Journal of Gerontological Nursing

THE DARK SIDE OF CARING: Challenges of Caregiving

Anne Boykin, PHD, RN; Jill Winland-Brown, EDD, RN

Abstract

This article focuses on the findings of a phenomenological study that uncovered the human experience of unending care. Self-sacrifice, living in the moment, unending care, and overwhelming frustration and guilt were unveiled struggles. Wilson's (1989a) article that reports on the course of AIzheimer's disease as experienced by caregivers cites the following comments, which help us to understand the experience of caregiving:

It becomes a question of how far up to the absolute edge of your energy you can go (p, 44).

I had to face what it was doing to me and to my family. I hated the exhausted desperate person I was becoming (p. 44).

Wilhoite and Buschmann's (1991) diary of a caregiver offers further insight of a loved one's journey with a spouse afflicted with Alzheimer's disease. The caregiver reports:

We no longer meet with our friends. Entertaining became a disaster. Sam seldom talks . . . just paces from room to room. Except for Rita, our friends seldom call. Those who do seem to be calling out of curiosity. Our social life is gone. Thank God I still have Rita (p. 21).

The purpose of this study was to attempt to grasp an understanding of the experience of being a caregiver for a loved one who has Alzheimer's disease. The researchers were asking, "What is it like to be a caregiver for a relative with Alzheimer's disease?"

SAMPLE

This purposive sample of five relatives - three spouses, a daughter, and a daughter-in-law - was accessed through a county Alzheimer's day care center. All participants were the major caregivers who lived with their relative with Alzheimer's disease without live-in help. They used day care two mornings a week as a source of respite.

The spouses, two males and one female, were all in their 70s and retired. One man was in his second marriage, the other two spouses had been married to their partners for more than 50 years. The daughter and daughter-in-law were both between 46 and 55, only one worked part-time outside of the home during the time her mother-in-law was in day care. The length of time that the caregivers cared for their relative with Alzheimer's ranged from 6 months to 6 years.

PROCESS AND FINDINGS

Prior to the analysis of data using Colaizzi's (1978) phenomenological method, pre-understandings and assumptions were discussed by both researchers and set aside.

A review of relevant literature was not conducted until after the themes emerged as an additional step to prevent possible bias during the interviews with the participants.

Each caregiver was asked to respond verbally to the following statement:

"Please describe your experience of being a caregiver for your relative with Alzheimer's disease. Share all thoughts, perceptions, and feelings until you have no more to say about the experience."

Table

Theme 2 - Caregivers find courage to continue through sharing and living in the moment

All of the relatives mentioned the need to share the experience either formally with support groups for caregivers of persons with Alzheimer's, or informally with relatives and friends. As one woman stated, "My husband is amazed that I've been able to adjust. But I have a daughter who majored in psychology, so when I have a little problem, I call her up and say, 'listen, I need a jam session/ So, she does that for me."

Living in the moment requires flexibility and adapting to new patterns. One husband stated, "I get up early so I can have some time to prepare my thoughts for the day to deal with things."

Another husband shared how he changed his normal activities to adapt to…

This article focuses on the findings of a phenomenological study that uncovered the human experience of unending care. Self-sacrifice, living in the moment, unending care, and overwhelming frustration and guilt were unveiled struggles. Wilson's (1989a) article that reports on the course of AIzheimer's disease as experienced by caregivers cites the following comments, which help us to understand the experience of caregiving:

It becomes a question of how far up to the absolute edge of your energy you can go (p, 44).

I had to face what it was doing to me and to my family. I hated the exhausted desperate person I was becoming (p. 44).

Wilhoite and Buschmann's (1991) diary of a caregiver offers further insight of a loved one's journey with a spouse afflicted with Alzheimer's disease. The caregiver reports:

We no longer meet with our friends. Entertaining became a disaster. Sam seldom talks . . . just paces from room to room. Except for Rita, our friends seldom call. Those who do seem to be calling out of curiosity. Our social life is gone. Thank God I still have Rita (p. 21).

The purpose of this study was to attempt to grasp an understanding of the experience of being a caregiver for a loved one who has Alzheimer's disease. The researchers were asking, "What is it like to be a caregiver for a relative with Alzheimer's disease?"

