The Experience of Bereavement in Caregivers of Family Members With Alzheimer’s Disease Patricia S. Jones, Ida M. Martinson
This paper reports an analysis of the bereavement experience described by 13 caregivers of family members with Alzheimer’s disease. Utilizing the constant comparative method, four patterns of experience and two major concepts describingberea vement were identified. Two stages of berea vement are described: The first during caregiving and the second following the death of the family member. Findings support the need for professional intervention for caregivers during the caregiving period, which may also be a time of intense bereavement.
* arly studies of grief and bereavement indicated that grief reactions should be completed within weeks of the death of a loved one (Lindemann, 1944). Later, Ramsay (1979) and Mawson, Marks, Ramm, and Stem ( 1981) proposed a longer period -up to one year -for the resolution of grief. The Institute of Medicine’s Committee for the Study of Health Consequences of the Stress of Bereavement (Osterweis, Solomon & Green, 1984) noted, that for some individuals, the pain of loss may continue for a lifetime. Predictors of the intensity and length of bereavement include anticipatory grief, the nature and length of the illness and the amount of caregiver strain prior to death of a relative (Bass & Bowman, 1990; Gerber, 1974; Rando, 1983; Sanders, 1982). Several authors have examined anticipatory grief - grief that occurs prior to a loss -in relation to the grief experienced when the actual loss occurs (Aldrich, 1974; Fulton 8z Fulton, 1971; Lindemann, 1944). Some studies suggest that anticipatory grief facilitates acceptance and adjustment during the bereavement period (Atchley, Cohen & Weinstein, 1974; Weisman, 1974), and that a sudden or unexpected death of a family member is associated with greater psychiatric morbidity than death following a prolonged illness (Ball, 1977; Lundin, 1984). Others disagree, however. Sanders (1982), for example, found no significant differences between the reactions to sudden death and to death following a long chronic illness. Gerber (1975) and Rando (1983) found that an extended terminal illness was related to poor post-death adjustment. Bass and Bowman (1990) reported difficulty with bereavement following high levels of strain during caregiving. McClowry, Davies, May, Kulencamp & Martinson (1987) reported an “empty space” phenomenon in family members 172
*
* who experienced the death of a child from cancer. Individuals described this as a feeling of emptiness following the death, which continued to surface repeatedly long after. Attempts to cope with the emptiness included three main patterns: Getting over it, filling the emptiness and keeping the connection. The Occurrence of the empty space has been observed in other groups, too, but not yet reported in the literature. Based on the view that bereavement in caregivers of dementia victims is unique, Wasow and Coon (1987) interviewed widows and widowers of patients with dementia to identify difficulties and emotions experienced following the death of a spouse, and to identify patterns of coping and stages of recovery from the caregiving experience. No patterns of coping or stages of recovery were identified. Although the authors concluded that it is not possible to generalize about the recovery process in these caregivers, they maintained that bereavement following the loss of a spouse from dementia may be more complicated and more difficult than other bereavement situations. Recognizing that circumstances influence the grief experience, the Institute of Medicine’s Committee for the Study of Health Consequences of the Stress of Bereavement (Osterweis, Solomon & Green, 1984) recommended studies of bereavement related to various conditions of death. Still, very little is known about the bereavement experience of caregivers of Alzheimer’s victims. Patricia S. Jones, RN, PhD, Gamma Alpha, is Professor, Adult and Aging Family Nursing at Lorna Linda University; Ida M. Martinson, RN, PhD, FAAN is Professor, Family Health Care Nursing, University of CaliforniaSan Francisco. Correspondence to Prof. Jones, School of Nursing, Lorna Linda University, Loma Linda, CA 92350. Accepted for publication February 17, 1992. IMAGE: Journal of Nursing Scholarship
Methods Table 1: Caregher Demographic Idomation The investigationwas part of a larger study of coping and health in caregivers of family members with Alzheimer’sdisease. In that larger study a purposive sample of 30 caregivers, contacted through AD clinics and caregiver support groups in central California, were interviewed every six months over a two-year period. During this time nine of the family members with Alzheimer’s disease died. At the next scheduled interview these caregivers were invited to describe events associated with the death and the bereavement they experienced. Two of the nine caregivers chose not to be interviewed, saying they were depressed and wanted to forget the whole experience. The seven who agreed to a final interview were asked an open-ended question: “How was the death for you?’ The bereavement they reported appeared to be characteristicof caregiversof Alzheimer’s family members and related to their caregiving experience. To validate this observation the investigation was extended, with renewal of the human subjects consent, to examine the experience of caregivers whose family member died after the initial two-year study ended. By 18 months after the initial two-year study was completed, eight more family members had died. One elderly caregiver whose husband had recently passed away was in poor health and currently hospitalized. This caregiver was not requested to participate in the study. The other seven caregivers agreed to an interview for the purpose of describing their grief experience. In keeping with grounded theory methodology,interviews with the last seven caregivers constituted a theoretical sampling of indicators in the data from the first seven. For these interviews, a semi-structured interview guide was developed based on the indicators observed in the first set of interviews. In addition to the original question, “How was the death for you?,” questions now included: “Were you ready to let go?’ “Was there a sense of relief when your family member died?’ “Did you feel an empty space?’ and “What are the memories of your family memberbefore or after the illness?’ In total, 14 caregivers were interviewed regarding their bereavement experience, seven during the initial two-year study and seven 18 months later. Nine of the 14 caregivers were females -four daughters and five wives. Five were male -two sons and three husbands. One caregiver, an elderly husband, could not focus on the interview questions or talk coherently about his bereavement experience. He was therefore omitted from the analysis. Consequently, thirteen caregivers made up the total sample, nine females and four males, ranging in age from 38 to 76. The family members they had cared for died at ages ranging from 61 to 84 years, and the length of time that caregivers provided care ranged from three to 10 years. Time between the death of the family member and the interview ranged from one to twenty months. Eighty-five percent of the sample were interviewed within twelve months of the death, and 54 percent within 6 months. (See Table 1.)
