INTRODUCTION

In the process of living our lives, we encounter losses on a regular basis, but we often do not recognize their significance because we tend to think of loss in finite terms, mainly associated with death and dying, and not more generally in terms of adaptation to life-altering events and changes. We know that grief is the normal, unique response to loss. However, the assumption is often made that grief is only associated with losses that occur after the death of a loved one. We think that this view of grief is quite narrow. Of course, grief will normally follow the death of someone who we cared about deeply. But does a person have to die for grief to occur? We think that grief is a process that enables us to rebuild our assumptive world after it has been broken, even shattered, by a significant loss event, and losses that are both death and nondeath-related can assault our assumptions about how the world should work. In this chapter, we explore different types of nondeath losses, their unique features, and their impact on us.

Most of the current bereavement literature focuses on death-related losses, and many of the measures used in bereavement research are rooted in the identification of “separation distress” from another individual as the primary feature distinguishing grief from other responses and states, such as posttraumatic stress, depression, and anxiety (Maciejewski, Maercker, Boelen, & Prigerson, 2016). Separation distress is characterized by yearning, longing, preoccupation, and searching for the deceased individual (Boelen, Lenferink, Nickerson, & Smid, 2018). However, the emphasis on grief in terminology that relates only to the death of a person does not consider the possibility that the same grieving process also allows individuals to integrate significant losses that are perhaps not as tangible or overt. In reflecting upon this aspect of bereavement theory and research, we need to consider the possibility that the emphasis on separation distress after the death of a loved one may be limited in scope. Grief can be more broadly defined as the distress that occurs when an individual’s existing assumptive world is lost because of a significant life-changing event, or what Tedeschi, Shakespeare-Finch, Taku, and Calhoun (2018) would refer to as a “seismic” life event. Indeed, Bowlby’s (2005) descriptions of yearning, pining, longing, and searching (which are all considered the hallmarks of separation distress over the loss of a significant attachment figure) can be identified in various ways in the experiences of non-death losses as well.

THE ASSUMPTIVE WORLD AND LOSS

Significant life-changing events can cause us to feel deeply vulnerable and unsafe, because the world that we once knew, the people that we relied on, and the images and perceptions of ourselves may prove to be no longer relevant in light of what we have experienced. Grief is both adaptive and necessary in order to rebuild the assumptive world after its destruction. It would certainly follow that the process of making meaning, which is a part of the grief response, is applicable to both death-related and non-death-related losses. Papa and Maitoza (2013) explored grief in the presence of involuntary job loss. Their findings showed support that grief is contingent upon loss of a self-defining role as opposed to loss of others exclusively. Papa, Lancaster, and Kahler (2014) also found similar results suggesting that grief is not a unique response to loss of loved one, but instead it may be a common phenomenology across many types of loss. In a study of bereaved university students, Varga (2016) found that many of her participants indicated that nondeath losses had more significance in their lives than did death-related losses:

Cooley, Toray, and Roscoe (2010) developed an instrument to measure grief after all types of death and nondeath loss events. The Integration of Stressful Life Events Scale (ISLES)—Nonbereavement Version, developed by Holland, Currier, and Neimeyer (2014), measures struggles with the comprehensibility of the loss event and individual’s sense of secure grounding or footing in the world, and the Social Meaning in Life Events Scale (SMILES; Bellet, Holland, & Neimeyer, 2019) identifies issues related to validation or invalidation of loss experiences and responses within an individual’s social network and provides an indication of needs for social support and validation in different types of loss experiences. Both of these measures can be useful in the context of non-death-associated grief.

Moving away from the strict definition of grief only occurring after loss through death could be potentially helpful to the clinical process with clients who grieve all types of losses. We hope to see more research in the future that addresses the process of grief after the experience of nondeath losses, allowing recognition of grief that occurs in a much broader context than only after a death occurs.

As we have already discussed, attachment is identified as a key element in grief, and the attachment model provides an ethological¹ element to the grieving process. Bowlby’s (1988) research demonstrated that the searching and pining behaviors seen in young children who were separated from their mothers resemble the behavior seen in young primates that were subjected to similar conditions. Parkes and Prigerson (2013) expanded this work into the area of adult bereavement and suggested that the attachment system, and the resulting grief when that system is threatened by separation, is an extension of a process that has evolved over time to optimize feelings of safety and to enhance the chances for survival of the individual. From the perspective of evolutionary biology, attachment and the resulting grief that comes with separation appear to confer a survival advantage to the individual.