SAMPLE

This purposive sample of five relatives - three spouses, a daughter, and a daughter-in-law - was accessed through a county Alzheimer's day care center. All participants were the major caregivers who lived with their relative with Alzheimer's disease without live-in help. They used day care two mornings a week as a source of respite.

The spouses, two males and one female, were all in their 70s and retired. One man was in his second marriage, the other two spouses had been married to their partners for more than 50 years. The daughter and daughter-in-law were both between 46 and 55, only one worked part-time outside of the home during the time her mother-in-law was in day care. The length of time that the caregivers cared for their relative with Alzheimer's ranged from 6 months to 6 years.

PROCESS AND FINDINGS

Prior to the analysis of data using Colaizzi's (1978) phenomenological method, pre-understandings and assumptions were discussed by both researchers and set aside.

A review of relevant literature was not conducted until after the themes emerged as an additional step to prevent possible bias during the interviews with the participants.

Each caregiver was asked to respond verbally to the following statement:

"Please describe your experience of being a caregiver for your relative with Alzheimer's disease. Share all thoughts, perceptions, and feelings until you have no more to say about the experience."

Table

FIGURE 1Selected Examples of Statements and Meanings

FIGURE 1

Selected Examples of Statements and Meanings

During the interviews with the participants in this study, the researchers asked only the one broad question and then used words to encourage further sharing such as "can you say more about that?"

The researchers were authentically present with the caregiver during the interview and used the following communication skills: silence, reflection, and clarifying.

All the caregivers were interviewed privately; four in a separate closed room of the day care center and one in a separate closed room of the county Alzheimer association office. All the interviews were tape recorded and then transcribed. After five interviews were completed, descriptions of the experience of being a caregiver became repetitious and no new ideas emerged. When mis occurred, no new participants were sought.

Transcriptions were analyzed using the following phenomenological method as described by Colaizzi:

* Extraction of significant statements after dwelling with the data;

* Formulation of meanings through the analysis of significant statements;

* Creation of themes from the formulated meanings;

* Creation of an exhaustive description of the phenomena and validation of the description by the participants.

The first step involves the extraction of significant statements, which, according to Colaizzi, are statements pertaining to the phenomenon. Significant statements that directly pertained to the phenomenon of unending care, love, and frustration were independently extracted by each researcher and then shared.

Thirty-nine significant statements emerged after repetitious statements were eliminated. After significant statements and phrases were extracted, meanings were then formulated. Examples of significant statements and their corresponding formulated meanings are given in Figure 1.

Clusters of themes were organized from the formulated meanings. An example of the decision trail used for two of the cluster themes is given in Figure 2. The original number of the significant statements from which the formulated meaning was derived are listed in parentheses in the Table. Four theme dusters emerged from the data.

Theme 1 - The progression of the disease results in feelings of frustration and a sacrifice of self

Some of the participants' comments that illustrate this struggle follow:

I love my wife of 55 years but there are points of frustration where you sort of lose your cool.

It's so transitional, that you're not aware of it. Ultimately, you find yourself doing things you never dreamed of doing before. So far, I'm not bothered too much because we're keeping as busy as we can.

I take it one day at a time. I need to get out. How long can I do it ... I don't know. I'll do it as long as I can, and then I'll have to make other plans. I don't think I've reached that point. You never know what you can handle unless you have to. The human body is resourceful, and can do a lot of things.

Caregivers expressed that because of the subtleness of the progression of the disease, they found themselves gradually allocating increased amounts of time and energy to the care of their loved one. Although there is a desire on the part of caregivers to spend the necessary time with the person experiencing AIzheimer's disease, they nonetheless express constant struggles with the increased demands placed on them and their need to make difficult choices.

Typically, it was not until caregivers looked back over their caretaking responsibilities that they realized that they were now spending more time caring for their loved ones and less time caring for self. Many commented that they could not do things they would ordinarily do because they had to constantly supervise their relative. The importance of respite care was shared by many.

One husband stated, "I don't know how I'd survive without the break of day care when I can accomplish many little things 1 have to do."

Several of the participants mentioned the frequent mood changes and the need to adapt to them. One man stated that "she doesn't remember what I tell her so I give her short, straight answers."

Another stated, "when she is belligerent, nothing I say will have any effect on her."