The 13 audio-taped interviews were transcribed,validated with Volume 24, Number 3, Fall 1992
r i since
prriodof
fi*.
WvinS
U&t&mhlp
Death
Wife
67
wife
68
7 years 8 years
wife wife
75 78
6 yeas 4 years
1 month 12 months 6monthS 1 month
Wifk ..
M 61
6 wars
12months
10 years
-
I _
78
8wn
Daughter
53 39
loyears loyears
20mths 9 months 12 months 2 months
Daughm
42
4 years
l l d s
Daushler
38 50
5 years
4 months
5 years 3 years
6 m o n t h 7 3manthi-
Husband Husband Daylhaw
son son
1
I
I
I
52
I
the recordings for accuracy, and analyzed using the grounded theory methodology of Anselm Strauss. This approach is based on an indicator-conceptmodel (Strauss, 1987).Indicators are the actual events, actions or words present in the data; concepts are derived or abstracted from these indicators. Abstraction of concepts involves constant comparison - comparing back and forth between and among indicators, looking for similarities and differences and asking questions to probe the nature of the concepts. This process represents open, axial and selective coding which first identifies provisional concepts, examines contextual conditions, strategies and consequences, and then selects core concepts (Strauss, 1987). The following indicators contained in the interview data were selected as significantly descriptive of the bereavement experienced by these caregivers: 1. I couldn’t cry (23 percent of caregivers). 2. I mourned for months before she died (39 percent). 3. I was ready to let him go (77 percent). 4. The death was a relief (77 percent). 5. There was grief, but it was different (23 percent). 6. I was ready to get on with life (31 percent). 7. I kept praying that he would die (23 percent). 8. The death was a relief, but I felt guilty (31 percent).
Four patterns of experience were identified by delineating core indicators and contextual conditions for each. Intense Grief During Caregiving
Reports of crying, intense sadness and grief duringthe caregiving period were common. This was particularly true of caregivers whose family member had not recognized them for some time, who had not responded to affection and with whom meaningful communication had no longer been possible. “I couldn’t cry much afterwards. I’d cried my heart out before,” one daughter reported. “I mourned for months before mother died,” another said. Seven caregivers (54 percent) said the period of greatest grief was during the caregiving period. “It was a continual grieving,” said one, “because when you think there is nothing left to lose, you lose a little more.” Part of the grief seemed to be related to “saying goodbye for a long time,” or “not being able to properly say goodbye.” 173
The Experience of Bereavement in Caregivers ofFamily Members With Alzheimer’s Disease
Readiness to Let Go
After what seemed like a 10-year funeral, many caregivers felt ready for their family member to be taken from them completely. Many verbalized a readiness to let go, even though it was an ambivalent feeling -“wanting to hold on and wanting to let go.” This readiness varied depending on the quality of life of the family member, how long the caregiver had been caring for the family member and whether the patient verbalized not wanting to live -giving up rather than holding on to life. “I was ready to let him go when I saw that he wasn’t fighting anymore,” said one wife. “I wanted him to be able to die,” said another. Seeing their relative steadily lose dignity and quality of life was so difficult to accept that some prayed their family member would die. One daughter said poignantly, “Mother felt worthless. It broke my heart to see her that way -no dignity at all...I wanted to take her out, like the Indians did, to a beautiful, high mountain top and say ‘This is a good day to die.”’ The Death was a Relief
The daily challenge of providing care to a child-like adult had been both physically and emotionally exhausting for most caregivers, particularly those who were elderly spouses. Often, after the family member died, relief was obvious and natural. Different types of relief were experienced, however, and ambivalence was certainly present. Clear relief characterized the bereavement experience more often in caregivers who felt comfortable with decisions made and care given during the illness of the family member. It was particularly evident among those who managed to continue providing care for the relative at home until the death. One son described the grief experience following the death of his mother as difficult because of the relief. “The death was very difficult,” he said, “for more than one reason. Because of the loss and because of your mixed emotions -relief and guilt.” Feeling relieved about the death seemed wrong and added to his distress during bereavement. Others reported feeling relieved but guilty for having expressed anger and frustration during difficult moments of caregiving, and for feeling bitter that the disease had robbed them and their family member of enjoyable years together. Ready to Get on With Life
A number of caregivers indicated that once it was all over what they needed most was help and encouragement to get on with life. “I found that my grief had been over such a long period of time that I was much more ready to have a somewhat different type of [hospice]program. Like, what do we do to get on with life.” This response occurred more frequently among caregivers who reported extensive grief during the deterioration and loss of personhood in their family member, and among those who were basically satisfied with the care they had given. It was also noted in individuals who experienced sorrowful relief following the death of their family member and who attempted to resolve their grief by returning to work or establishing new relationships. Bereavement Conceptualizations