If grief and attachment are thus interrelated, then to what are we attached when we grieve a nondeath loss, such as loss of a sense of safety, loss of our homeland, or loss of employment? It could be that these defining, overarching losses involve either the loss of an aspect of ourselves to which we are attached or to our place in the world, which makes us feel safe and secure. For example, it is common for immigrants to yearn for their family and friends who are still present in their homeland, to search for what is familiar in their new environment, and to look for commonalities with their known culture in the new country of their arrival. The well-known term “comfort food” implies that identification with foods that are associated with our family and cultural roots provides a sense of comfort when we are stressed or are in unfamiliar territory. Individuals who have lost their jobs may pine for their old lives or selves to return to them, reminiscing about what they used to do or who they used to be. The natural process of aging often catches us by surprise and we wonder, “Where did that woman in the mirror come from, and where did I go?”

The disequilibrium that results from these types of losses can activate the attachment system, motivating us to draw closer to what is familiar and safe, and the grieving process enables us to adapt to some part of ourselves or our life that is markedly different from what it was before. As discussed earlier, Janoff-Bulman (1992) draws a connection between one’s assumptive world and one’s attachment system, stating that how one relates to and views the world, others, and oneself is an extension of the attachment system that is formed at a very young age. Thus, it would make sense that threats to the assumptive world resonate back to the attachment system upon which that world was built.

NONFINITE LOSS AND CHRONIC SORROW

Patricia met James the week after her mother died from a prolonged fight with cancer. James was sitting at a table in a coffee shop, and the only empty chair in the entire place was next to him at the same table. He looked like he was content to read his paper while sipping his drink, and Patricia needed a place to set her laptop down to work while she drank her morning coffee. James was more than happy to offer the chair and table top to Patricia, and once they started talking, they hit it off very well. Over the next year, they dated, traveled together, and met each other’s extended families and close friends. They were such a good fit—even their dogs liked each other! They were married the next year, and they settled into a comfortable routine of sharing meals, walking the dogs, traveling, and reading snippets of the paper to each other on Sunday mornings. They also began trying to have children, and they had discussed the possibility of either adoption or fostering a child to share their loving home with them.

One Sunday morning, James woke up and did not feel well. He was dizzy and felt weak. He called out to Patricia as he was getting out of the shower, and then collapsed in a heap on the floor. Patricia called 911 and an ambulance came and took James to the emergency department of the nearest hospital. Patricia was told that James had suffered a stroke and that he would survive, but it was unlikely that he would be able to speak, and he would not be able to use one side of his body. He would have a great deal of difficulty walking because of this weakness, and it was recommended that he spend a few months in a rehabilitation center to help him to gain as much function back as possible.

Patricia was now 42 years old. They did not have children. Their parents were older and had significant health problems. James was able to come home after Patricia made modifications to the house to accommodate a wheelchair and the special needs he had for personal care. She resigned from her position at work so that she could care for James, taking early retirement, which paid her less than half of her usual income. As time went on, fewer and fewer friends came over to visit; most of the time when the doorbell rang, it was someone from the home health agency arriving to provide care of some sort or to bring medical supplies that were needed. James could understand what Patricia said to him, but he would become very frustrated when she could not understand what he wanted or needed. After several months of caregiving, Patricia slumped herself down in a chair in the corner of the bedroom while James slept. Tears flooded as she assessed her life—or what was left of it. She would never have children. She could not just run to the store to pick something up without making arrangements for someone to be with James. James could stay like this for years, or he could get worse, and she often worried about neglecting something important and cause a complication to occur to James. She felt completely exhausted and alone.

This scenario has many losses in it. However, none of the losses are because someone died; rather, the losses are ongoing, and they exist and mingle with the everyday life of Patricia and James as time goes on. We would call these losses living losses, and most of them would fit into the category of nonfinite loss. Nonfinite losses are those loss experiences that are enduring in nature, usually precipitated by a negative life event or episode that retains a physical and/or psychological presence in an ongoing manner (Bruce & Schultz, 2002). Some forms of nonfinite loss may be less clearly defined in onset, but they tend to be identified by a sense of ongoing uncertainty and repeated adjustment or accommodation. Some nonfinite losses begin as finite events, but their aftereffects will be experienced for the rest of an individual’s life. This is the case with Patricia and James, as the stroke itself was a finite event; the ongoing needs for care as well as the uncertainty and complete change in their relationship and lifestyle represent the nonfinite aspects of this loss experience. There are three main factors that separate nonfinite loss experiences from the experience of a death-related loss:

The cardinal features of the experience of nonfinite losses include:

Jones and Beck (2007) further add to this list a sense of chronic despair and ongoing dread, because individuals try to reconcile themselves between the world that is now known through this experience and the world in the future that is now anticipated.

