Journal of Gerontological Nursing

MANAGING AMBIGUOUS LOSS in Dementia and Terminal Illness

Terri A Cutillo-Schmitter, MSN, RN, CS, AAFMT

Abstract

A universal family task centers on resolving losses threatening family solidarity. Loss such as death is definite; clearly tangible and visible. Other loss such as deterioration associated with terminal illness can be ambiguous; i.e., appearing less real because it is indefinite and less clear. Lingering, incurable illness, such as AlzheimeKs disease, is extremely painful and stressful for family members as they endure the progressive deterioration and eventual death of their loved one. In such cases, the essence of self, individual personality, ceases though the person physically remains alive (Dolca & Aber, 1989). Such an ambiguous loss may be more complicated for family members to grasp, and thereby begin to resolve. As a result, ambiguous loss may constrain relationships and hamper family connectedness and restructuring. This article encourages nurses to confront the reality of grief and isolation families undergoing ambiguous loss typically experience. Employing a systems perspective, it prescribes stress management strategies that nurses can utilize with families faced with ambiguous loss. In my own nursing practice, I attempt to help such families renew a sense of inner strength to cope more effectively with present circumstances and their future iourney together. My goal is to validate family members' grief while instilling hope that they can successfully manage the disease processes. To enable them to release grief and master developmental as well as caregiving tasks, my first step is to offer my presence, joining with them to support their getting in touch with the ambiguous nature of their loss. Following Walsh and McGoldrick's model (1991), I seek to foster healthy adaptation by facilitating two family tasks: 1 ) shared acknowledgment of the reality of the situation and shared experience of the loss; and 2) reorganization of the family unit and reinvestment in other relationships and life pursuits. To this end, I offer information and guidance, encouraging and coaching family members to share perceptions and explore beneficial solutions for meeting individual and collective needs. It is often difficult for families to accept the reality of psychological death when the person continues to be part of daily existence. Loss within the context of life does not allow space and time for emotional detachment, or pursuits outside the family. Often my role is more about "being with" and less about "doing far/ with the intent of fostering affectionate connections and competency among family members as they readjust to changing circumstances.

Abstract

A universal family task centers on resolving losses threatening family solidarity. Loss such as death is definite; clearly tangible and visible. Other loss such as deterioration associated with terminal illness can be ambiguous; i.e., appearing less real because it is indefinite and less clear. Lingering, incurable illness, such as AlzheimeKs disease, is extremely painful and stressful for family members as they endure the progressive deterioration and eventual death of their loved one. In such cases, the essence of self, individual personality, ceases though the person physically remains alive (Dolca & Aber, 1989). Such an ambiguous loss may be more complicated for family members to grasp, and thereby begin to resolve. As a result, ambiguous loss may constrain relationships and hamper family connectedness and restructuring. This article encourages nurses to confront the reality of grief and isolation families undergoing ambiguous loss typically experience. Employing a systems perspective, it prescribes stress management strategies that nurses can utilize with families faced with ambiguous loss. In my own nursing practice, I attempt to help such families renew a sense of inner strength to cope more effectively with present circumstances and their future iourney together. My goal is to validate family members' grief while instilling hope that they can successfully manage the disease processes. To enable them to release grief and master developmental as well as caregiving tasks, my first step is to offer my presence, joining with them to support their getting in touch with the ambiguous nature of their loss. Following Walsh and McGoldrick's model (1991), I seek to foster healthy adaptation by facilitating two family tasks: 1 ) shared acknowledgment of the reality of the situation and shared experience of the loss; and 2) reorganization of the family unit and reinvestment in other relationships and life pursuits. To this end, I offer information and guidance, encouraging and coaching family members to share perceptions and explore beneficial solutions for meeting individual and collective needs. It is often difficult for families to accept the reality of psychological death when the person continues to be part of daily existence. Loss within the context of life does not allow space and time for emotional detachment, or pursuits outside the family. Often my role is more about "being with" and less about "doing far/ with the intent of fostering affectionate connections and competency among family members as they readjust to changing circumstances.

Throughout the family life cycle members change and evolve as they move from one developmental stage to the next, readjusting to new needs and demands usually somewhat harmoniously, in continuous motion from past to future. However, losses such as death and terminal illness can disrupt family equilibrium, forcing change under painful circumstances. When loss occurs, certain possibilities, dreams, roles and relationships require revision as family members re-evaluate needs and resources in order to make effective changes affording family continuity (Walsh & McGoldrick, 1991). Some families need help to adapt and find ways to accommodate new functions brought about by the illness situation.