Further coding of the indicators and their contextual conditions led to the development of two major concepts that help depict the 174
experience of bereavement in caregivers of family members with Alzheimer’s disease. Open and selective coding guided the process of conceptualization. Axial coding probed the properties (contexts, strategies and consequences) of the concepts and examined their interrelationships. The Process of Detachment
The irreversible deterioration associated with Alzheimer’s disease places a caregiver in the agonizing position of seeing a relative lose independence, personhood and human dignity inch by inch. This series of losses often initiates prolonged grieving in the caregiver associated with feelings of a gradual but uncontrollable process of separation and detachment. The fading of the former self of the family member forces the caregiver to experience this painful process described by some as “saying goodbye for a long time.” Strong feelings of powerlessness and ambivalence, wanting to hold on and wanting to let go, were reported. A number of factors influenced the detachment process. The nature of the relationship between caregiver and family member prior to the onset of Alzheimer’s disease and whether or not the individual could still respond to caring and affectionate behaviors were two. One caregiver said that in spite of a very close relationship with his wife before the illness, he developed a crust in order to cope with the frustration of relating to her with Alzheimer’s disease. This same caregiver also reported difficulty putting it all behind him and getting on with life following his wife’s death. The process of detachment became so exhausting and agonizing that some caregivers prayed their family member would die. Nevertheless, when the death finally occurred, a brief period of intense grief usually ensued. Death was the final act of separation in the painful process of detachment. Complex Relief
A sense of relief associated with the death of the family member was frequently reported. However, this relief was often mixed with other feelings such as ambivalence, sorrow or guilt; and caregivers often had to resolve conflicts before full relief was possible. Further analysis revealed a phenomenon of complex relief which occurred primarily in three different patterns: Sorrowful relief, guilty relief, and grateful relief. Sorrowful Relief: Genuine relief accompanied by SOKOW and grief that were not resolved quickly characterized the experience of some caregivers. For example, caregivers of family members who still responded to affection and with whom some meaningful communication was still possible experienced less detachment prior to the death. Therefore, for these caregivers the grieving process was less complete before the death than for other caregivers. Sorrowful relief was also experienced by those who had difficulty moving beyond painful recent memories of their relative with the disease to pleasant earlier memories. This group took longer to regain a sense of control and get on with life. Guilty Relief: For some caregivers, relief was tinged with feelings of guilt that stemmed from various sources. Some felt guilty simply for feeling relieved by the death of their family member. Others felt guilty about decisions made during the caregiving period, especially the decision to institutionalize the IMAGE: Journal of Nursing Scholarship
The Experience of Bereavement in Caregivers of Family Members With Alzheimer’s Disease
family member, or for having expressed anger and frustration when the going was tough. Caregivers who had managed to keep their family member at home until the end were less likely to have feelings of guilt. Grateful Relie$ Caregivers who had lost all meaningful communication with their family member, who had grieved a lot already, and who had few regrets about the care they had given were likely to report relief without guilt or lingering sorrow. This is not to imply that there was no sorrow associated with the death. Almost all caregivers experiencedat least a short period of grief following the death of their relative. However, this group resolved their grief quickly, were grateful the caregiving experience was over, and ready to get on with their lives.
panied by intense grief. Caregivers attempt to cope with this grief and the ongoing demands of caregiving in different ways, with outcomes of exhaustion, depression, satisfaction and, for some, guilt. In the second stage of grief, following the physical death of the person, caregivers experience an immediate period of acute grief as the empty space suddenly enlarges. This time, however, the grief is accompanied by complex feelings of relief that require reflection and resolution. Caregivers also attempt to fill the empty space and reconstruct their lives. With effort they work past the painful memories, try to resolve any remaining guilt to feel satisfied with the care they provided, and get on with life. Although occasional recurrences of the empty space and guilt may continue, full relief and recovery are now possible.