In short, the person who experiences nonfinite loss is repeatedly asked to adjust and accommodate to the loss. At the same time, because nonfinite loss is often not well understood, the experience may go unrecognized or unacknowledged by others. Support systems may tire of attempting to provide a shoulder to lean on.

A related concept to nonfinite loss is that of chronic sorrow, a term that was first proposed by Olshansky (1962) after his observations of parents whose children were born with disabilities. He noticed that these parents experienced a unique form of grieving that never ended as their children continued to live and the hopes that they had for these children were repeatedly dashed as time went on. Shortly after the introduction of the concept by Olshansky, there were a few articles written about the adjustment and coping in parents of children with various developmental disabilities. Since then, most of the research associated with the concept of chronic sorrow has been reported in the nursing literature. The concept of chronic sorrow has been described in multiple sclerosis, parenting a child with a mental health problem, Alzheimer’s disease, autism, infertility and involuntary childlessness, mental illness, and caring for a child with disabilities. Chronic sorrow has also been linked to Parkinson’s disease, mental retardation, neural tube defects, spinal cord injury, schizophrenia, and chronic major depression (Roos, 2017). Chronic sorrow is often found in situations involving long-term caregiving. Chronic sorrow is defined by Roos (2017) as:

The way in which the loss is perceived determines the existence of chronic sorrow. The essence of chronic sorrow is a painful discrepancy between what is perceived as reality and what continues to be dreamed of or hoped for. The loss is ongoing since the source of the loss continues to be present. The loss is experienced as a living loss. Chronic sorrow remains largely disenfranchised and often escalates in intensity or is progressive in nature. Although chronic sorrow is often linked to a defining moment, a critical event, or a seismic occurrence, it can just as easily be the hallmark of the slow insidious realization of what a diagnosis means over time and how it has caused change for the lives in its wake. In our discussions in this chapter, the term nonfinite loss will refer to the loss or event itself, and chronic sorrow will refer to the response to ongoing, nonfinite losses.

Burke, Eakes, and Hainsworth (1999) describe chronic sorrow as akin to grief-related feelings that emerge in response to an ongoing disparity resulting from the loss of the anticipated and expected normal lifestyle of an individual. Teel (1991) stated that in addition to the disparity that exists between what is expected or hoped for and what actually is in reality, the chronicity of the feelings and the ongoing nature of the loss separate chronic sorrow from other forms of grief. According to this author, chronic sorrow can be precipitated by the permanent loss of a significant relationship, lost functionality, or self-identity.

Lindgren, Burke, Hainsworth, and Eakes (1992) define the characteristics of chronic sorrow to include: (a) a perception of sadness or sorrow over time in a situation with no predictable end, (b) sadness or sorrow that is cyclic or recurrent, (c) sadness or sorrow that is triggered internally or externally, and (d) sadness or sorrow that is progressive and can intensify. Chronic sorrow is differentiated from the grief response after a death in that the loss itself is ongoing, and thus the grief is also ongoing and does not end. These authors stress the peaks and valleys, resurgence of feelings, or periods of high and low intensity that distinguish chronic sorrow from other types of grief responses. An individual’s emotions might swing between being emotionally flooded on one side, with being emotionally numb and paralyzed at the other side of an emotional pendulum. Most people who experience chronic sorrow generally reside somewhere between these two end points, but fluctuations are common.

Roos (2017) also states that the loss involved in chronic sorrow is a lifetime loss and remains largely unrecognized for its significance. One’s assumptive world is shattered and there is no foreseeable end, with constant reminders of the loss. She states that there is also an undercurrent of anxiety and trauma that separates this type of response from grief that is experienced after the death of a loved one, and the fact that the person usually continues to function separates it from primary clinical depression (Table 8.1).

Chronic sorrow differs from posttraumatic stress disorder because of the ongoing nature of the loss and the fact that it is not a reaction to an event that has occurred, even though there may be an event that defines when the loss began. The traumatic material in nonfinite loss is related to the degree of helplessness and powerlessness that is felt in light of a situation that has profound, ongoing, and life-altering implications for the individual.