In our society, with clear loss, the bereaved family unit receives support from extended family, neighbors and friends. With their loss acknowledged within this larger personal community at funeral and memorial rituals, family survivors are given permission to mourn and thus move along in a grief resolution process.

However, with less apparent loss from a debilitating illness such as dementia or other progressively worsening chronic illness, research findings (Boss, 1991; Boss, Carón, & Horbal, 1988; Boss, Carón, Horbal, & Mortimer, 1990) show that little permission or validation for grieving is extended to family members. This is due to the lack of clarity about what is transpiring. To others, the person is physically present, the family unit appears to be intact. Yet in these cases the psychological presence of the stricken family member is absent. Nevertheless, the grief goes unacknowledged because our society lacks mourning rituals for unclear loss.

By the same token, even as the family witnesses heart-wrenching changes in a loved one's personality, cognitive, and social functioning, family members, confused by the ambiguity of the situation, may themselves be unaware of their need to grieve. The loved one is there, but not there in the ways that family members have come to know and love. For instance, a demented family member's initial cognitive decline reduces ability to manage daily routines, participate fully in family affairs, and sensitively attend to others' feelings. Not fully grasping the reality of the patient's decline and their consequential emotions, family members frequently become immobilized; unable to make necessary decisions and role changes as well as let go of past dreams and old patterns. Boss (1991) labels a family situation resulting from ambiguous loss, "boundary ambiguity," defined as "the family not knowing who is in and who is out of the system" (p. 165). Such lack of clarity about the new status of the afflicted member generates confusion and conflict, thereby hindering a family's capacity to reorganize adaptively. Reorganization is more readily negotiated when family roles and boundaries are somewhat clear, although flexible enough to enable the family to establish new mechanisms for stable restructuring and reaching new homeostasis.

It is healthy for family members to continue to have a relationship with their loved one while mourning that part of the relationship that is lost forever. Typically, however, according to Boss (1991), family members experiencing ambiguous loss attempt to adjust and reorganize by excluding their ill family member prematurely (i.e., discount a loved one as no longer being part of the family). Families must be helped "to deal with the loss of important aspects of their relationship without extruding the person as already dead" (Walsh & McGoldrick, 1991, p. 14). Often families struggle with the past in attempts to recapture, escape or forget it Rolland, 1991). Instead, they must be helped to claim the present and whatever future is left them (Minuchin & Nichols, 1993).

Families especially at risk for complications from ambiguous loss are those experiencing blocked communications; enmeshment or disengagement; feelings of shame, blame or guilt and those lacking social or economic resources (Shapiro, 1994). Assessing such risk factors, facilitating open communication, refraining destructive beliefs and mobilizing needed resources and support from a wider social network can benefit bereaved families.

Enmeshed families have a tendency to become over-involved; exclusively attentive to the ill member, neglecting self and others' needs within the family. Such overinvolvement infantilizes the ill member and often leads to caregiver burnout as well. The primary caregiver, avoiding other life pursuits, does more for the ill member before it becomes necessary, not readily permitting others to help with caregiving tasks when assistance is ultimately needed by the patient's disabilities. Frequently, such overinvolvement results in serious illness in the primary caregiver.

Disengaged families, on the other hand, have a tendency to minimize the extent of the illness, unrealisticalIy expecting the afflicted family member to assume usual family responsibilities. When deficits are ignored, the stricken member may be accused of irresponsibility or of "playing tricks" on the family. This misunderstanding of the illness often results in unsafe conditions for the dementia patient.

In cases of unclear loss, besides the stress arising from the ambiguous loss, family stress is further intensified and solidarity threatened by the uncertainty of the disease duration and outcome. In such prolonged, progressively worsening illness like dementia, where no clear cut progression of the disease exists, the family is thrust into a state of limbo (Rolland, 1991). When the length and prognosis of the illness remains unclear. Boss (1991) finds families have to learn to operate in a "gray zone." Under the brow of uncertainty, families must not only accept the possibility of further disability but must master new activities and roles once accomplished by the declining family member. Immobilization is more successfully avoided when family members, cognizant of their indefinite situation, learn to cope with the uncertainty.

Moreover, diseases involving a number of losses require new phases of adaptation at key illness transitions (Rolland, 1991). According to Rolland, the chronic or "long-term" phase fuels exhaustion and ambivalence as financial and emotional resources become depleted. He warns that anticipatory guidance about probable further disabilities must always include methods for handling the deficits, lest the family lose a sense of hope and control over their future.