Stages of Bereavement
Discussion
When the bereavement phenomena observed in this group of caregivers were examined using Strauss’ coding paradigm (Strauss, 1987),a pattern of bereavement was observed that can be described as occurring in two stages, as shown in Figure 1. In Stage One, the diagnosis of Alzheimer’s disease alone can initiate grief, portending not only death but a “10-year funeral.” As deterioration robs the family member of dignity, intellect and personhood, feelings of loss and powerlessness ensue, an empty space begins to develop, and the caregiver is forced to let go of a relationship “inch by inch.” This experience, conceptualized as the process of detachment, is characterizedby a prolonged series of agonizing losses accom-
This study has described the intense bereavement experienced by caregivers of family members with Alzheimer’s disease occumng in two stages: during the caregiving period and following the death of the family member. All caregivers in the study reported feeling an empty space even if the death of the family member was followed by grateful relief, or the process of detachment was almost complete by the time of death and they were ready to let go. One daughter who had prayed earnestly that her mother would die said: “There is a ‘mama-shaped hole’ in my heart that will always be there.” Although some of the grief experienced during the caregiving period might be anticipatory in nature, the emotions observed in these caregivers appear to have been not anticipatory grief, but acute grief related to immediate and permanentloss of a relative’s human abilities and personhood while still living. These findings neither support nor refute the phenomenon of anticipatory grief described by Lindemann (19M), Fulton and Fulton (197 l), and Aldrich (1974). Rather, the findings suggest the possibility of a different phenomenon that might help to explain the bereavement experience of caregivers and families of dementia patients. That is the phenomenon of “dual dying.” In spite of the potential for wholeness in human beings, their multidimensional nature makes it possible for an individual to lose competence in one dimension while remaining strong and competent in others. With dementia, wholeness is seriously threatened as deterioration of the intellectual and social dimensions progresses. This loss of social and intellectual qualities of individuals in the presence of continued physical health can generate conflicting emotions in caregiving family members and trigger acute grief. Grieving that is associated with a dual-dying trajectory, therefore, may begin early during the caregiving experience, become intense before the physical death actually occurs and create agonizing emotional dissonance. The combination of bereavement with the stress of providing care during the caregiving period can have significanteffects on the health of caregivers and on the recovery process following death of the family member. Therefore, early recognition of bereavement during caregiving and appropriate intervention by professionals are essential in maintaining the health of family caregivers and supporting family caregiving. @Z&
Stage 1:Durimg Cuegiving Diagnosis+ Deterioratton
Intensecaregiving
Powerlessnessand Loss Insulateoneself
I L
ProcessoiDetachment
II
killdie
Saiisiaction
’
I
Stage 2: After the Death
II
Stratvies
Reflect on care given Work past recent memories to before illnesr Fill the empty space b. relurn hi emplo)mrnt
Resolutionofguilt Satisfaction Get on with liie
empty space
facc.wd Figure 1: Stages of Alzheimer’s Caregiver Bereavement Volume 24, Number 3, Fall 1992
175
The Experience of Bereavement in Caregivers of Family Members With Alzheimer's Disease
~
References Aldrich, C. K. (1974). Some dynamics of anticipatory grief. In A. C. Cam, A. H. Kutscher & B. Schoenberg (Eds.), Anticipatory grief, 3-9, New York Columbia University Press. Atchley, M. W., Cohen, S. B. & Weinstein, L. (1974). Anticipatory grief in a cancer hospital. In A. C. Carr, A. H. Kutscher & B. Schoenberg (Eds.), Anticipatory grief, 124-134,New York Columbia University Press. Ball, J. F. (1977).Widow's grief The impact of age and mode of death. Omega, 7, 307-333. Bass, D. M. & Bowman, K. (1990).The transition from caregiving to bereavement: The relationship of care-related strain and adjustment to death. The Gerontologist, 30(1), 35-42. Fulton, R. & Fulton, J. A. (1971). A psychosocial aspect of terminal care: Anticipatory grief. Omega, 2,91-100. Gerber, I. (1974). Anticipatory bereavement. In A. C. Carr, A. H. Kutscher & B. Schoenberg (Eds.), Anticipatory grief, 26-30, New York: Columbia University Press. Gerber, I., Rusalem, R., Hannon, N., Battin, D. & Arkin, A. (1975). Anticipatory grief and aged widows and widowers. Journal of Gerontology 30, 225-229. Lindemann, E. (1944). Symptomatology and management of acute grief. American Journal of Psychiatry, 101,141-149.
Lundin, T. (1984). Long-term outcome of bereavement. British Journal of Psychiatry, 145,424-428. Mawson,D.,Marks,I.,Ramm,L. & Stern,R. (1981). Guidedmoumingformorbid grief: A controlled study. British Journal of Psychiatry, 138,185-193. McCIowry, S. G.,Davies,E. B., May, K. A., Kulenkamp,E. J. & Martinson, I. M. (1987). The empty space phenomenon: The process of grief in the bereaved family. Death Studie~11,361-374. Osterweis,M.,Solomon,F. & Green,M. (Eds.). (1984).Bereavement: Reactions, consequences and care. Washington, DC:National Academy Press. Ramsay, R W. (1979). Bereavement: A behavioral treatment of pathological grief. In P.0.Sjoden, S. Bates & W. S. Dorkens,III(Eds.), Trends in behavior therapy, 217-248, New York Academic Press. Rando, T. A. (1983). An investigation of grief and adaptation in parents whose children have died from cancer. Journal of Pediatric Psychology 8,3-20. Sanders, C. M. (1982). Effects of sudden vs. chronic illness death on bereavement outcome. Omega: Journal of Death and Dying, 13,227-241. Straws, A. L. (1987). Qualitative analysis for social scientists. New York Cambridge University Press. Wasow, M. & Coon, D. H. (1987). Widows and widowers of Alzheimer's victims: Their survival after spouses' death. Journal of Independent Social Work, 2(2), 21-32. Weisman, A. D. (1974). Is mourning necessary? In A. C. Carr, A. H. Kutscher and B. Schoenberg (Eds.) Anticipatory grief, 14-18, New York Columbia University Press.
