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Traumatic Brain Injury
Creative Rehabilitation For Brain Injury. Part 1: Concussion
Family-centered ways to create strategies to assist recovery
Posted May 31, 2015
When I first started out as a neuropsychologist there were no facilities, even in New Zealand’s largest city, specifically set up to work with people who had suffered some sort of brain disorder that required months of rehabilitation. Often if they were very disabled they would be kept as inpatients in the acute neurology and neurosurgery wards for many months, and at least whilst there received help from physical therapists and sometimes speech and occupational therapists. When they were about to be discharged, a social worker would see them and their families. And that was that. If they had suffered a significant head injury or stroke, the chances were high that they and their families would be left floundering, with all the obvious consequences. I occasionally became involved when they reached a crisis point and found their way to our clinic at the university. I would try and provide some sort of support therapy, using a family centered approach, and connect them into whatever support systems I could find that made sense for them in the wider community. By delving into the research on family therapy, and marrying that with my knowledge of cognitive dfficulties, I evolved a rather seat-of-the-pants type, individualized program for the family that I hoped would help. Often the results were very satisfying, and I came to believe in this approach. At its center was the idea that we would set up a support team for the brain-damaged patient (I’ll use the more empowering label ‘client’ from now on) including all willing family members and friends. Together we’d come up with ideas to assist the client in the various cognitive, psychological and social areas required. In our meetings I would be the facilitator and educator, and the family would become the therapists. As time went on they became more and more skilled at working out what to do, until I was no longer needed. If they occasionally needed some help with a particularly difficult problem they would come in for a booster session, although often a phone call with me would be all that was needed to give them fresh ideas.
I still believe this is a very productive way to conduct rehabilitation, especially as rehabilitation for some clients—for example those with severe head injuries and strokes—is a lifetime process, and no rehabilitation therapist or institution is going to be there for the client forever. Family and close friends, however, hopefully will be. The other important aspect of this ‘model’ is that right from the beginning the support team agrees that they will share in the rehabilitation. So often if this is not made explicit, one family member, usually the mother, wife or daughter, becomes the primary support person, as everyone else gets tired and bored with it all and fade out of the picture, leaving the primary person to burn out.
Now days in New Zealands’ main centers, and likewise in cities in the US and UK, there are many excellent live-in and day rehabilitation centers specifically for head injured people or stroke victims, and if a client is lucky enough to get into one of these, the family rehabilitation team is not as necessary. But there are still numerous smaller towns and rural situations in all countries where there is nothing much available, so back we go to the family team idea.
'Creative rehabilitation' is the label I use for the sorts of things the family team comes up with and puts into action, and in this and the next few posts I am going to take you through a few examples from my own practice. More details about these cases can be found scattered through my books, Fractured Minds and Trouble In Mind. These examples are not meant to be copied particularly (although if they make sense for your family member, or for your client, if you are yourself a therapist, by all means use them, or add to them). Hopefully these examples will give you the inspiration to come up with your own ideas specifically targeted to your client and family’s interests and abilities. We all know that when we are interested in something, it is much easier to keep doing it, practicing it etc, than if we have to do it just because it is good for us. Rehabilitation can be boring and lonely and that is what we need to steer clear of. If as well as helping a client with improving on a specific task we can at the same time strengthen other important life skills that have been put in jeopardy by the brain disorder (such as keeping friends) then that will enrich the whole experience for everyone. For example, if the primary aim is to provide the client with memory strategies that will help him manage what used to be a simple task—remembering the three items he has walked to the corner shop to buy—then if we can add into that some social interactions—walking with a friend or sibling, and having the shop keepers involved as well so that they know to spend a few minutes having a conversation with him, that achieves two purposes and is likely to be more rewarding for the client, as well as engaging more and more of the community in the recovery process.
In this first post I am going to start at the easiest end of the spectrum of brain disorders, a client suffering from a mild head injury which has led to a post concussional syndrome. The post after that will give examples related to severe head injury rehabilitation, Post 3, stroke, Post 4, dementia, Post 5—we shall see!
So here is the example of Rachel (you can read about the causes and symptoms of mild head injury and the post concussional syndrome (PCS) in my earlier Psychology Today post on concussion, and more details about Rachel’s story in the chapter titled “The Unseen Injury: Mild Traumatic Brain Injury” in my book Fractured Minds.) Rachel was a 14-year-old highly intelligent and motivated student when she suffered a concussion in a skiing accident. She lost conciousness for less than a minute, but as she felt dazed and a little confused and could not remember much for about four hours after the accident, she stayed home and rested for a week before returning to school. But she struggled with the demands of being in the top class, and soon dropped math, one of her best subjects. Art and music which were pretty laid back, became the only subjects she looked forward to. At home she became moody and depressed and stopped going out with her friends. It took two months before her mother (she was divorced from Rachel’s father) took her to see the family doctor, and he referred her on to me. For the first time Rachel revealed (to her mother and sister, as well as me) that she believed she had suffered serious brain damage because what else could explain her inability to think clearly any more, and her terrible fatigue? She had had some suicidal thoughts but had not considered ways to do it.
