Living with Traumatic Brain Injuryby Nirupama Shankar, PT, MHS | July 14, 2008
A lady (let’s call her Carla) is driving down a street — it’s 10:00 pm on a Friday night. She thinks about her kids in bed, makes a mental note to check in on them before she goes to bed. She wonders what her boss has in store for her at the 8:00 a.m. meeting that was scheduled a week ago. Suddenly there is a blinding flash of light; a deafening crash, and her world goes black. Sound like a scene from a movie? I wish it were. According to the CDC, 1.4 million people in the USA sustain a traumatic brain injury (TBI) annually; 20% of these are caused by motor vehicle accidents (MVA). Fifty thousand of these traumatic brain injuries result in death each year. Carla might never be able to communicate with her children meaningfully. She certainly will not be able to get back to her work any time soon (if ever). Her social network will be disrupted; her schedule will be a series of medical appointments and consultations.
Unlike a fracture or an elective surgery, the ordeal does not end after the medical procedures are through. When a person sustains a TBI — in most cases families face some of their toughest challenges after the immediate palliative procedures are complete. The patient goes through acute care, an inpatient rehabilitation program, and then may be discharged to their home. In some cases, if they are medically unstable they are required to stay at post-acute settings and also receive outpatient rehabilitation. Some states in the USA also offer long-term care centers for those patients who might never be able to function safely and independently in their homes. These centers usually become permanent “homes” for these patients. Caregivers are often torn between running their homes and visiting their loved one; living their own life and accompanying their loved one to various medical appointments.
The residual physical impairments are only one aspect of the injury. Patients with TBI are prone to emotional disturbances, outbursts and attacks of a myriad of emotions ranging from depression to frustration to extreme rage. Anson and Ponsford studied 33 individuals with brain injury, and found that 51% of them had clinical levels of depression and anxiety (based on their scores on various scales that were administered. They also elaborated upon two styles of coping — non-productive coping (avoidance, self-blame, resorting to drug and alcohol use, etc) and adaptive coping (accepting the problem, and taking proactive steps, incorporating humor and enjoyable activities, etc). The results of their research study suggested that there was a statistically significant correlation between the type of coping mechanism used and ability to overcome the emotional problems.
As a physical therapist, I have spent more than 10 hours a week with one patient and their families. This intense, one-on-one time gave me a glimpse into their current lives and a hint of how things were before this terrible episode dictated every aspect of their lives. I worked with moms who did not recognize their children, with professors who had completely lost the function of speech and teenage boys who would spend all of their adult lives confined to a wheelchair. I saw families attend session after session, hoping to find a fragment of the person they once knew and loved.
For families, living with someone they don’t recognize any more, being pushed suddenly into the role of a caregiver, and dealing with all the emotional ups and downs of the patient takes a physical and emotional toll. A recent literature review study that was published in the Journal of Clinical Nursing indicated that a family member’s cognitive, behavioral and psychological impairments of are greater stressors to the family than their physical disabilities after a TBI. The same study also suggested that partners of people with a TBI scored higher on stress indicator scales than parents; for the most part, women appeared to be more stressed than men.
For most people who have not been through these experiences, this information may be unfamiliar, and difficult to relate to. But the only way that people with TBI may be reintegrated into the community is increasing awareness about this complex disease. Understanding the intricate complexities in the lives of people living with brain injury will hopefully will make us more accepting of people. We can then do our part to assist patients reintegrate smoothly into the community. TBI is a disease that can be prevented by increasing awareness in the community and education with safety tips. The National Institute of Health and the Brain Injury Association are excellent resources for the entire spectrum of Brain Injury.
Verhaeghe, S., Defloor, T., Grypdonck, M. (2005). Stress and coping among families of patients with traumatic brain injury: a review of the literature. Journal of Clinical Nursing, 14(8), 1004-1012. DOI: 10.1111/j.1365-2702.2005.01126.x
Godfrey, H.P., Knight, R.G., Partridge, F.M. (1996). Emotional Adjustment Following Traumatic Brain Injury: A Stress- Appraisal-Coping Formulation. Journal of Head Trauma Rehabilitation, 11(6), 29-40. DOI: 10.1097/00001199-199612000-00006
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