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913171 Participation o f Sursing Facult! i n Univertit) (hvcrnke Rahrttwy. Aitla A. J N u n Ed,3 l : 3 , Mar 9 2 pp 1 0 7 - 1 2 This investigation examined actual and ideal Ic.vcl\ o f nursing faculty participaion i n academic. \tu&nt. peruinnel. public. and financial affairs. A survey of nuning faculty sugpestcd that they were involved rubstantirllly i n academic affairs. hut less i n other areas of govrmancc.. The faculty indicated with satisfaction this and with their lesser pariripatiori in student. personnel. and puhlic a!fairs. Dissatisfaction with their low level o f partic ipcition in finances was i ~ t e d
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This paper reports an analysis of the bereavement experience described by 13 caregivers of family members with Alzheimer’s disease. Utilizing the constant comparative method, four patterns of experience and two major concepts describingberea vement were identified. Two stages of berea vement are described: The first during caregiving and the second following the death of the family member. Findings support the need for professional intervention for caregivers during the caregiving period, which may also be a time of intense bereavement.
* arly studies of grief and bereavement indicated that grief reactions should be completed within weeks of the death of a loved one (Lindemann, 1944). Later, Ramsay (1979) and Mawson, Marks, Ramm, and Stem ( 1981) proposed a longer period -up to one year -for the resolution of grief. The Institute of Medicine’s Committee for the Study of Health Consequences of the Stress of Bereavement (Osterweis, Solomon & Green, 1984) noted, that for some individuals, the pain of loss may continue for a lifetime. Predictors of the intensity and length of bereavement include anticipatory grief, the nature and length of the illness and the amount of caregiver strain prior to death of a relative (Bass & Bowman, 1990; Gerber, 1974; Rando, 1983; Sanders, 1982). Several authors have examined anticipatory grief - grief that occurs prior to a loss -in relation to the grief experienced when the actual loss occurs (Aldrich, 1974; Fulton 8z Fulton, 1971; Lindemann, 1944). Some studies suggest that anticipatory grief facilitates acceptance and adjustment during the bereavement period (Atchley, Cohen & Weinstein, 1974; Weisman, 1974), and that a sudden or unexpected death of a family member is associated with greater psychiatric morbidity than death following a prolonged illness (Ball, 1977; Lundin, 1984). Others disagree, however. Sanders (1982), for example, found no significant differences between the reactions to sudden death and to death following a long chronic illness. Gerber (1975) and Rando (1983) found that an extended terminal illness was related to poor post-death adjustment. Bass and Bowman (1990) reported difficulty with bereavement following high levels of strain during caregiving. McClowry, Davies, May, Kulencamp & Martinson (1987) reported an “empty space” phenomenon in family members 172
*
* who experienced the death of a child from cancer. Individuals described this as a feeling of emptiness following the death, which continued to surface repeatedly long after. Attempts to cope with the emptiness included three main patterns: Getting over it, filling the emptiness and keeping the connection. The Occurrence of the empty space has been observed in other groups, too, but not yet reported in the literature. Based on the view that bereavement in caregivers of dementia victims is unique, Wasow and Coon (1987) interviewed widows and widowers of patients with dementia to identify difficulties and emotions experienced following the death of a spouse, and to identify patterns of coping and stages of recovery from the caregiving experience. No patterns of coping or stages of recovery were identified. Although the authors concluded that it is not possible to generalize about the recovery process in these caregivers, they maintained that bereavement following the loss of a spouse from dementia may be more complicated and more difficult than other bereavement situations. Recognizing that circumstances influence the grief experience, the Institute of Medicine’s Committee for the Study of Health Consequences of the Stress of Bereavement (Osterweis, Solomon & Green, 1984) recommended studies of bereavement related to various conditions of death. Still, very little is known about the bereavement experience of caregivers of Alzheimer’s victims. Patricia S. Jones, RN, PhD, Gamma Alpha, is Professor, Adult and Aging Family Nursing at Lorna Linda University; Ida M. Martinson, RN, PhD, FAAN is Professor, Family Health Care Nursing, University of CaliforniaSan Francisco. Correspondence to Prof. Jones, School of Nursing, Lorna Linda University, Loma Linda, CA 92350. Accepted for publication February 17, 1992. IMAGE: Journal of Nursing Scholarship
Methods Table 1: Caregher Demographic Idomation The investigationwas part of a larger study of coping and health in caregivers of family members with Alzheimer’sdisease. In that larger study a purposive sample of 30 caregivers, contacted through AD clinics and caregiver support groups in central California, were interviewed every six months over a two-year period. During this time nine of the family members with Alzheimer’s disease died. At the next scheduled interview these caregivers were invited to describe events associated with the death and the bereavement they experienced. Two of the nine caregivers chose not to be interviewed, saying they were depressed and wanted to forget the whole experience. The seven who agreed to a final interview were asked an open-ended question: “How was the death for you?’ The bereavement they reported appeared to be characteristicof caregiversof Alzheimer’s family members and related to their caregiving experience. To validate this observation the investigation was extended, with renewal of the human subjects consent, to examine the experience of caregivers whose family member died after the initial two-year study ended. By 18 months after the initial two-year study was completed, eight more family members had died. One elderly caregiver whose husband had recently passed away was in poor health and currently hospitalized. This caregiver was not requested to participate in the study. The other seven caregivers agreed to an interview for the purpose of describing their grief experience. In keeping with grounded theory methodology,interviews with the last seven caregivers constituted a theoretical sampling of indicators in the data from the first seven. For these interviews, a semi-structured interview guide was developed based on the indicators observed in the first set of interviews. In addition to the original question, “How was the death for you?,” questions now included: “Were you ready to let go?’ “Was there a sense of relief when your family member died?’ “Did you feel an empty space?’ and “What are the memories of your family memberbefore or after the illness?’ In total, 14 caregivers were interviewed regarding their bereavement experience, seven during the initial two-year study and seven 18 months later. Nine of the 14 caregivers were females -four daughters and five wives. Five were male -two sons and three husbands. One caregiver, an elderly husband, could not focus on the interview questions or talk coherently about his bereavement experience. He was therefore omitted from the analysis. Consequently, thirteen caregivers made up the total sample, nine females and four males, ranging in age from 38 to 76. The family members they had cared for died at ages ranging from 61 to 84 years, and the length of time that caregivers provided care ranged from three to 10 years. Time between the death of the family member and the interview ranged from one to twenty months. Eighty-five percent of the sample were interviewed within twelve months of the death, and 54 percent within 6 months. (See Table 1.)