Boss (1991) purports that sometimes, because of our own lack of clarity about ambiguous loss and the uncertainty of the disease's progression, we fail to give enough information to those involved in prolonged, worsening situations. At other times, families may not be ready to accept the diagnosis. Regardless, nurses, in dose contact with these families can play beneficial helping, coaching and educational roles in this culturally-unsupported life transition by identifying and supporting families experiencing ambiguous loss.

In our grief work with families, we need to anticipate a range of mourning stages, remembering certain individuals may not yet be in touch with their grief; realizing also that members of the same family may be at different phases. By taking the time to understand where each is, we will be better able to support and guide individuals. Expressions of shock, denial, anger, helplessness, guilt, sadness, and ambivalence are normal. Each family member is hurting, needing validation to mourn effectively. Nurses tolerant of diverse reactions can establish a climate of empathy and hope facilitating healing.

Once the nature and reality of loss are shared, a period of mourning can ensue, improving a family's ability to reorganize while maintaining optimal functioning for their ill member. For example, one daughter, experiencing extreme distress during a visit to her mother on our unit, painfully cried, "I want my mother back.. .you can't tell me she will not be the same as she has been.. .we've had 56 years enjoying each other's company and I want her back, the way she's always been." In such a case, greater clarity about the daughter's point of view afforded insight into what she needed to know about her mother's illness as well as how to present and pace information fostering the daughter's need to begin a healthy grieving process. In another situation, a three generation admission interview afforded movement toward family reorganization when the grandson expressed his difficulty in accepting the changes in his grandfather, his role model. Typically, someone less involved in primary caregiving is able to share grief more openly when three or four generations are brought together to discuss how each is affected by the changes generated by the illness. Members involved in secondary caregiving tasks are also frequently more objective, thereby affording more effective planning and problem-solving. In this case, the grandson's openness prompted his grandmother to express fears of loneliness and emptiness ahead should her husband be institutionalized. In turn, the patient, diagnosed with Pick's disease, then shared his feelings; sadness, over the burden his illness placed on his wife and fears of being unable to live without close family contact. Lastly, the patient's daughter expressed her sadness of losing a family decision-maker, a role her father had held in this patriarchal system. As a result of staff validation, family members, comprehending the ambiguity of their loss, were able to share their grief together. Over time, affording further opportunities for open expression and planning, they successfully participated with the team in creating mutually beneficial solutions for their family members.

I have incorporated into my nursing practice Boss' (1991) general strategies to lessen stress for families dealing with an ambiguous loss. I believe the following clinical interventions, "the doings," afford nurses, and families with whom they work, a greater sense of control in dealing with grief and managing difficult illness situations.

Strategy I: Presence yourself and acknowledge what can and cannot be done for those experiencing grief and loss.

Foremost, nurses dealing with patient situations in which cure is not possible must work through personal feelings, grief experiences and vulnerability in order to see and intervene more effectively in another 's loss. Additionally, it helps when we recognize that a family's grief work belongs to the family members. Nurses can not take away their loss nor the grief families feel. What is possible for us to give grieving families, however, is our presence. A caring presence during these painful times may often be more significant than what we actually do for them. The courage to stand beside them rather than sidestep their pain imprints a sense of caring and validation. A statement like, "I know this is very hard for you," rather than "How are you?" gives them permission to grieve in our presence. Moreover, listening enables them to tell their story. In a climate of support and empathy, their telling often re-energizes them, making it easier to find useful solutions for managing difficult tasks created by the illness. Myerstein (1994) finds that a combination of the attitudinal stance of "being there" along with facultative activities of a self-differentiated participant observer fosters change in families dealing with chronic illness.

Strategy II: Label the ambiguous nature of the illness loss, helping to clarify lost parts of the relationship as well as what still remains.

In Boss' (1991) view, labeling and acknowledging the nature and implications of an ambiguous loss is, in and by itself, extremely helpful in relieving stress. Once named, the situation can be managed with less anxiety. I often observe family members relaxing back into their seats with relief as the reality of their confusing experience is explained and validated. In addition to labeling and acknowledging the loss, help each family member clarify what is lost forever in the relationship with the ill member as well as what remains, or can still be experienced. The daughter, mentioned in the first example above, may no longer be able to engage in involved conversations with her 92-year-old mother, but she can still enjoy their ritual of sitting on the porch, sharing their love of observing nature. By realizing remaining possibilities for relating, family members can maximize continued, albeit changed, relationship connections. From this new perspective, grieving is more readily resolved and family changes usually begin to emerge out of the clearer boundary distinction.

