As more people survive severe brain injuries and research becomes available regarding individuals at the 10 to 20-year interval following injury, we are seeing information about “the graying of brain injury”. For those of us who live and work with TBI survivors, our experiences are a practical and evolving research project.
Many of these people live on their own, with family members or in congregate living situations. For those individuals who were injured between ages 20 and 35 and who returned to living with their parents, we are now seeing those parents enter into retirement age and address their own health issues and mortality.
In a recent discussion with the 81 year-old father of a person with a brain injury, the father spoke to me of his growing concerns with the problem of who would make decisions about his now 51 year-old son in the future. His son,who is 18 years post-injury, had experienced a medical decline about two years ago and now has stabilized and returned to his long term care program. I remember the father’s issues distinctly from that period and the degree to which he participated daily in care decisions and visits to his son while he was in acute medical care. I admired his devotion to his son and to his needs and I remember telling staff that a child couldn’t ask for a more loving and concerned parent.
“Who will be there for my son when he can no longer do that job?” the father asked me. I offered to talk with his other adult daughter about her brother’s needs, but he was concerned that she wasn’t prepared or experienced enough to make major decisions for him. He expressed to me his fear–not of her competency or love of her brother–but of the overwhelming level of committment required. We agreed that I would talk to his daughter when he was ready, but so far six months have passed since we last spoke.
In Brain Injury Professional, Volume 2, Issue 2, of the North American Brain Injury Society, the articles address with the long term issues of aging with a brain injury. The authors are well known rehabilitationists who have focused on the important issues of maintaining health, family issues, independence and long term healthcare implications. They advise us that the research into aging with a brain injury is sparse, but slowly evolving. Unfortunately, research is this area will occur after most problems are confronted and resolved by the individuals living with a brain injury and their family members. Eventually, pragmatic solutions will be developed in response to problems, and over the course of time will be implemented.
Today, the issue of aging remains a largely unattended issue for TBI survivors, so I encourage researchers and advocates alike to begin contributing to the discourse.