survivors-families

The Long Road Ahead

based on "Aging and Long Term Needs Issues for the Family of the Individual with Brain Injury" by Linda G. Dierking, RN, BSN, CRRN, CCM

In the last 25 years, the number of people facing moderate to severe traumatic brain injury has increased dramatically. At the same time, our health care delivery system is in a transition to "managed care." In the future, we will see more of an emphasis on... deciding the priorities with regards to treatment, whether the projected "outcome" of a treatment will justify the costs, and how much treatment is acceptable and not excessive.

For too long, our health care system has deflected questions about the "value" of treatments. How much therapy is enough but not too much? It is mostly based on "projected outcomes" which means, "how much recovery is to be expected?" Only now are we beginning to have some long term studies on the impact of brain injury. Unfortunately, there are not many long term rehabilitation programs available nor affordable without enough insurance. Most of the long term care is assumed by a family member. The family plays a major role in rehabilitation therapy and ultimate outcomes.

What Can We Do?

Plan as early as possible for the discharge from a rehab setting of your loved one (or yourself, if you are the one injured). Anything you don’t understand, be sure to ask about. If certain words or ideas are unclear to you, make sure they are explained in a way you understand. You are an important part of the recovery team.

Stay involved with the professionals in the field of brain injury. Your input is important for them to understand the level of recovery and to make accurate recommendations. Visit your family physician for an introductory (and ongoing) checkup and bring any related written material you come across. Helping them gather new information will help them serve you better.

Age will bring increased difficulty with various thought processes. There is a normal decline in everyone but decline may be more pronounced in those with brain injuries. It may be difficult to accept an increased need for support in those who have worked so hard for independence but, over time, this may become a reality.

Get involved with support groups, advocacy groups, community programs, and if available, day treatment programs. It is time to establish your "lifelong living" goals and to obtain the highest level of happiness and productivity possible. Set challenging, attainable goals. Pace yourself for the "long run"; this is a lifetime journey. Let those around you provide help and support. This is a long term commitment.

Source: 1996 Resource Journal

Address information

Brain Injury Alliance of Kentucky 7321 New LaGrange Road, Suite 100 Louisville, Kentucky 40222