was said) and second, the reference (what was talked about). Participants’ original emphases in capitalization and underlining were retained in transcription and are reproduced in the quotes cited below. By linking sense and reference, the RI began to identify concepts found in the text (Table 2).

Example of Structural Analysis

Table 2: Example of Structural Analysis

Concepts were condensed from clusters of meaning units according to similarities in the form of 12 subthemes, which were ultimately grouped into four main themes to synthesize essential meaning of the caregiver experience: Feeling Connected or Disconnected in Friendship, Trying to Find Authenticity for Self and Care Recipient, Struggling for Self-Esteem, and Suffering Impaired Capacity to Act (Table 3). Themes were formulated using verbs, because meaning units are composed of action and drama and describe a process, not categories (Lindseth & Norberg, 2004).

Themes and Subthemes of the Analysis

Table 3: Themes and Subthemes of the Analysis

Feeling Connected or Disconnected in Friendship

Friendship connotes both a state and the action of being friendly (i.e., showing concern, interest, and support). It is a relationship of mutual caring where one loves and is loved for who one is, not what one does. Participants experienced friendship in relation to the self, the care recipient, family members and friends, as well as support groups and individuals of authority.

The Experience of Losing Connection to the Care Recipient. There were poignant moments of connection with the care recipient: “This past week, my husband has wanted to give me a kiss. This gives me pleasure and warmth. Somehow, working with him is easier for a time.” However, in writing about friendship, caregivers generally grieved the loss of actual friendship with their care recipient and mourned for friendship that was never going to be. A wife wrote about her altered relationship with her husband: “J. truly does not like having me talk to him and says so. He spends all his time with his books and music, only appears when he needs help. The isolation is killing me. I feel a terrible void.” A daughter noted that her mother’s sudden loving behaviors could not make up for a lifetime of having been denied that sense of friendship: “I really wish that she had told me that she loved me before she got so bad. I hear those words and oh, how I wish I had heard them when I was a child.”

Strategies to Stay Connected to the Care Recipient. Feelings of friendship were mediated through a sense of reciprocity or duty, memories, and grandchildren or pets: “I have a companion, my little dog Murphy. I talk with Murphy like he was human. [My husband] loves the dog too. Needless to say we have one spoiled little critter.”

Experiencing the Presence or Absence of Friendship with Family and Friends. Friendship was experienced by encountering understanding for their own as well as their care recipient’s experience; receiving practical support and respite care; feeling included; and being validated. Caregivers were sensitive to friendship for the sake of utility instead of being loved for the people they were. A wife wrote about her husband: “He is pleasant and happy and even charming, but he does not make me feel special or worthwhile or even competent. I feel he takes me for granted.” A daughter felt used by her family: “I just wish the rest of my family would see that I need to be loved and to be understood. Sometimes I feel like all they want is for me to do something.”

Caregivers described numerous instances of abandonment by family members or friends. A daughter clearly expressed her displeasure:

I’m a bit mad that my sister hardly ever comes to see mom let alone to stay a while with her. Her friends never come to see her either. That pisses me off more than anything. My parents used to have a lot of friends. Not since this damned disease of Alzheimer’s.

Questioning Own Self-Worth. Feeling isolated led caregivers to question their own self-worth: “When I’m lone-some I start to wonder what’s wrong with me. Do I offend, am I boring or what,” which contributed to a constant state of suppressed anger: “Angry at God, Angry at Dad for dying, Angry at my brothers & sisters for not being here to help more, Angry at myself for needing the help.”

Trying to Find Authenticity for Self and Care Recipient

To be authentic means to be true to one’s personality, spirit, or character. It allows individuals to ascribe coherence between who they are and how they should act. With AD, caregivers not only must witness the dissolution of their care recipients’ ability to act in the spirit of their personality, they also must try to recreate their own authenticity in adjusting to the caregiver role.