Adapting to the mood changes affects relationship patterns. At times, the relationship may be husbandwife (adult-adult); at other times it changes to a parent-child relationship. As one husband said, "it's exasperating when I have to treat her like a small child, helping her eat, going to the bathroom, etc."

Table

FIGURE 2Examples of IWo Theme Clusters With Their Subsumed formulated Meanings

FIGURE 2

Examples of IWo Theme Clusters With Their Subsumed formulated Meanings

Theme 2 - Caregivers find courage to continue through sharing and living in the moment

All of the relatives mentioned the need to share the experience either formally with support groups for caregivers of persons with Alzheimer's, or informally with relatives and friends. As one woman stated, "My husband is amazed that I've been able to adjust. But I have a daughter who majored in psychology, so when I have a little problem, I call her up and say, 'listen, I need a jam session/ So, she does that for me."

Living in the moment requires flexibility and adapting to new patterns. One husband stated, "I get up early so I can have some time to prepare my thoughts for the day to deal with things."

Another husband shared how he changed his normal activities to adapt to her increasing 'needs when he stated, "I walk around the parking lot now for exercise instead of all over to make sure she doesn't leave the house." Several relatives mentioned that they were coping only by "focusing on one moment at a time." Several other comments from participants that reflect this theme are:

So, I think the hardest part sometimes, is switching the way you feel and the way you're acting that day to match it up (with the client's behavior - acting like a child or an adult). But, basically, at this point, I think I'm coping fairly well. There are days that my husband lets me unload, when he's home. He gives me a day out. I go out and do some shopping, just for me.

Before the day care, I have to admit that I was having some anxieties about how I was ever going to do this. You know, like go to the doctor, and take care of some things that are necessary? So, day care has been a little heaven to me. And the rest of the week is easier for me. I think most caregivers, if they're allowed just a couple of days a week, will get a new perspective on how to care.

Theme 3 - Altered perceptions of reality and time result in the need for constant supervision

Some of the participants' comments that reflect this altered time perception follow:

She wakes me up in the middle of the night and I am trying to get some sleep cause I am going to work the next day and I growl at her and it doesn't make me feel good.

She'll go to bed at 6 or 7 p.m., and then she'll get up again and she'll get dressed and then she'll get undressed again. She'll do this two or three times during the night.

There are some mornings when I'll go in and she'll still be in her robe. I'll say, "Well, guess we need to get our clothes on, don't we?"

I'm with "it" all the time; 24 hours a day. And I've just come to accept it. It's just like a child. A child has to be checked at night, and given formula or whatever.

All of the caregivers shared that time as a concept no longer had meaning for their relatives and that patterns of the past that were based on time of day, such as getting undressed at night, or taking a shower in the morning, were no longer patterns of the moment. Several care- givers mentioned that the worse times of day were late night and early morning. One husband was distraught with lack of sleep as he said his wife's "pattern is to go to bed, rise, dress, undress, and repeat this through the night."

Another husband had to keep all of the doors locked with notes on them reminding his wife not to go out without waking him for fear that she would wander outside during the night. This had happened in the past and the police had to be notified to assist in searching the neighborhood. He further stated that while he was concerned for her safety he also feared that if he should be incapacitated, for example by a fire, that his wife may not be able to exit if the doors were locked.

Theme 4 - Caregivers struggle with guilt as they try to be authentically "with" and to retain respect and dignity of loved ones

Some participants' comments that reflect this struggle include:

Sometimes I tell her I'm sorry. I tell her that I know I don't treat her right all the time. I am really sorry and everyday I get up and I am going to do it better, I have failed so many times.

It's the emotional aspect of it that really hurts you. It never leaves me. I feel this guilt because I think I don't treat her right all the time and I feel guilty.

I'm constantly on guard. So, I think that puts a little stress on a caregiver. Trying to remember if they're to be treated that day, always with dignity, but sometimes dealing with them (like a child).

While most caregivers stated that it would be "easy" to let their relatives sit for hours in front of the TV, they recognized that their loved one needed stimulation. Although caregivers expressed the concern that their loved ones participate in social interactions as long as possible, they also acknowledge that creating these possibilities required unending energy.

Several caregivers found that music provided a source of momentary coherence and one spouse stated that, at times "she'll remember the composer, the conductor, and the name of the piece, but not my name." Most caregivers experienced feelings of guilt for treating their loved oneas a child or for responding angrily in vulnerable moments. The woman caring for her mother stated, "I often feel guilty over how I treat her. My husband and I are both scared."

