A single moderate-severe traumatic brain injury (TBI) doesn’t just damage the person who sustains the injury: it also harms all of that individual’s loved ones. This article speaks to the assessment of the mourning process after TBI as a means of facilitating individual and family adjustment.
The losses due to TBI are “moving targets” which continue to change over a long period of time: thus the losses are “mobile.” The injured individual and his/her family members cannot grieve lost abilities, for example, because they cannot know for many years which abilities are lost forever and which will eventually return, either completely or in part. Will their loved one live? If she lives will she be in a persistent vegetative state? Will he be able to walk or talk, or carry on a normal conversation? Or do math well enough to return to his profession? If she does not become her old self again, what will her “new normal” be like?
Major changes often go on for years after TBI. Uncertainty about the nature and extent of the losses from TBI produces long-term disorganization of the mourning process. It leaves the members of the family system, and the system itself, in a state of extended turmoil, or Mobile Mourning (Coetze, 2015; Muir and Haffey, 1984; Muir, Rosenthal & Diehl, 1980; Thomas, 2013).
The concept of Mobile Mourning may be applied to any series of severe losses in which uncertainty persists over a long period of time. Mobile Mourning includes fluctuations from euphoria to despair, from mild resentment to rage, from denial to realism. These gyrations may go on indefinitely if left untreated.
The “partial deaths” (Shneidman, 1983) of individuals with moderate-severe TBI range from major residual symptoms to virtually complete personality change. The damaged organ is, after all, the seat of the personality, the active repository of everything that makes an individual him- or herself. Major changes in the behavioral repertoire of the injured person call for changes in role expectations of all the other Family System members. Even the established ways family members relate to each other may be altered dramatically. As when a father and daughter who always talked things out no longer speak, because one of them believes it is time to take the injured person off life support.
Family systems may be more or less psychologically healthy or unhealthy, functional or dysfunctional. Regardless, they are relatively fixed systems with established structures, ways of relating and within-family rituals. These systems have evolved over time as to meet the developing personalities and needs of the members. The family system and its members are usually in a state of equilibrium. Most losses are accommodated by individual grieving and small systemic adjustments. TBI, however, often causes catastrophic losses which require extremely difficult changes in roles and relationships. The changes are to the family system itself.
The ability of family members to adapt to seismic changes depends on many variables. These variables include personal resilience, pre-TBI roles with the injured individual and perceptions of recovery or recovery potential, to name but a few. A wife, for example, may find the injured individual so changed that her role is turned upside down, from equal partner to caregiver. A mother, by contrast, may be more comfortable as a caregiver because that is closer to her previous role.
The single most important personal variable seems to be resilience. A very resilient family member can usually adapt to change more readily than a person who has little resilience. Fortunately, many personal variables such as resilience, personal independence and interdependence can be strengthened with targeted treatment (Lavretsky, 2014).
Persons with brain injuries and their families usually come to rehabilitation with their most vital roles, relationships and rituals in disarray. Systemic changes require major restructuring of roles and relationships, but the people coming to us do not know that. They only know that they are desperately unhappy. The brain injured person is still present, alive and needing support. But the Family System that would provide that support is often reeling.
In their desperation, the family system reforms briefly and then breaks up again, often floundering in dysfunctional re-alignments and untenable roles. For example, a spouse may at first become a willing caregiver but eventually find that role to be unbearable. Or groups of family members may align against others based on differing beliefs about recovery potential; the alignments break up when symptoms change (or don’t change) or when the estrangements become too painful to maintain.
Injured individuals and their family members are often angry, blaming, guilty and at odds. We must expect that some of that anger will be directed at us as rehabilitation professionals in our own “professional family system”. One of our most important tasks in TBI rehabilitation is to help families move in the direction of a more positive and resilient family system.
We cannot hope to accomplish the healing of family systems all by ourselves, regardless of how caring and dedicated we may be. We can, however, begin the process of healing. This starts with the assessment of the needs and strengths of individuals with brain-injury, their family system members and each family system itself. We can then provide treatment that is tailored for each family system and is within the scope of our programs. Many family members are helped just by getting an understanding of the Mobile Mourning process in which they are enveloped. We can also help them begin to reformulate their family system in the direction of long-term health and a new equilibrium.
Of necessity, we must involve community resources to walk alongside us and continue the work when the family moves on. In addition to the usual agencies, caseworkers, therapists and doctors, we can help families connect with the rich array of non-traditional therapies. Acupuncture, mindfulness meditation, animal-assisted therapy, faith-based programs and vocational training and so on may be extremely helpful.
Persons with brain injuries and their families come to us when their lives, their roles and how they relate to each other are “Jabberwocky.” One our most vital tasks in TBI rehabilitation is to help them sort through the “blooming, buzzing confusion” of Mobile Morning, so they can begin their journey toward a newly refurbished family system.
Coetzer, R: Traumatic Brain Injury Rehabilitation, A Psychotherapeutic Approach to Loss and Grief. Nova Biomedical Books, New York, New York, 2006.
Lavretsky, H: Resilience and Aging. Johns Hopkins University Press, Baltimore, Maryland, 2014. Muir, CA;
Rosenthal, M; Diehl, L: Methods of Family Intervention. In Rehabilitation of the Adult and Child with Traumatic Brain Injury, 2nd Edition. M Rosenthal, ER Griffin, MR Bond & JD Miller (Eds.) F.A. Davis, Philadelphia, Pages 433 – 448, 1980.
Muir, CA and Haffey, WJ: Psychological and Neuropsychological Interventions in the Mobile Mourning Process. In Behavioral Assessment and Rehabilitation of the Traumatically Brain – Damaged. BA Edelstein and ET Couture (Eds.) Plenum Press, New York, New York, Pages 247 – 272, 1984.
Shneidman, ES: Deaths of Man. Jason Aronson, Inc., New York, New York, 1983.
Thomas, C: Low awareness conditions: their assessment and treatment. In: Practical Neuropsychological Rehabilitation in Acquired Brain Injury. G Newby, et al (Eds.) Karnac Books Ltd, London, Pages 159 – 178, 2013.
About the Author
Venturing out from a small farm in Oregon, Dr. Muir soon found himself at the University of Southern California getting a PhD in Clinical Psychology. Next he fell into a job at Casa Colina Hospital for Rehabilitation and entered the exciting new field of TBI rehabilitation. Dr. Muir was blessed to meet creative people all over North America who were developing TBI programs. Everyone freely shared problems and ideas, trying to figure out what worked and discard what didn’t. The post-doctoral Neuropsychology program UCLA beckoned and later Dr. Muir had the opportunity to help Loma Linda University Medical Center expand its neurorehabilitation program. He helped develop a neuro-psychology testing program at a local state university. A whole new world of students with cognitive challenges beyond TBI opened up to me. Though “retired,” Dr. Muir still enjoy assessing and treating adults with cognitive troubles, at Gunn Psychological Services when he is not inventing fun things in his workshop, that is. As his therapist observed many years ago, “It’s a Wonderful Life if you don’t weaken.”
Muir, C. A. (2016). Assess Mobile Mourning After Moderate to Severe Traumatic Brain Injury. Brain Injury Professional, 13(3), 12-13.
From Brain Injury Professional, an official publication of the International Brain Injury Association and the North American Brain Injury Society. www.braininjuryprofessional.com Reprinted with permission.