Witnessing the Care Recipient’s Loss of Authenticity. Caregivers described the ever-growing rift between care recipients’ authentic selves and the emerging disease-related other: What used to be tolerable, such as a husband’s tendency to be a perfectionist, was transformed into offensive, controlling behavior; a good sense of humor was turning into embarrassing silliness; the need for tidiness was now routinely misplacing objects. When residual familiar behaviors mixed with new, seemingly illogical ones, it challenged caregivers’ ability to act authentically, as they found it difficult to control their emotional responses. A wife was trying to understand why her husband felt ill wanting to see the nurse when minutes later he was ready to go play pool, and she concluded: “That leads me to think, he just doesn’t want to commit himself to anything. I am not dealing with it very well.”

Although they understood it to be part of the disease process, many caregivers could not seem to help feeling manipulated and controlled by the personification of the disease in the care recipient: “One has the feeling that if he’d REALLY listen then he’d remember. Or if he REALLY cared he’d remember. Which, of course, is not true.” Struggling to reconcile their care recipient’s personhood with symptoms of the disease, they found it difficult not to label them childish, manipulative, stupid, or even repulsive. A wife humorously wrote: “I am so thankful C. is kind and gentle. But he’s so forgetful and ‘stupid.’ A few minutes ago he brought his shaving brush to me, asking if that is for brushing his teeth!” In the course of dealing with the care recipients’ bodies, caregivers could not even be sure of their loved one’s physical authenticity: “He is cold all the time. Literally, almost shaking with cold—and yet, when I touch him, his body is as warm as toast.” A daughter honestly expressed her revulsion in having to provide personal care for her mother’s estranged body: “I never imagined seeing my mom naked and washing her body. I hate anything dirty so I am constantly washing her things and herself.”

Caregivers wanted to protect care recipients from having to recognize the changes in themselves and the relationship: “He didn’t ask for it and it pains him a great deal when there is evidence of it. Sometimes he can slough it off, but more often than not it depresses him greatly.” Another wife pointed out: “One of the biggest hurts is that I can no longer share with J. my greatest worry and heartache, since he is it.” Caregivers questioned how to stand by their care recipients once all authenticity was gone: “Maybe I don’t love him enough to care the way some people do—visiting all the time when the person is not even ‘there’—I’m afraid I am inadequate to the caring part.”

Experiencing Loss of Authenticity After Assuming the Role of Caregiver. Caregivers reflected on the fit of the caregiver role with their own authentic selves. Some were able to embrace caregiving because they felt it matched their personality: “I tend to be an obsessive person and she has great needs for care. So my obsessiveness in doing a good job on this project is paying off in providing good care to her.” Most of them assumed the role out of necessity, not choice, and acknowledged that caregiving required them to act unauthentically: “In 18 years as an RN nothing upset my stomach(…)but when I’m mopping up stool off the bathroom floor for my own mother it’s all I can do to keep from throwing up.” Another wrote: “I do not get joy from keeping him happy. I keep him happy to keep the peace and continually deny anything I want, need, like.” The role changes associated with increasing dependence of the care recipient seemed unnatural and undignified and implied loss of esteem for the care recipient. It was difficult to regain a sense of friendship after the role change: “Now I have to tell him, ‘You need to bathe, take your medicine, eat lunch,’ and show him how to operate the VCR. I hate being his mother and he dislikes it even more.”

Caregivers spoke clearly about their altered past and future selves: “I am grieving my loss of self. The person I knew as me is going, fading away. I am doing nothing with my life. I am angry that I am allowing this to happen to me.” Struggling with their own authenticity in life with AD, they experienced a sense of unreality and pretense and felt they should be different, better people: “I wish I were more loving towards mom. I do love her but I wish I didn’t get upset about the little things she does.” A wife illustrated her own spontaneous response to her husband’s forgetfulness: “But it’s my lack of patience—and I don’t know what the answer is there. [His forgetfulness] really aggravates me a lot. He doesn’t need a minder, but he does need someone who is gentler and calmer than I.”