Roos (2017) makes the point that chronic sorrow may apply more to those who are caregivers, because the affected individual may not be able to internalize the world in such a way as to be able to have dreams or life goals, and the intensity of the experience of chronic sorrow is related to the potency and magnitude of the disparity between the reality of the situation and the dream to which a person may cling. The outcome is really unknown, or the progression of what will unfold is unknown, so unpredictability complicates the process. The ongoing presence of the person or the loss inhibits reinvestment into other aspects of life, and there are “surges” of grief that are often triggered by various events, as might occur in individuals whose loss was related to the death of another individual.

AMBIGUOUS LOSS

Janice pulls her car into the garage and begins to unload the groceries into the kitchen. She knows that her husband, Richard, is home because his car is in the garage, but she does not expect a greeting from him when she gets in the door, and she also does not seek him out to say hello when she gets home. Their two teenage children, Cynthia and Rachel, come home from school and immediately go upstairs to their rooms and close the doors. Janice finishes unloading the groceries and prepares dinner. She calls them all when dinner is ready, and they sit at the table to eat together. However, Richard turns the TV on as they are about to sit down at the table, and he watches the news while eating, not saying much to Janice or the girls. Cynthia has begun hanging out with friends from the volleyball team, and she spends a good portion of the dinner time texting back and forth to them on her cell phone. Rachel has her headphones on when she comes to the table, not bothering to remove them when she begins to eat dinner. Janice looks around at the table. She tries to make conversation and ask each one of them about their day. Richard mutters something quick while still watching the TV program, like “Just fine … busy,” whereas Cynthia tries to talk and text at the same time without success, and Rachel acts perturbed at having to remove her headphones to answer her mother’s query. Finally, Janice too eats in silence and watches the TV. Later that night, Janice feels overwhelmed with sadness, but she does not know why. She goes downstairs to get a glass of milk, sits at the kitchen table, and begins to cry.

Many of the nondeath losses that are experienced by individuals are very difficult to name, describe, or validate. As stated previously, many losses are not clearly defined because there is no identifiable “death.” For many individuals, it may be unclear exactly what has been lost. The loss may or may not involve a person and there may not be a defining experience to denote where the loss actually originates. In her development and exploration of loss experiences where there was significant ambiguity, Boss (1999) first used the term ambiguous loss. She described two situations in which ambiguous loss occurs. In the first scenario, the person is perceived as physically absent but psychologically present. Examples may be when a person is missing, such as in divorced families when the noncustodial parent is absent but very much present in the minds of the children. Prisoners, kidnapping victims, relatives serving their country overseas, adoptive families, and situations when a person is absent or missing but very much present in the minds or awareness of their loved ones may also fit this description. Another frequent example would be grandparents who lose contact with their grandchildren after the parents of these children divorce, so they are physically not able to spend time with them, yet thoughts of these children frequently occupy their minds and cause a feeling of grief.

In the second scenario described by Boss, ambiguous loss may be identified when the person is physically present but perceived as psychologically absent. Examples of this type of loss may be when a family member has Alzheimer’s disease, acquired brain injury, autism, a chronic mental illness, or if there is a family member who is psychologically unavailable because of addictions or some type of ongoing distraction or obsession, as is the case for Janice with her family. Each of these scenarios leaves individuals feeling as if they are “in limbo” as they struggle to learn to live with ambiguity (Boss, 2016).

Boss’s first observations of this phenomenon occurred when she engaged with families in a therapeutic setting, where the family system was outwardly intact, but one of the members was absent psychologically from the family through obsessive workaholism or addiction.

Key aspects of ambiguous loss include the following (Boss, 2016):

Boss (2016) describes the experience of ambiguous loss like a “never-ending roller coaster” that affects family members physically, cognitively, behaviorally, and emotionally. Physical symptoms may include fatigue, sleep disturbances, and somatic complaints that may affect various body systems. Cognitive symptoms may include preoccupation, rumination, forgetfulness, and difficulties concentrating. Behavioral manifestations may be expressed through agitation, withdrawal, avoidance, dependence, or a pressing need to talk at times. Emotionally, individuals may feel anxious, depressed, irritable, numb, and/or angry. It is not uncommon to be misdiagnosed with an anxiety disorder or a major depressive disorder (Boss & Ishii, 2015).

LIVING LOSSES

There is a great deal of overlap between losses that are nonfinite and losses that are ambiguous (Figure 8.1).