Research shows when the Alzheimer's patient ultimately becomes emotionally absent, the caregiver, feeling ineffective, becomes less mastery-oriented, and often depressed (Boss, Carón, & Herbal, 1988; Boss, Carón, Horbal, & Mortimer, 1990). Thus, to allay destructive feelings such as failure and shame, a therapeutic goal should be to remove as much ambiguity as possible. Perhaps not so paradoxically, in cases such as dementia, when family members acknowledge the certainty of the illness' uncertain course and outcome, their ability to manage ambiguity increases (Boss, 1991). Education and guidance become important nursing vehicles for enabling family members to gain a sense of control, achieving greater mastery and competency over their situation.

Strategy III: Provide opportunities for family members to share perceptions of loss as well as the meaning they attribute to the illness situation.

Encourage individuals to share their perceptions of loss as a means of strengthening family solidarity. With shared perceptions, members become more sensitized to each other's experience of the illness and relationship loss. Mourning openly together affords more realistic expectations and better understandings of what is transpiring for each family member, opening opportunities for validation and support of each other's needs. Creative solutions matched to the family's style emerge more readily as shared explorations trigger ideas and raise questions about future decision-making and planning. As an example, during an initial interview, an angry son pointed out how his mother neglected her own health issues, sacrificing herself in the service of his famer, while blocking his efforts to relieve her. His mother retorted that the help he offered was not what she needed. This conflict evoked a response from the ill family member who, despite word-finding difficulties, managed to communicate his desire for mother and son to make peace. As grief and loss were further explored, deeper emotions underlying the conflict surfaced. For example, the son told his mother he feared losing her. In turn, his mother expressed guilt about her husband's condition. In the security of mutual support the mother was able to hear her son's ideas for assuming some of the roles over-burdening her. As a result, she became more open to re-engaging in a former hobby as a stress releaser.

In another situation, during a caregiving support group, family stress was reduced when a daughter shared her concerns about her mother 's refusal to take advantage of respite care to develop some rewarding interests beyond the home. During further exploration, the mother's feelings of guilt and isolation decreased as her perceptions shifted from, "my daughter expects more from me" to, "my daughter expects less caregiving from me." As a result, she later placed her husband in a day treatment program, resumed an earlier interest in tennis, and began meeting friends for lunch.

With psychological loss, family caregivers often put their lives on hold or modify the daily course of their lives. For instance, they may give up previously enjoyable activities and companions, losing contact with relatives and friends, neglecting psychosocial, spiritual and sexual needs. Reviewing ways their lives have changed and exploring these secondary losses can often prompt possibilities, albeit modified, for reconnecting to wider supportive networks.

Social contact and interaction with extended relatives, friends and community affiliations further buffers caregiver stress. Emphasize the importance of continuing family rituals and peer gatherings such as birthdays, graduations and church and synagogue activities. Sharing feelings within a wider network not only helps release grief, but often results in new resources for managing caregiving tasks vital for preventing caregiver burnout. Thus, encourage social involvements as well as openness in discussing difficulties being faced.

Additionally, it is important for us to realize that families with chronically ill members construct shared meanings for understanding the illness. Family or individual beliefs can either enhance or impede family growth and grief resolution. For example, some members may feel guilty for blindness to what has been happening or be blamed and resented by others. Others find positive meaning from the travesty, naturally refraining the illness situation. Cultural, religious or family beliefs which invoke blame, shame or guilt are destructive, preventing healthy family restructuring. Creating a meaning for an illness journey that preserves a sense of competency is essential for healing and family reorganization (Rolland, 1991). Nurses should evaluate family members' constructs to ascertain how they view the illness, challenging the validity of destructive beliefs. When the family is unable to reframe their narrative from one of shame or blame to one of pride or protectiveness, our help with refraining is invaluable. Some families grow and change from illness situations; others become preoccupied with connecting the illness to past experiences, such as a belief that they are being punished for transgressions (Doka & Aber, 1989). Assess for families or individuals needing further help in finding meaning or value through the disease. Referral to a family therapist or a self-help group is frequently warranted when destructive perceptions hamper grief resolution, or inhibit cooperation among family members or with treatment protocols.

