Crisis Center
A Family's Perspective
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The purpose of planning is to avoid surprises, but with brain injury surprises are inevitable. You will still need to plan to get a larger perspective on how your loved one’s brain injury will affect your family. Just know that there will be many surprises and they often come in cycles—there will be a crisis then a period of calm. Long-term planning is still a family’s best tool for dealing with all the ramifications of brain injury, the expected and the unexpected.
When a brain injury occurs, families often are overwhelmed by the loss that their loved one has experienced. In response, families may spend a great deal more money and energy in the early weeks and months immediately after injury than they would if they had taken a longer view. A long-term perspective should be the foundation for future planning.
My son was injured over a decade ago as a 16-year-old new driver. Looking back on our journey, we haven't always been prudent with our energy, but with counseling and support from the brain injury community, my husband I are making better choices and becoming more sensible. We made the mistake of being in denial for too long and started the process of planning later than I would recommend. Planning encourages families to look at a range of different possibilities for their loved ones in the future—even those that are most dire—and to prepare themselves mentally, physically and financially as best they can for those outcomes. If families can be more accepting along the way, they can better resist the rush to spend all their resources on a quick, short-term fix.
Rehabilitation is a big factor is future planning for someone with brain injury. Unfortunately, in the United States, our insurance system tends to provide coverage for a relatively short period of time after the injury. The person with brain injury is at the height of spontaneous recovery then, but because they are also in the midst of denial and coping with significant losses, they may be emotionally unable to maximize rehabilitation opportunities. Later, when they are more mentally prepared, motivated and even appreciative of therapy, the funding/insurance coverage may not be there for them. Trying to obtain insurance coverage for therapies following psychological adjustments can be one of the more frustrating aspects of recovery. Recently, doctors, therapists, persons with brain injury and their families advocating for well-timed therapy (as opposed to front-end therapy) have been more successful in gaining services months, even years after injury. But families have to know to ask and if denied, appeal.
Perhaps the most important fact for family members to keep in mind is: brain injury is a long-term situation for both the one injured and the family. The sooner decisions are made from that perspective, the better.
Sue Edmonds is a former elementary teacher who has taught in kindergarten through fifth grades in both public and private schools. She received a B.A. from Drury University in Springfield, Missouri and a Masters in Reading Development from Emory University. She has two children, Brian and a daughter, Katherine. Sue lives in Atlanta with her husband Larry, an epidemiologist at CDC and is a full time caregiver for Brian, who sustained a traumatic brain injury over ten years ago.