The final procedural step of data analysis in Colaizzi's method involves integrating the results of the data analysis into an exhaustive description. This study uncovered the human experience of unending care and the paradoxical struggles of love and frustration. Self-sacrifice, living in the moment, unending care, and overwhelming frustration and guilt were revealed as part of the struggle.

Although Colaizzi's final step involves returning to the participants with the exhaustive description, the researchers were not able to recontact the study participants. However, they returned to the same day care center and shared the themes and exhaustive description from this study with other caregivers. They were asked to share whether these themes rang true to their own experience.

Three females and two males (three spouses and two daughters) participated in this step and were approached individually in a private area of the day care center. Not only did each person state "absolutely true," or "yes," but they all wanted to tell their individual story as to how these themes lived in their own experience of caregiving. After reading the themes and exhaustive description, one individual stated, "I didn't think anyone knew me that well." Because these themes and the exhaustive description rang true with these caregivers, it appears the findings resonate with the experience of being a caregiver.

PERSPECTIVES FROM THE LITERATURE

Much has been written on the etiology (Kvale, 1986; Hoch, Reynolds, Nebes, Kupper, Berman, & Campbell, 1989; Cook-Deegan, Mace, Bailey, Chaukin, & Hawes, 1988) and manifestations (Dawson, Kline, Wiancko, & Wells, 1986) of Alzheimer's disease. A recent article, however, proposes a research agenda for Alzheimer's disease that would use qualitative methodologies in order for the experience of caregiving to be understood. Kuhlman, Wilson, Hutchinson, and Wallhagen (1991) state "methodologie advancement should include qualitative study designs such as ethnography, hermeneutics, and grounded theory to grasp the experience and practices of Alzheimer's caregiving and symptom management in context" (p. 335).

Caring for a loved one who has Alzheimer's disease carries with it a complexity of feelings and responses. As a caregiver in this study stated, "It's difficult understanding the many different feelings that I experience." Wilson's (1989b) grounded theory study of the lived experience of caregivers identified a three-stage process that was used to cope with negative choices.

These stages were: Taking it on, which involved uncertainty and unpredictability as new roles were taken on with prior responsibilities. Going through it, the next stage, revealed the unending sequence of problems that resulted in "a prolonged state of fatigue, a sense of putting one's own life in suspension, physical and emotional exhaustion from continuous caring, and responses from others that range from embarrassing praise to painful criticism" (Wilson, p. 96). The last stage, Turning it over, is gradual and results in the caregiver's surrendering of care.

The works of various authors lend credence to the stages described by Wilson. Given, Collins, and Given (1988) report that women are the largest group of caregivers and that those most uncertain about their employment future seemed to suffer the most stress related to caregiving. Rabins, Mace, and Lucas (1982) report many caregivers were afraid to leave or sleep for fear the care-receiver may cause injury to self. In their study, they found 87% of the caregivers cited fatigue, anger, or depression as a problem.

In a study on family caregivers of older adults, Sayles-Cross (1993) found that caregivers experienced social distance in caregiving as well as multiple Stressors. Coping was difficult and caregivers accepted their role by "holding back from doing what they wanted to do" (p. 91). Johnson and Catalano (1983) describe role regression and role entrenchment as caregivers focus almost entirely on caring for spouses.

These authors support the statement by Kuhlman et al. (1991) that qualitative studies are necessary if experiences are to be understood. This phenomenological study attempted to uncover the meaning of a particular phenomenon as lived. As a human science, phenomenological research strives to interpret and understand rather than to observe and explain the phenomenon under study.

DISCUSSION

Although much has been written about Alzheimer's disease, this particular study offers new insights on the paradoxical struggles of being a caregiver and on the nature of caring. Exemplified in the study are the many struggles and feelings experienced by caregivers - the struggles of love and frustration. The love drives the depth of the daily commitment to provide the care necessary moment to moment. The stories exemplify unending frustration, and provoke the question, "Is there a dark side to caring?"

We believe that all persons are caring by virtue of being human. This does not mean that every act of a person is caring but that fundamentally persons are caring. It is the "light" or "bright" side of caring that generally is portrayed. Is there another view for knowing caring?

