Where there's change there's loss
and where there's loss there's grief.
Bill Bridges
Hi Everyone,
I've been writing about the grief of family caregivers this weekend and I was struck by how many terms now exist to describe this experience. The professional writings about caregiver grief are fraught with confusion and contradiction due to the increasing number of overlapping terms and concepts. This differing terminology arises from different professional fields, the study of different medical conditions, research in different nations and cultures, and studies from different times in history. I'll share a few of them with you here:
1. Anticipatory Grief is the earliest of the overlapping concepts applied to the natural and expectable grief of family caregivers. It was coined by German psychiatrist, Erich Lindemann, in 1944, to describe grief we experience before a loss actually occurs. Later, Therese Rando expanded the concept, defining it as:
The mourning, coping, interaction, planning and psychological reorganization that are stimulated and begun, in part, in response to the impending loss of a loved one and the recognition of associated losses in the past, present and future. (2000, p29)
Many writers assume that anticipatory grief is synonymous with caregiver grief. However, in my personal and professional experience, anticipatory grief comprises only a portion of a family caregiver's heartbreak. To a great extent, caregiver grief also includes responses to current loss. Workshop participants tell me that while the pain associated with the anticipated death of a loved one is certainly part of their reality, their greatest source of sorrow is the daily losses associated with current changes and adaptations.
2. Chronic Sorrow (CS) is the second term used to describe caregiver grief. It first appeared in the literature in 1962 in an article written by American social worker and advocate for families of developmentally delayed children, Simon Olshansky. At the time, family caregivers were seen as being unaccepting of their children's diagnoses, stuck in their grief and, therefore, difficult to deal with. Olshansky offered another viewpoint, saying that these parents were suffering from expectable, continuing, episodes of grief that flowed from the losses occurring across their children's lifespans. He pushed for caregiver support rather than medical attitudes of pathologizing and criticism.
After an initial flush of interest in Olshansky's ideas, CS disappeared from the literature until the mid-1990's when the Nursing Consortium for Research on Chronic Sorrow published several studies confirming the concept and studying its characteristics. Later, in 2002, family caregiver and psychologist, Susan Roos, PhD, gathered the research to date and combined it with her considerable personal and professional experience to publish the first (and only) psychotherapy textbook on CS. Her book included this comprehensive definition of caregiver grief, one which includes both the grief of people with serious, permanent, medical conditions and that of those who love them:
Chronic sorrow is a set of pervasive, profound, continuing and recurring grief responses resulting from the loss or absence of crucial aspects of oneself (self-loss) and another living person (other-loss) to whom there is a deep attachment. (2000, p29
At its core, CS is the grief resulting from resulting from an aching discrepancy between life as it is and life as it could or should have been had the illness or injury not occurred.Since 2002, multiple research articles have continued to be published.
3. Ambiguous Loss is the third concept to describe the unresolved grief of family caregivers It appeared in the literature in 1999, much later than Chronic Sorrow. The notion was developed by educator and researcher, Pauline Boss, PhD, with little or no knowledge of the prior CS research. Arising from the study of families whose soldier relatives were missing in action, and then applied to the dementia and adoption fields, it describes the losses and grief related to caring for people who are physically present but psychologically absent or psychologically present but physically absent. Thus, the reality of the loss remains ambiguous or uncertain.
(I see this and the other concepts described here as subsets of Chronic Sorrow.)
4. Non-finite Loss, our fourth concept, was developed by Bruce and Schultz in 2001 to describe the lifetime of continuous and insidious loss and grief experienced by parents of developmentally delayed children. They focused attention on the parents' gradual discovery of the impact of illness or disability with the accompanying loss of hopes, dreams and expectations. This term has also been applied to family caregivers of those with degenerative diseases such as MS, motor neurone disease and dementia. It has been used to describe the reactions of families with non-medical losses such as those with a relative waiting on death row as well.
5. Pre-death Grief is the fifth and final term to be considered here. It was coined in 2014 to provide a standardized definition of caregiver grief upon which to base professional theories and research questions. Pre-death grief is defined as the caregiver's emotional and physical response to the perceived losses of a valued care recipient.
While facilitating workshops on caregiver grief, I tend to use the term, Chronic Sorrow. Why? Because, while the other terms all reflect important aspects of caregiver grief and there are logical reasons for their presence in the literature, they are all in some way incomplete. CS, on the other hand, has a specific, comprehensive definition that includes the grief of both patient and caregiver, it offers the clearest demarkation between pre and post-death grief, it has a long medically and psychologically-oriented research history, and, most importantly, it has the most immediate and profound emotional resonance with family caregivers.
When I ask workshop participants which term they prefer in describing their grief, they are emphatic, and usually unanimous, in choosing Chronic Sorrow. It most accurately and empathically communicates their experience and that, it seems to me, is the single most important reason for choosing any terminology.
I'm hoping to offer a community workshop on Chronic Sorrow for family caregivers in Vancouver again next spring. If you think you might be interested in attending, just subscribe to the mailing list in the left hand column of the website and you will automatically receive a registration brochure.
