TBI: Who is Looking After the Caregivers

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Old man with a TBI
There is a growing community of people who are providing care to their loved ones who have experienced a brain injury. What unites the people in this community is their decision to focus their lives on the needs of their family member who can no longer care for themselves. Jobs, friends, other family obligations, a social life, even their life savings can fall by the wayside as they give over their lives to provide basic care for an injured family member. This could be caring for a spouse who came back from Iraq or Afghanistan with a Traumatic Brain Injury; a young adult who will never move into their own life following a devastating car accident; a parent who has a brain injury from a fall in their home or a child who experienced an injury playing high school football. The caregivers range from young adults to people who are facing their own issues with aging. The toll paid by caregivers is enormous.

Caregivers are at risk for developing problems with stress, depression and anxiety as they cope with care routines created by the injured person’s physical and cognitive disability, personality and behavioral changes and alterations to their social role within the family. The stress of care giving can cause physical and mental health problems for caregivers as the duration of a brain injury disability can extend over a lifetime. Additional stress factors are created by the financial hardships related to lost income, with a significant number of caregiver households below the national average, higher uninsured healthcare costs and the impact of social isolation. Caregivers themselves face the problems associated with aging. We see this as adults with a brain injury return to living with aging parents or as a spouse becomes the primary caregiver for their mate who is in their 70’s.

What happens if a caregiver stops caring? Where does the person living with a brain injury go? Who will care for them? As we ask these questions we also need to ask: Who will care for the caregivers?

An article in the New York Times of September 28, 2011 entitled “Looking After the Soldier, Back Home and Damaged” describes the difficult situation faced by April Marcum as she takes care of her husband Tom, who was injured in 2008. In addition to the day-to-day struggles with Tom’s behavior, Ms. Marcum faced barriers within bureaucracies of the Department of Defense and Department of Veteran Affairs as she advocated for services for her husband.

Recently, stipends for family caregivers have been approved following the lobbying efforts of the Wounded Warrior Project. The current program only extends benefits to soldiers injured after September 11th, but it does offer approved applicants a monthly stipend of $1,600- $1,800 in addition to access to health insurance and counseling. The program now covers approximately 3,000 family caregivers. It’s a step in the right direction. But we know that there are more injured soldiers in need of care, more families awaiting their return and 1.5 million new civilian brain injuries each year—whose families are not eligible for this program.

The question remains: Who is going to care for the caregivers? In a time where everyone is focused on healthcare costs, we are not paying attention to the true costs of a lifetime of disability. By providing financial support and healthcare resource programs for family members who care for a person living with a brain injury, we may be able to take care of more than one person.

About Rolf Gainer Ph.D.

Dr. Rolf Gainer is the founder of the Neurologic Rehabilitation Institute at Brookhaven Hospital in Tulsa, Oklahoma as well as the Neurological Rehabilitation Institute of Ontario, in Toronto, Canada. Dr. Gainer is a psychologist with more than twenty-five years of experience in the treatment and rehabilitation of individuals with brain injuries and a dual diagnosis. Dr. Gainer has designed and operated innovative rehabilitation programs in the United States and Canada for individuals who have been regarded as difficult to serve. He is currently involved in conducting two outcome studies related to the long-term issues faced by individuals with brain injuries and a dual diagnosis. He has presented papers throughout the United States and Canada in many professional conferences and educational forums.

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