The 13 audio-taped interviews were transcribed,validated with Volume 24, Number 3, Fall 1992
r i since
prriodof
fi*.
WvinS
U&t&mhlp
Death
Wife
67
wife
68
7 years 8 years
wife wife
75 78
6 yeas 4 years
1 month 12 months 6monthS 1 month
Wifk ..
M 61
6 wars
12months
10 years
-
I _
78
8wn
Daughter
53 39
loyears loyears
20mths 9 months 12 months 2 months
Daughm
42
4 years
l l d s
Daushler
38 50
5 years
4 months
5 years 3 years
6 m o n t h 7 3manthi-
Husband Husband Daylhaw
son son
1
I
I
I
52
I
the recordings for accuracy, and analyzed using the grounded theory methodology of Anselm Strauss. This approach is based on an indicator-conceptmodel (Strauss, 1987).Indicators are the actual events, actions or words present in the data; concepts are derived or abstracted from these indicators. Abstraction of concepts involves constant comparison - comparing back and forth between and among indicators, looking for similarities and differences and asking questions to probe the nature of the concepts. This process represents open, axial and selective coding which first identifies provisional concepts, examines contextual conditions, strategies and consequences, and then selects core concepts (Strauss, 1987). The following indicators contained in the interview data were selected as significantly descriptive of the bereavement experienced by these caregivers: 1. I couldn’t cry (23 percent of caregivers). 2. I mourned for months before she died (39 percent). 3. I was ready to let him go (77 percent). 4. The death was a relief (77 percent). 5. There was grief, but it was different (23 percent). 6. I was ready to get on with life (31 percent). 7. I kept praying that he would die (23 percent). 8. The death was a relief, but I felt guilty (31 percent).
Four patterns of experience were identified by delineating core indicators and contextual conditions for each. Intense Grief During Caregiving
Reports of crying, intense sadness and grief duringthe caregiving period were common. This was particularly true of caregivers whose family member had not recognized them for some time, who had not responded to affection and with whom meaningful communication had no longer been possible. “I couldn’t cry much afterwards. I’d cried my heart out before,” one daughter reported. “I mourned for months before mother died,” another said. Seven caregivers (54 percent) said the period of greatest grief was during the caregiving period. “It was a continual grieving,” said one, “because when you think there is nothing left to lose, you lose a little more.” Part of the grief seemed to be related to “saying goodbye for a long time,” or “not being able to properly say goodbye.” 173
The Experience of Bereavement in Caregivers ofFamily Members With Alzheimer’s Disease
Readiness to Let Go
After what seemed like a 10-year funeral, many caregivers felt ready for their family member to be taken from them completely. Many verbalized a readiness to let go, even though it was an ambivalent feeling -“wanting to hold on and wanting to let go.” This readiness varied depending on the quality of life of the family member, how long the caregiver had been caring for the family member and whether the patient verbalized not wanting to live -giving up rather than holding on to life. “I was ready to let him go when I saw that he wasn’t fighting anymore,” said one wife. “I wanted him to be able to die,” said another. Seeing their relative steadily lose dignity and quality of life was so difficult to accept that some prayed their family member would die. One daughter said poignantly, “Mother felt worthless. It broke my heart to see her that way -no dignity at all...I wanted to take her out, like the Indians did, to a beautiful, high mountain top and say ‘This is a good day to die.”’ The Death was a Relief
The daily challenge of providing care to a child-like adult had been both physically and emotionally exhausting for most caregivers, particularly those who were elderly spouses. Often, after the family member died, relief was obvious and natural. Different types of relief were experienced, however, and ambivalence was certainly present. Clear relief characterized the bereavement experience more often in caregivers who felt comfortable with decisions made and care given during the illness of the family member. It was particularly evident among those who managed to continue providing care for the relative at home until the death. One son described the grief experience following the death of his mother as difficult because of the relief. “The death was very difficult,” he said, “for more than one reason. Because of the loss and because of your mixed emotions -relief and guilt.” Feeling relieved about the death seemed wrong and added to his distress during bereavement. Others reported feeling relieved but guilty for having expressed anger and frustration during difficult moments of caregiving, and for feeling bitter that the disease had robbed them and their family member of enjoyable years together. Ready to Get on With Life
A number of caregivers indicated that once it was all over what they needed most was help and encouragement to get on with life. “I found that my grief had been over such a long period of time that I was much more ready to have a somewhat different type of [hospice]program. Like, what do we do to get on with life.” This response occurred more frequently among caregivers who reported extensive grief during the deterioration and loss of personhood in their family member, and among those who were basically satisfied with the care they had given. It was also noted in individuals who experienced sorrowful relief following the death of their family member and who attempted to resolve their grief by returning to work or establishing new relationships. Bereavement Conceptualizations