FIGURE 8.1

Overlapping constructs in nondeath loss and grief.

Perhaps much of the distinctions have to do with their origin in different fields of study, and thus the lens that is used to describe these experiences reflects different ways of viewing loss experiences that may have many similar features. In the literature, nonfinite loss is described more from an intrapersonal perspective, with the loss experience focusing on the individual’s perception and coping (e.g., what did I have that I am now losing), whereas ambiguous loss is a concept that was formulated within a family stress model, and the loss is described in terms of how the family members perceive and define the loss according to the boundaries of the family system (e.g., who is absent from the family system that should be present). In the descriptions of nonfinite loss and ambiguous loss, the common features include: (a) dealing with ongoing uncertainty that causes emotional exhaustion, (b) shattering of assumptions about how the world should be, and (c) a lack of rituals and validation of the significance of these losses. Nonfinite loss, ambiguous loss, and chronic sorrow may be linked not only to real losses, but also to perceived, symbolic, or secondary losses. They may all be accompanied by shame and self-loathing that further complicate individual authenticity and truthfulness in other relationships, thereby adding to the struggle with coping. For example, Janice may blame herself by thinking that she has been a poor partner to Richard or an inadequate mother to Rachel and Cynthia for her family to be so disconnected; this self-perception could undermine her sense of self as worthy or valuable to others, which is a core aspect of the assumptive world.

Although ambiguous losses, nonfinite losses, and chronic sorrow are often disenfranchised (Boss, 2009; Casale, 2009; Doka, in press; Roos, 2017), the ongoing grief is normal and understandable. Recognition that life as it has been or was expected to be is lost and has been replaced by an initially unknown, unwanted, and often terrifying new reality is extremely difficult, forcing a new appraisal of one’s assumptive world. Beliefs that life is predictable and fair and the notion of justice and compensation cannot survive in the new reality. The self and the world must be relearned. This process is often a disturbing and ongoing focus of concern. There exists a significant body of research on ambiguous loss that indicates a relationship to depressive symptoms and family conflict (Boss, 2009; Carroll, Olson, & Buckmiller, 2007).

IMPLICATIONS FOR COUNSELING

The practice considerations related to both ambiguous loss and chronic sorrow underscore the importance of normalizing the ongoing grief that is present. The main issues that create the most difficulty for those affected by living losses are the fact that the grief persists for a prolonged or undetermined time, and the uncertainty about how things will or will not progress creates an undercurrent of anxiety, which is often experienced as an unmet expectation by professional caregivers. Exhaustion is common for the ones directly affected by the loss as well as by the helpers who are involved in the situation. Social supports begin to dwindle as people tire of the ongoing litany of loss, and as relationships change due to differing abilities and priorities.

It is important to recognize that in these scenarios, the ongoing grief is a normal reaction whether the loss is related to something tangible, such as a person or a thing that is greatly valued, or something less tangible, such as a hope or expectation. Because the loss and its effects are ongoing in nature, the grief and sorrow that occur secondary to the loss are ongoing as well, without any end in sight. Flexibility in providing counseling to an individual, couple, family, and group in various constellations at different times can assist in supporting those who are taking on most of the responsibilities. Finding ways to adjust and redefine roles in the family can help to minimize chaos, reduce stress, and improve relationships. One other important point to note is that nonfinite and ambiguous losses may comingle with losses that occur from death. For example, one client who sought counseling for support after her husband died came initially to share her grief over the loss of her husband. Later on, the grief was more about the loss of herself when she married her husband, who had been a very controlling and abusive person in the marriage. The initial consultation was for a death-related loss, followed by another layer of her grief that was both nonfinite and ambiguous in nature.

CONCLUSION

Living losses occur with great regularity in everyday life. Some of these losses effect change in us in subtle ways, and the adjustments to our assumptive world are minimal. However, living loss experiences continually shift the sand where we are standing, resulting in an ongoing sense of disequilibrium and adjustment. Not only can we no longer be the same as we were before, but any ideas or dreams about what the future would hold have also been wiped out from our projections about what we hoped our lives would be like. Losses that are ongoing require frequent accommodation and adjustment, and they provoke a profound grief response that is also ongoing and unpredictable in nature. When living losses require us to rebuild our assumptive world, counselors must be able to journey alongside a sometimes arduous and prolonged process, helping clients to see their deeper strengths and resilience as they grow and deepen in the midst of their ongoing grief and adjustment.

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REFERENCES