By: Walter Harrell, ph.d., abpp
Long-Term Planning for Individuals with Brain Injury and Other Chronic Disabilities was produced to be a resource for families and professionals.
It was written to be a guide to the incredibly complex maze that individuals with chronic disabilities, their families, and professionals must navigate as they plan for the future. Those of us involved in services related to long-term care are in a sense “stewards” of life-time care plan, which requires us to see the “big picture” as we gaze down the road on the long term issues.
Family members oftentimes struggle with the emotional issues associated with accepting the role of guardian or participant in financial and long term planning. They may feel reluctant about assuming the role, which can include complex bereavement surrounding the unexpected and unwelcome events that have changed their life’s course as well as their loved one’s.
Family members in this role often experience varying degrees of stress, anxiety, and depression. They may ask, “Why me,” or “Why now?” Some of these feelings and thoughts can make it difficult to communicate effectively with medical professionals and organizations, and to make decisions about the future. Families often find it difficult to remember information taught by rehabilitation professionals, or conversations about long term planning that have to be addressed. There is ample physical evidence of stress in family members, including headaches, muscle tension and aches, gastrointestinal problems, weight gain or loss, and fatigue. The demands of caregiving may, at times, seem difficult if not impossible to meet. Personal needs are replaced by the overwhelmingly complex medical, financial, and legal maze that must be navigated on behalf of the person with a disability and thus, become a distant last in a long list of priorities.
What follows in the Guide is a compilation of resources designed to help one navigate not only the practical aspects of decision-making for long-term care needs, but also suggestions about how caregivers can care for themselves in the process. The truth is that regardless of how organized a family is, how determined they are to make the best possible decisions, and how focused they are on providing excellent care for their loved one, we must consider how to help them care for themselves in this process. The scope and magnitude of the problem is staggering, especially when you consider the sudden onset of a chronic disability, such as a brain injury or other cognitive disability.
Over the past 25 years our society has made great strides to better accommodate physical disabilities (handicapped parking, ramps, transfer bars, visual impaired & hard of hearing technology, etc.), but has made limited gains in reintegrating individuals with cognitive, social, and/or behavioral deficits back into society. In addition, support services and resources are consistently cutback due to budget shortfalls and lack of political will to care for individuals on a long-term basis.
Part of the problem is that our society, and funding resources, to a large degree do not recognize brain injury as a chronic disability. A brain injury quickly evolves from a medical phenomenon to a long-term social issue. Just as we do not expect someone with a spinal cord injury (a permanent neurological injury) to one day get up from their wheelchair and walk, we should not anticipate someone with a severe brain injury (another permanent neurological injury) to function well outside a supported, therapeutic environment (“contingent functionality”). A severe brain injury requires a long-term approach to addressing the associated chronic disabilities, and a focusing of resources on providing long-term therapeutic support systems.
There is no question that living with a brain injury is expensive, time consuming, and emotionally challenging. Brain injury must be recognized as a chronic disability if we are to ever develop the appropriate resources, services and awareness necessary to bring the “silent epidemic” into full public awareness. That will require the concerted effort on all of our parts; family members and professionals alike. What can we recommend to our families that help clarify the altered role they must play and the path they must walk, without diminishing the hope for a better tomorrow?
We cannot change a person’s chronic disability, but we have an important role to provide ongoing support and education, which will allow the family to help provide for their loved one to the best of their ability. The demands of daily life associated with chronic care giving continue to mount; for professionals as well. We must all take time for ourselves; to visit with a friend, talk to a counselor, take a walk or a long bath, join a support group, or any act of participation in the larger community of support that is out there. Doing some or all of these things—and others that are useful to you—on a regular basis is a difficult choice for many, but a discipline that should be maintained so that the demands of giving can be met.
Part of taking care of yourself includes recognizing and acknowledging the long road ahead, and planning for the future. The problems and challenges associated with chronic disability do not go away. Professionals need to see beyond their discipline and limited timeframe of involvement and recognize the larger, long-term issues families face. Families and all caregivers need to take care of their mental, emotional, and physical health so that they can continue to be effective caregivers. Part of that process is for all of us to get involved in advocating for public policies that support long- term community-based resources for individuals with chronic disabilities, while also personally taking the necessary steps for long-term legal and financial planning. We hope this guide serves to clarify some of steps needed for long-term planning and how the needs can be met.