Struggling for Self-Esteem

According to Ricoeur, self-esteem arises out of respect accorded to the self on the continuum of friendship either by the other within the self, or the other outside the self, as in friends and just institutions. Self-esteem must therefore be given to caregivers by both their own selves and family and friends, as well as the contexts of their lives.

Strategies to Find Self-Esteem. Caregivers granted themselves esteem from satisfaction with their caregiving skills (“It is a source of some pride or pleasure to know that I have been able to help make a profound difference—a positive one—in someone else’s life”), and they treasured knowledge and information gained from readings or support groups. Another daughter felt morally redeemed: “Caring for my mother has made me realize that no matter what anyone thinks or says to me, I am a good person.” All other sources of esteem were based on relationships with the other outside themselves—supportive family members or friends, God, and sometimes even the care recipient: “He has said many times, ‘What would I do without you.’” One daughter found respect for herself in memories of her father: “My dad would be proud of me if he was here with me taking care of mom.”

Experiencing Threats to Self-Esteem. Caregivers described many acts of actual denial of self-esteem from the care recipient and other family members. A wife gave a vivid description of her husband’s emotionally hurtful behavior:

I could manage to stay calm while he was yelling at me, telling me I was stupid, incompetent, always doing bad things to him. (…) I don’t feel any reflection that I am a good person. In fact no reflection at all. I don’t have to say a word—he doesn’t even notice—He just talks on & on—I am not there!

Care recipients’ or other family members’ lack of insight or denial that something was wrong was particularly challenging: “One of my most stressful aspects of dealing with C. is that he doesn’t believe he has any illness.” A wife said: “Statements like, ‘You are just trying to make me look bad,’ are so very hard to take.” Such assaults on caregivers’ own self-understanding caused confusion and emotional pain: “Sometimes, I feel God has abandoned me and other times, I know that he is there for me. They say there is no rest for the wicked and sometimes, I feel I am the wickedest person in the world.”

Suffering Impaired Capacity to Act

Capacity to act autonomously means to have self-directing freedom and moral independence. Caregivers experienced capacity to act as being able to balance their own autonomy with the needs of the patient. It was facilitated by understanding the illness process, feeling authentic as a caregiver, financial resources, and respite or formal care:

My husband went to a support group meeting when I was really feeling down and got the name of a home health care. Now I have a wonderful woman coming in. I don’t know what I would do if I couldn’t get out.

The Experience of Not Being Able to Act Autonomously. Autonomous action was profoundly impaired for all caregivers: “The changes that have happened in my life because of caring for my mother is so many things. I cannot just get up and go as I used to do. I don’t like that at all.” There were the practical constraints of caregiving and financial worries: “I felt so stuck—my life was over, all our plans, my business, our future was gone. In fact, I saw NO future for me and that was very scary.” The monotony of caregiving prevented caregivers from achieving a sense of accomplishment and satisfaction in their own lives:

But day after day I listen and listen and I am so bored! I can’t seem to get myself together to accomplish much. I get the laundry done—am almost sorry when the ironing’s done because I can’t think what next. I feel loss, loss of me, waste of myself.

Autonomous action was restricted in all dimensions of the present and future. One caregiver, unable to communicate the enormity of the caregiving task and weary of responding to polite how-are-yous wrote: “Most that ask also know I’m caring for M. and don’t realize how time consuming that is—and how it restricts time and activity. Those questions are such a reminder of ‘What if.’”

Limitations to autonomous actions were not only due to social isolation and conflict with other family members but also caregivers’ own physical and emotional limitations, such as their own health concerns and chronic conditions, fatigue, musculoskeletal pain, anxiety, chest pain, stress-related cardiac arrhythmias, or headaches. Caregivers were almost brutally honest about limitations to caregiving due to stress, depression and anger:

I am angry with him. He constantly interrupts me—like now—doesn’t pay any attention to what I say—or doesn’t get it—I am angry at him and angry at me because I lose patience and angry at myself when I am patient because I’m allowing myself to be walked over—I’m a mop! (…) I feel it welling up inside of me and bringing a physical panic in my chest—in spite of the Zoloft!

