By Judith Falconer, Ph.D.
You survived the physician telling you he would not live through the night. You survived waiting for him to wake up from a coma (and maybe being told that if he did, he would be a vegetable). In the rehab center, you watched him struggle to re-learn the simple things we all take for granted: sitting up, walking, eating, bathing, talking. When he was discharged from the rehab center, you re-arranged your schedule to take him to therapy and all those medical appointments. You noticed that his rate of progress was slowing down but you could wait; you’d do whatever it took to make him like he was before.
But no more therapy is scheduled and there doesn’t seem to be any progress; maybe he’s even lost some of the skills he learned during rehabilitation. There are times when you see a glimmer of the person you used to know: that wry sense of humor, the winning smile, maybe he even remembers an incident from before the accident. Other times he is an unlikeable stranger masquerading in the body of the person you knew: he has angry outbursts, messes up the house, repeats the same stories, asks the same questions, forgets things from one moment to the next, and never gets things done unless you’re there every minute.
You ride an emotional roller coaster: guilt, depression, anger, frustration, regret, and hope. It dawns on you that your whole family has been injured, not just one person. You’ve all had to change your lives. You can’t even remember what it used to be like. You wonder if things will ever return to normal, if there’s anything you can do to change the way things are now. You’re willing to try anything but don’t know where to start. You’re afraid to “rock the boat,” fearing anything you try might make things worse. If only there were a magic wand you could wave, a miracle pill you could take. Where’s that fairy godmother when you need her?
When you reach that point, you may be ready to start your own program to make things better. The following information may help guide you in your quest for a more normal life for you and all members of your family, including the injured individual:
Objectively analyze the strengths/weaknesses of the injured person: Physical and medical limitations are generally quite clear-cut and can be explained by physicians and therapists who have been involved in the rehabilitation process. As most family members soon learn, however, physical and medical limitations are relatively easy to understand and work around. It is cognitive and behavioral deficits which prevent return to a normal life for the injured individual and it is these deficits which cause stress for family members on a daily basis.
Two of the most common reasons for problems after a head injury are (a) overestimating or underestimating the cognitive and behavioral abilities and limitations of the injured individual and (b) failure to understand the practical implications of deficits. Expecting too much from the injured individual frequently causes significant behavioral problems; expecting too little may also cause behavioral problems but, more importantly, limits recovery and the acquisition of new skills. At either extreme, the stress experienced by family members is exacerbated and increases over time.
Neuropsychological evaluation is useful in determining which cognitive functions are intact (or nearly so) and which are impaired. Unfortunately, family members only occasionally have an opportunity to discuss test results. When such discussions do occur, the words used by the neuropsychologist may be quite technical and family members may not understand how things like “impaired initiation”, “left neglect”, or “apraxia” might be observed in daily life. If you are able to discuss results with the neuropsychologist, make sure you ask for specific examples of how you might see the deficits in daily life. If you don’t understand (or you don’t agree), ask for additional examples. Make sure you have a clear picture of how the test results apply to daily life before you leave the office. Ask what specific activities the injured individual should be able to do independently, which can be done with assistance, and which are probably totally beyond current ability levels. Ask how you can structure activities to maximize independence. Get the information you need to develop a reasonable plan to maximize recovery.