Further coding of the indicators and their contextual conditions led to the development of two major concepts that help depict the 174
experience of bereavement in caregivers of family members with Alzheimer’s disease. Open and selective coding guided the process of conceptualization. Axial coding probed the properties (contexts, strategies and consequences) of the concepts and examined their interrelationships. The Process of Detachment
The irreversible deterioration associated with Alzheimer’s disease places a caregiver in the agonizing position of seeing a relative lose independence, personhood and human dignity inch by inch. This series of losses often initiates prolonged grieving in the caregiver associated with feelings of a gradual but uncontrollable process of separation and detachment. The fading of the former self of the family member forces the caregiver to experience this painful process described by some as “saying goodbye for a long time.” Strong feelings of powerlessness and ambivalence, wanting to hold on and wanting to let go, were reported. A number of factors influenced the detachment process. The nature of the relationship between caregiver and family member prior to the onset of Alzheimer’s disease and whether or not the individual could still respond to caring and affectionate behaviors were two. One caregiver said that in spite of a very close relationship with his wife before the illness, he developed a crust in order to cope with the frustration of relating to her with Alzheimer’s disease. This same caregiver also reported difficulty putting it all behind him and getting on with life following his wife’s death. The process of detachment became so exhausting and agonizing that some caregivers prayed their family member would die. Nevertheless, when the death finally occurred, a brief period of intense grief usually ensued. Death was the final act of separation in the painful process of detachment. Complex Relief
A sense of relief associated with the death of the family member was frequently reported. However, this relief was often mixed with other feelings such as ambivalence, sorrow or guilt; and caregivers often had to resolve conflicts before full relief was possible. Further analysis revealed a phenomenon of complex relief which occurred primarily in three different patterns: Sorrowful relief, guilty relief, and grateful relief. Sorrowful Relief: Genuine relief accompanied by SOKOW and grief that were not resolved quickly characterized the experience of some caregivers. For example, caregivers of family members who still responded to affection and with whom some meaningful communication was still possible experienced less detachment prior to the death. Therefore, for these caregivers the grieving process was less complete before the death than for other caregivers. Sorrowful relief was also experienced by those who had difficulty moving beyond painful recent memories of their relative with the disease to pleasant earlier memories. This group took longer to regain a sense of control and get on with life. Guilty Relief: For some caregivers, relief was tinged with feelings of guilt that stemmed from various sources. Some felt guilty simply for feeling relieved by the death of their family member. Others felt guilty about decisions made during the caregiving period, especially the decision to institutionalize the IMAGE: Journal of Nursing Scholarship
The Experience of Bereavement in Caregivers of Family Members With Alzheimer’s Disease
family member, or for having expressed anger and frustration when the going was tough. Caregivers who had managed to keep their family member at home until the end were less likely to have feelings of guilt. Grateful Relie$ Caregivers who had lost all meaningful communication with their family member, who had grieved a lot already, and who had few regrets about the care they had given were likely to report relief without guilt or lingering sorrow. This is not to imply that there was no sorrow associated with the death. Almost all caregivers experiencedat least a short period of grief following the death of their relative. However, this group resolved their grief quickly, were grateful the caregiving experience was over, and ready to get on with their lives.
panied by intense grief. Caregivers attempt to cope with this grief and the ongoing demands of caregiving in different ways, with outcomes of exhaustion, depression, satisfaction and, for some, guilt. In the second stage of grief, following the physical death of the person, caregivers experience an immediate period of acute grief as the empty space suddenly enlarges. This time, however, the grief is accompanied by complex feelings of relief that require reflection and resolution. Caregivers also attempt to fill the empty space and reconstruct their lives. With effort they work past the painful memories, try to resolve any remaining guilt to feel satisfied with the care they provided, and get on with life. Although occasional recurrences of the empty space and guilt may continue, full relief and recovery are now possible.