Anger about their loss of capacity to act was directed at themselves and their situation:

So, Angry—I guess that would sum up my darkest feelings—that this would happen and there’s absolutely nothing I can do to fix it. This should go away but it won’t and then I’m mad at myself because I let these things bother me, and that I can’t find a solution.

But they agreed that anger might spill over into their caregiving: “I am disturbed by the almost constant anger I feel—I know it’s not directed at him but he sure bears the brunt of it.”

The Experience of Autonomy in Changing Settings of Care. Capacity to act was specifically discussed in the context of transitioning to assisted living or a nursing home. Caregivers described guilt and apprehension about what would come next. To assuage the guilt, caregivers needed to be able to reassure themselves that they had done enough: “I’ve come to realize that if the time comes and she needs to go to the nursing home, it’ll be ok. That I did everything I could to take care of her at her home.” They did not know how to deal with the care recipient’s emotional reactions to relocation. Frequently, there was family conflict regarding the cost and quality of care, and it was questioned whether the caregivers’ quality of life merited the emotional and financial expense of formal care: “I’m feeling apprehensive about our move. He won’t like it at all. How can I do this to him? Am I selfish? I feel so guilty—and yet I know I must do something to save myself.” They needed to preserve their own and the care recipient’s dignity in the process, and the experience was more tolerable when the care recipient had made long-term care plans or could actively participate in the arrangement, or when other family members assisted with the transfer. Caregivers worried about their own loss of purpose after handing over care: “I think that will be hard on me. Something will be missing in my life if I don’t have to take care of her. I am so used to it, like a habit you just have to do.”

Worrying About the Future. Lacking any sense of control and trapped in uncertainty, caregivers’ thoughts about their own futures were fraught with anxiety. There were worries about how to continue caregiving given their own health (“I am frightened, and I think he is, too, to think about what would happen if I were to become very ill again or if I died before he does.”) and given the progressive nature of the care recipient’s illness (“I wonder about when things progress to another stage. I really don’t like to dwell on that. What are my options. Just pray it is far away.”). Another participant wrote: “—what is left? Pain for sure, sorrow, loss—the worst is yet to come and I will feel sad but a different sad—Sad that he has to go thru [sic] this, lose himself to himself, suffer indignities.” Yet, they tried to be hopeful: “I know that there is a light at the end of the tunnel but I am not sure where the end of the tunnel is right now.”

Trying to Reclaim Capacity to Act. Caregivers listed various coping strategies to restore feelings of being loved, protecting their own personhood, feeling positive self-worth, and retaining autonomy. Some described taking life one day at a time, gaining insight through knowledge by attending support groups or accepting respite care, and reaching out to supportive family members and friends: “My kids and grandkids are really my saviors. They care and encourage and don’t want to lose me.” They relied on faith and trusting that things will work out (“My God has always provided for my needs. I have no reason to doubt that God will abandon me now [sic].”) or letting go of or holding on to anger, as one daughter described: “I think I’m still going to be angry—hopefully at the disease and not Mom or myself. Sometimes I think the anger keeps me going when I feel the most hopeless.” They tried to escape the caregiving situation mentally (“Sometimes you can care too much and it hurts—then I just stop thinking for a little while until I get myself back under control again.”) or physically (“Sometimes I just get in the car and scream where no one can hear me.”). They found distraction in reading: “I love to read, that is my retreat every day. I close the door and enter a new world. No Alzheimers!!” There was music, exercise, or even going to work: “In all reality my favorite part of the day is when I am at work. Then I don’t have to think about the things that happen at home. It is my release being with people that are normal.”

Invariably, caregivers pointed out that their situation could be much worse: “I dislike my life but I know it could be worse and probably will get horrid before it is all said and done.” They were unsure how they would cope in the future.