Many caregivers reported a sense of betrayal with resulting guilt. Mayeroff (1971) in his book, On Caring, states that in caring we commit ourself to others and that if a break occurs in this relationship due to "indifference or neglect, I feel guilty"(p. 35).

Stories of caregivers point out the importance of consciousness to the continual process of unending care. The guilt served as an opportunity for caregivers to reflect on and gain greater insight into self and other. The guilt seemed to help caregivers return to their basic commitment - commitment to someone that mattered.

The love was again brought to life. Thus, the resultant theme of paradoxical living out of frustration and love emerges. The caregiving experience illustrates "there are ups and downs in caring" (Mayeroff, 1971, p.32).

In caring for persons with AIzheimer's disease, caregivers have difficulty finding reciprocity in caring. Boykin and Schoenhofer (1993) state "caring is living in the context of relational responsibilities." Perhaps the difficulty of the caregiver to know (to experience) this mutuality is a silent factor contributing to the frustration.

This study indicates a call for nurses to understand the experiences, challenges, and complexities of caregiving. It also points to the need for nurses to support caregivers as they struggle in continuing to know the cared-for as a special and unique person. This support may prevent caregivers from viewing their loved one as an object and prevent some of the prevailing guilt expressed by participants in this study.

Knowledge gained through this study provides insights essential to the practice of nursing. The role for nursing is to hear these stories and to nurture caregivers so they may continue to live their own unique hopes and dreams in the struggle of frustration and love as they provide unending care moment to moment.

REFERENCES

  • Boykin, A., & Schoenhofer, S. (1993). Nursing as caring: A model for transforming practice. New York: National League for Nursing.
  • Colaizzi, RF. (1978). Psychological research as phenomenologists view it. Existential phenomenoiogical alternatives for psychology. New York: Oxford University Press.
  • Cook-Deegan, R.M., Mace, N-, Bailey, M.A., Chaukin, D., & Hawes, C. (1988). Confronting Alzheimer's disease and other dementias. Science Information Resource Center, Philadelphia: J.B. Lippincott.
  • Dawson, P., Kline, K., Wiancko, D.C., & Wells, D. (1986). Preventing excess disability in patients with Alzheimer's disease. Geriatric Nursing, (Nov./Dec.) 298-301.
  • Given, C., Collins, C.E., & Given, B. (1988). Sources of stress among families caring for relatives with Alzheimer's disease. Nursing Clinics of North America, 23, 69-82.
  • Hoch, C.C., Reynolds, C.E, Nebes, R.D., Kupper, D.J., Berman, S.R., & Campbell, D. (1989). Clinical significance of sleep disordered breathing in Alzheimer's disease. Journal of American Geriatrics Society, 37, 138-144.
  • Johnson, C.L., & Catalano, DJ. (1983). A longitudinal study of family support to impaired elderly. Gerontologist, 23, 614-618.
  • Kuhlman, G., Wilson, H., Hutchinson, S., & Wallhagen, M. (1991). Alzheimer's disease and family caregiving: Critical synthesis of the literature and research agenda. Nursing Research, 40, 331-337.
  • Kvale, J.N. (1986). Alzheimer's disease. American Family Physician, 34, 103-110.
  • Mayeroff, M. (1971). On caring. New York: Harper and Row.
  • Rabins, P.V., Mace, N.C., & Lucas, MJ. (1982). The impact of dementia on the family. The Journal of the American Medical Association, 248, 333-335.
  • Sayles-Cross, S. (1993). Perceptions of familial caregivers of elder adults. Image: The Journal of Nursing Scholarship, 25, 88-92.
  • Wilhoite, C., & Buschmann, M.B. (1991). Alzheimer's disease: Diary of a caregiver. Nursing Forum, 22(2), 17-22.
  • Wilson, H.S. (1989a). Family caregivers: The experience of Alzheimer's disease. Applied Nursing Research, 2(1), 40-45.
  • Wilson, H.S. (1989b). Family caregiving for a relative with Alzheimer's dementia: Coping with negative choices. Nursing Research, 38(2), 94-98.

FIGURE 1

Selected Examples of Statements and Meanings

FIGURE 2

Examples of IWo Theme Clusters With Their Subsumed formulated Meanings

10.3928/0098-9134-19950501-05

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