Stages of Bereavement
Discussion
When the bereavement phenomena observed in this group of caregivers were examined using Strauss’ coding paradigm (Strauss, 1987),a pattern of bereavement was observed that can be described as occurring in two stages, as shown in Figure 1. In Stage One, the diagnosis of Alzheimer’s disease alone can initiate grief, portending not only death but a “10-year funeral.” As deterioration robs the family member of dignity, intellect and personhood, feelings of loss and powerlessness ensue, an empty space begins to develop, and the caregiver is forced to let go of a relationship “inch by inch.” This experience, conceptualized as the process of detachment, is characterizedby a prolonged series of agonizing losses accom-
This study has described the intense bereavement experienced by caregivers of family members with Alzheimer’s disease occumng in two stages: during the caregiving period and following the death of the family member. All caregivers in the study reported feeling an empty space even if the death of the family member was followed by grateful relief, or the process of detachment was almost complete by the time of death and they were ready to let go. One daughter who had prayed earnestly that her mother would die said: “There is a ‘mama-shaped hole’ in my heart that will always be there.” Although some of the grief experienced during the caregiving period might be anticipatory in nature, the emotions observed in these caregivers appear to have been not anticipatory grief, but acute grief related to immediate and permanentloss of a relative’s human abilities and personhood while still living. These findings neither support nor refute the phenomenon of anticipatory grief described by Lindemann (19M), Fulton and Fulton (197 l), and Aldrich (1974). Rather, the findings suggest the possibility of a different phenomenon that might help to explain the bereavement experience of caregivers and families of dementia patients. That is the phenomenon of “dual dying.” In spite of the potential for wholeness in human beings, their multidimensional nature makes it possible for an individual to lose competence in one dimension while remaining strong and competent in others. With dementia, wholeness is seriously threatened as deterioration of the intellectual and social dimensions progresses. This loss of social and intellectual qualities of individuals in the presence of continued physical health can generate conflicting emotions in caregiving family members and trigger acute grief. Grieving that is associated with a dual-dying trajectory, therefore, may begin early during the caregiving experience, become intense before the physical death actually occurs and create agonizing emotional dissonance. The combination of bereavement with the stress of providing care during the caregiving period can have significanteffects on the health of caregivers and on the recovery process following death of the family member. Therefore, early recognition of bereavement during caregiving and appropriate intervention by professionals are essential in maintaining the health of family caregivers and supporting family caregiving. @Z&
Stage 1:Durimg Cuegiving Diagnosis+ Deterioratton
Intensecaregiving
Powerlessnessand Loss Insulateoneself
I L
ProcessoiDetachment
II
killdie
Saiisiaction
’
I
Stage 2: After the Death
II
Stratvies
Reflect on care given Work past recent memories to before illnesr Fill the empty space b. relurn hi emplo)mrnt
Resolutionofguilt Satisfaction Get on with liie
empty space
facc.wd Figure 1: Stages of Alzheimer’s Caregiver Bereavement Volume 24, Number 3, Fall 1992
175
The Experience of Bereavement in Caregivers of Family Members With Alzheimer's Disease
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References Aldrich, C. K. (1974). Some dynamics of anticipatory grief. In A. C. Cam, A. H. Kutscher & B. Schoenberg (Eds.), Anticipatory grief, 3-9, New York Columbia University Press. Atchley, M. W., Cohen, S. B. & Weinstein, L. (1974). Anticipatory grief in a cancer hospital. In A. C. Carr, A. H. Kutscher & B. Schoenberg (Eds.), Anticipatory grief, 124-134,New York Columbia University Press. Ball, J. F. (1977).Widow's grief The impact of age and mode of death. Omega, 7, 307-333. Bass, D. M. & Bowman, K. (1990).The transition from caregiving to bereavement: The relationship of care-related strain and adjustment to death. The Gerontologist, 30(1), 35-42. Fulton, R. & Fulton, J. A. (1971). A psychosocial aspect of terminal care: Anticipatory grief. Omega, 2,91-100. Gerber, I. (1974). Anticipatory bereavement. In A. C. Carr, A. H. Kutscher & B. Schoenberg (Eds.), Anticipatory grief, 26-30, New York: Columbia University Press. Gerber, I., Rusalem, R., Hannon, N., Battin, D. & Arkin, A. (1975). Anticipatory grief and aged widows and widowers. Journal of Gerontology 30, 225-229. Lindemann, E. (1944). Symptomatology and management of acute grief. American Journal of Psychiatry, 101,141-149.
Lundin, T. (1984). Long-term outcome of bereavement. British Journal of Psychiatry, 145,424-428. Mawson,D.,Marks,I.,Ramm,L. & Stern,R. (1981). Guidedmoumingformorbid grief: A controlled study. British Journal of Psychiatry, 138,185-193. McCIowry, S. G.,Davies,E. B., May, K. A., Kulenkamp,E. J. & Martinson, I. M. (1987). The empty space phenomenon: The process of grief in the bereaved family. Death Studie~11,361-374. Osterweis,M.,Solomon,F. & Green,M. (Eds.). (1984).Bereavement: Reactions, consequences and care. Washington, DC:National Academy Press. Ramsay, R W. (1979). Bereavement: A behavioral treatment of pathological grief. In P.0.Sjoden, S. Bates & W. S. Dorkens,III(Eds.), Trends in behavior therapy, 217-248, New York Academic Press. Rando, T. A. (1983). An investigation of grief and adaptation in parents whose children have died from cancer. Journal of Pediatric Psychology 8,3-20. Sanders, C. M. (1982). Effects of sudden vs. chronic illness death on bereavement outcome. Omega: Journal of Death and Dying, 13,227-241. Straws, A. L. (1987). Qualitative analysis for social scientists. New York Cambridge University Press. Wasow, M. & Coon, D. H. (1987). Widows and widowers of Alzheimer's victims: Their survival after spouses' death. Journal of Independent Social Work, 2(2), 21-32. Weisman, A. D. (1974). Is mourning necessary? In A. C. Carr, A. H. Kutscher and B. Schoenberg (Eds.) Anticipatory grief, 14-18, New York Columbia University Press.
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