Step 3 of Analysis: Critical Reflection and Implications for Practice

In critical reflection, the RI tested the fit of subthemes and themes within the context of Ricoeur’s philosophy of ethics, discussion with other experts in the field, and sensory perceptions as described in metaphors shining light on the phenomenon. These different perspectives allowed for the emergence of the phenomenon of the caregiver experience as a whole. Caregivers experienced profound alienation not only from the care recipient and support system, but also from their own selves. Their inability to find self-actualization in the role of caregiving was due to disregard for themselves in friendship relationships, having to act unauthentically, and lacking self-esteem and capacity to act autonomously. Caregivers revealed in their journaling that it was difficult to formulate an ethical intention for their life plan because happiness and self-actualization were inextricably tied to nursing home placement or death of the care recipient. Integration of the four themes within Ricoeur’s philosophy of ethics therefore revealed the essence described by caregivers in their journaling: trying to stay present while the care recipient was disappearing.

Consistent with previous findings, participants identified issues related to self-care as one of the most challenging aspects of being a caregiver (Habermann & Davis, 2005) and described how skill development was linked with emotional acceptance in a synergistic and transformative process over time (Farran, Loukissa, Perraud, & Paun, 2004). They gave deeply moving descriptions of resentment, depression, and anger which have been linked to quality of care for older adults and potentially harmful behaviors (MacNeil et al., 2010) and were generally insightful in attributing these feelings to low self-esteem from loss of friendship and autonomy.

Their anger mirrored descriptions from an AD support group in Israel: Sources of anger were the loss of the patient to the disease, feeling tied down in the present, and being unable to plan a future. Participants were ashamed to feel and express anger. Self-directed anger was closely tied to depression (Tabak, Ehrenfeld, & Alpert, 1997). In a retrospective study of 20 bereaved caregivers, Juozapavicius and Weber (2001) traced sources of guilt and anger to regret for lack of patience and understanding, having to place the patient in a nursing home at the end of the disease, financial strain, and needing to ask for help, as well as other family members’ denial of the disease. Loss of self-esteem and resulting guilt and anger extended beyond the patient’s death, and these caregivers recommended to keep a journal as coping mechanism.

Sanders, Rogers, Gately, and Kennedy (2008) identified high levels of grief in AD caregivers; yet, caregivers may tend to interpret their feelings as anger and depression (Walker & Pomeroy, 1997). Health care providers can be instrumental in re-framing caregiver emotions to relieve guilt and break the vicious circle of anger directed at the self. Wuest, Ericson, Stern, and Irwin (2001) conceptualized disconnected social support as failure to acknowledge all aspects of the caregiving situation, including family conflict and denial. To rally support for the caregiver, health care providers may need to direct information beyond the patient-caregiver dyad at the entire family unit.

In describing their own struggles to stay present, journal writers used metaphors: closing the chapters on their own life, wilting and turning brown and shriveled like the leaves on a tree in the fall, being crushed by the closing in of AD, living in a different world, becoming invisible, trying to stay afloat, and even drowning. For example, a participant stated:

I had huge waves of fear, disbelief mixed with knowing that it was coming. I wanted someone to tell me exactly what to do—I was at sea—waffling around, panicked and anxious. (…) I am cross that I am letting go of myself. It is so easy to do nothing, just let go—kind of like drowning—in very deep water—just relax and become nothing.

Limitations

Interpretation of these 24 caregiver journals revealed not only a description of the lived experience of AD caregiving but also illuminated how caregivers used the intervention of journaling to restore a sense of self in their ongoing efforts to stay present while the care recipient is disappearing. Findings from this study are limited based on the demographic characteristics of the participants and the fact that they were comfortable in expressing themselves in writing. Caregivers generally did not list specific caregiver duties, only those that affected them emotionally. Furthermore, the level of cognitive impairment in each care recipient was not measured, because no care recipient data were collected. Writing time was prescribed for both the experimental and control group, and some participants wanted more or less time. More research is needed to determine the characteristics of caregivers who might benefit from a writing intervention and what dose and structure is needed to achieve sustained effects.

Conclusion

In this study, caregivers found justice and capacity to act within the institution of language: to write about communication that was denied them by their care recipients or dissenting family members, about being trapped in language of despair or anger, or about losing their voice all together. Journaling or conversations in strictly “listening” relationships with health care providers may help caregivers reclaim their voice for an ethical intention that allows for happiness and self-actualization in daily caregiving tasks.