Although individual perceptions will differ and moreover, evolve over time, the sharing process helps shape congruent perceptions, thereby making the illness journey for family members more bearable (Boss, 1991). For example, one spouse realized while never a patient man, he had as a result of his wife's dementia, developed patience. He felt proud of his competent caregiving and his beliefs were further affirmed by fellow members in his Alzheimer's self-help group. By sharing feelings surrounding the meaning of the illness, blame, failure and defeat can often be reconciled. Although consensus may not be achieved, someone in a family often frames an acceptable unifying view of the situation, thereby reducing family stress.

Strategy IV: Coach, inform and educate about the progression of the disease process and its effects on family members, providing guidance about resources available to lessen the family burden.

Education about what might transpire as the illness progresses is important for family planning. When providing information about probable and /or possible disease progression, it is vital to help the family develop a plan for managing the patient's increasing needs and deficits. With Alzheimer's disease, family members should be apprised of Alzheimer's four primary symptoms: amnesia, apraxia, aphasia, and agnosia and how each of these disabilities can be effectively managed Cutillo-Schmitter et al., 1996; Steele, 1989). Teaching validation techniques (Feil, 1982) is beneficial for reinforcing individual contributions, solidarity and a sense of continued connection to their loved one. Moreover, by encouraging seeking additional help during disease transition phases, nurses reinforce the ongoing need to find new solutions as the disease progresses.

Rolland (1991) suggests that healthy family adaptation is further facilitated by nurses providing opportunities for discussing specific caregiving tasks surrounding the illness, such as:

1) how each one can contribute to caregiving, including assigning tasks to provide necessary respite for the most involved family member;

2) how tasks and roles formerly assumed by the afflicted family member can be distributed;

3) how the family can best continue in the interests of individuals and the family as a whole to pursue interests outside the family.

Through the enrollment of everyone's input, family members of all generations gain confidence in their ability to renegotiate and restructure their lives.

Families must have hope that quality of life can be afforded each member. Therefore, as caregiving plans are explored, assess expectations for each individual, offering alternative suggestions when unrealistic expectations are shared. Legitimize the need for all involved to recognize and balance personal needs with care demands. Since family members do grow from giving back some of the caregiving afforded them by the ill member, suggest a role that each can play. For example, members living further from home may be able to contribute financially for home care service, affording the primary caregiver respite.

Discuss caregiver isolation, stress and subsequent burnout as contributing to serious illness in the caregiver and/or premature institutionalization of frail elderly. Suggest ways to increase caregiver respite, such as utilizing available community services or calling a neighbor to cover for a short break.

Nurses must also observe for underlying depression, common in caregivers. Out of 125 primary caregivers of patients surveyed at our facility, 25% reported using substances such as benzodiazepines or alcohol to cope with their caregiving burden. Counseling and coaching (emphasizing respite, if not daily, at least several times a week) are necessary to mitigate feelings of entrapment and helplessness. I find it easier to convince family members to utilize additional resources when I communicate that it is about deserving support rather than needing help.

Furthermore, help families access and utilize community resources such as day care, inpatient and outpatient health care providers, a legal specialist for living wills and a power of attorney and financial experts for family asset protection. Discuss referrals to advocacy groups such as the Alzheimer's Association and Office of Aging, providing names of groups, addresses and phone numbers that match family needs. Prepare the family for anticipated services over the long term, including counseling and stress management referrals to social agencies as warranted by family need.

CONCLUSION

Ideally, the family must ultimately accomplish the difficult task of letting go, while also remaining connected to the ill family member. Boss' research (1991) shows that the strongest of families have difficulty dealing with ambiguous loss. Therefore, utilizing her model of role and boundary ambiguity can potentiate healthier family coping and grief resolution. The test of successful accomplishment of bereavement tasks is the re-establishment of family functioning and equilibrium.

Nurses must provide hope mat a disease can be managed. Families can be empowered to solve their own problems when they are given enough information to positively impact outcomes. Nurses who offer self while utilizing stress management strategies, making the unfamiliar more familiar, help to build resiliency into the lives of families whose paths they cross. With validation, education, anticipatory guidance and mobilization of needed resources and by labeling boundary ambiguity and the uncertainty of the illness journey, nurses can provide an essential touchstone, supporting and helping family members better negotiate their challenging road ahead.

EDITOR'S NOTE

This is the second in a series of four articles based on presentations made at a symposium. Toward Elder Care in the Year 2000 - Strategies for Enhancing Well-Being, at Wills Eye Hospital, Philadelphia, Pennsylvania, in the fall of 1994. The symposium was co-sponsored by the Wills Germine Psychiatry Program and Thomas Jefferson University Hospital Nursing Continuing Education.

REFERENCES

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10.3928/0098-9134-19960501-09

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