I put into place the standard rehabilitation programme for PCS, including giving Rachel (and her family) all the information she needed to reassure her that although she was unlucky in being one of the small proportion of people who suffer a long period of difficulties after a mild head injury, her chances of a complete recovery over a few months were extremely high, if she followed the plan I set out. This was an enormous relief to her, and Rachel returned for three further individual psychotherapy sessions to help her gain control over depression. During this time she was encouraged to pursue recovery more actively by pacing herself carefully at school, by attending only those classes she felt she could cope with comfortably, and by spending as much time as her body (and brain) demanded resting and sleeping. She and her mother explained PCS to her teachers and friends, who were supportive.
Rachel's mood lifted, and she was given a neuropsychological assessment, which demonstrated a clear picture of a typical PCS; especially poor concentration leading to difficulties remembering new information, debilitating fatigue, and hypersensitivity to noise. Following this assessment, we decided she should not return to school for the few remaining weeks of the school year. Her friends' end-of-year examinations were coming up, and they were working hard preparing for them. Rachel found it stressful not to be sitting the exams, and she felt she was "getting on her friends' nerves.'' At this stage Rachel was having difficulty sleeping at night; typically, she would nap in the afternoon, feel wide awake at night, and finally fall asleep at about 4:00 a.m. Various interventions were attempted to reestablish a normal sleep pattern, but success was minimal. Unable to sleep, Rachel often awakened her mother to talk, so her mother was clearly suffering from sleep deprivation as well and was understandably worried about Rachel's apparent lack of improvement. By this time, some 12 weeks after her head injury, Rachel was doubting that such a small bump on the head could cause so many problems and thought that she must be going crazy. In fact, she admitted she had been reading up on schizophrenia and how it often started in adolescence, and she was terrified that this was what she had. I helped Rachel to explore this possibility, and she decided that the PCS might still be having an influence but that her loss of energy and emotional reactions to losing her ability to do well at school had resulted in her feeling depressed and losing her self-confidence. She decided she wanted to give her mother and sister a rest from worry and to give herself "some fresh air.'' As she commented, "I feel stagnant and useless and dead.'' So it was decided that she should stay with her father and his extended family in a rural seaside town for 10 weeks until school began again.
Rachel returned to Auckland as planned at the beginning of the new school year, and physically she looked much healthier and happier. Her holiday had been a great success, and she said she had slept well, raced around swimming and boating with her cousins, and thought not at all about schoolwork. Her headaches had disappeared, and she found she could concentrate throughout the reading of an entire book. Getting her right away from the busy, noisy city, and the environment that was associated with school success was the key. It was decided to repeat some of the neuropsychological tests before Rachel started school again. Her approach to the tests was more energetic, and she managed a three-hour session without tiring, a major leap forward. Her scores had all improved and many were now back to normal for her, which was in the 'Superior' range. However, there was still room for improvement on a difficult test of complex information processing, indicative that her recovery was not complete, but it was decided that she could return to school, mornings only at first, and with individual tuition in some classes (Math and French) to help her make up for the classes she had missed. A careful social schedule was also arranged so that she would not become overtired and return to poor sleep patterns. She was permitted a nap in the afternoon if she needed one but was instructed to set her alarm so that she did not sleep for more than one hour. A 'good sleep habit' program was instigated immediately to train her to relax before she went to bed and to use her bedroom for sleep only. She was prepared in advance for the possibility that her recovery pattern would not always be smooth and that at times she would feel herself slipping back. This was normal and did not mean she was not recovering. She was given self-help strategies to get her past these possible difficult 'patches.' Rachel found that she could cope with school, and her sleep patterns stabilized. She gradually built up her sporting and social activities. Within six weeks she was back in her regular class and, as she said, "going on nearly all six cylinders.''
The "creative rehabilitation" in Rachel’s case was not so much in the basic plan of rest and return to school gradually, but rather in the ways everyone (her mother, her father, her siblings, friends and teachers) all banded together to support Rachel, and in the activities she was encouraged to continue with (art and music which she loved). The creative strategy was the decision to take her out of school completely and let her run wild during the school holidays with no expectation of doing any catch-up schoolwork, a strategy that would appear rather drastic to some people. Her mother in particular found it difficult to let her go away to her father’s rather carefree house for so long, but to her great credit she went with it, and was happy she did when Rachel came back “her old self.” And Rachel learned a life-long lesson. As she said “I have learnt something from it all. I'm not going to get so tied up in my work and having to be top of the class again. I really think if I had not cared so much about my work, I would have not got so depressed and given up so quickly, and I would not have had such a problem with dropping behind for a while. It was all or nothing for me I think, and that was the problem. I couldn't cope with doing it all, and doing nothing made me think I had lost it.”
Rachel went on to get an excellent university degree with ease, and is today happily married with two children and a shining career as an architect (part-time by choice while her children are still at school!)