References

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Sociodemographic Characteristics of Caregivers (N = 27)

Variable Mean (SD), Range
Caregiver age (years) 64.3 (9.5), 45 to 80
Education (years) 16.0 (2.7), 12 to 22
Weekly hours of caregiving 125.5 (58.2), 4 to 168
Weekly hours of professional or hired help 17.8 (40.2), 0 to 168
Months since memory changes of care recipient 77.6 (42.2), 6 to 148
n(%)
Sex of caregiver
  Female 22 (81)
  Male 5 (19)
Ethnicity
  White 27 (100)
Caregiver living situation
  With care recipient only 16 (59)
  With care recipient and others 6 (22)
  With others but not with care recipient 3 (11)
  Alone 2 (7)
Received care training
  No 23 (85)
  Yes 4 (15)
Attends support group
  Yes 18 (67)
  No 9 (33)
Relationship to care recipient
  Spouse 16 (59)
  Child 9 (33)
  Other relation 2 (7)
Employment status
  Retired 14 (52)
  Working full time 5 (19)
  Homemaker 4 (15)
  Working part time 2 (7)
  Other 2 (7)
Caregiving role caused financial burden
  No 22 (81)
  Yes 5 (19)
Income (yearly)
  <$10,000 2 (7)
  $10,000 to $30,000 10 (37)
  $31,000 to $50,000 7 (26)
  >$50,000 8 (30)
Writes in journal or diary
  Never to twice per year 19 (70)
  Every few months to twice per month 3 (11)
  Once per week 1 (4)
  Twice per week to every day 4 (15)

Example of Structural Analysis

Meaning unit “I see myself as C.’s “activity director.” This evening we watched TV. I was accustomed to being busy and productive, but now feel I need to adjust to C.’s pace and interests. It is lonely, in a way. I should enjoy this lazy afternoon and day! But I feel obligated to spend it with C., making trite conversation, enjoying nature, laughing.”
What is the text saying? (sense)

Action units: “I was…but now feel I need to…. I should…. But I feel obligated.”

Drama units: feels lonely, unproductive, lazy, trite

What is the text about? (reference) Re-naming self, questioning who one is in the role of caregiver: Being a caregiver requires you to give up valued parts of your old self.
Subtheme Experiencing loss of authenticity after assuming the role of caregiver

Themes and Subthemes of the Analysis

Theme Subtheme
Feeling connected or disconnected in friendship

The experience of losing connection to the care recipient

Strategies to stay connected to the care recipient

Experiencing the presence or absence of friendship with family and friends

Questioning own self-worth

Trying to find authenticity for self and care recipient

Witnessing the care recipient’s loss of authenticity

Experiencing loss of authenticity after assuming the role of caregiver

Struggling for self-esteem

Strategies to find self-esteem

Experiencing threats to self-esteem

Suffering impaired capacity to act

The experience of not being able to act autonomously

The experience of autonomy in changing settings of care

Worrying about the future

Trying to reclaim capacity to act

Authors

Dr. Bursch is Lecturer, and Dr. Butcher is Associate Professor, The University of Iowa, College of Nursing, Iowa City, Iowa.

The authors have disclosed no potential conflicts of interest, financial or otherwise. This research was supported by funds from the National Institute of Nursing Research #1R15NR8213-01, the John A. Hartford Foundation Building Academic Geriatric Nursing Capacity Pre-Doctoral Program, and the Claire M. Fagin Post-Doctoral Scholars Program.

Address correspondence to Heide Christine Bursch, PhD, MSN, RN, Lecturer, The University of Iowa, College of Nursing, 50 Newton Road, Iowa City, IA 52242; e-mail: heide-bursch@uiowa.edu.

Received: January 18, 2011
Accepted: August 19, 2011
Posted Online: June 15, 2012

10.3928/19404921-20120605-03

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