TBI and the Family

Posted on Wednesday, March 2, 2016 by UVM Health Network - CVMC

I can still remember laughing as we pulled into our garage, talking about how beautiful the snow was on the grass and how clear it was that night. We had just returned from dinner, and my (now) husband and I were not yet married. I was in graduate school, fresh-faced and learning about what it meant to be a speech-language pathologist (SLP). My phone buzzed and I pulled it out as I walked into the stairway, still laughing about my spill of food at the dinner table. My face went slack as I read the message that the father of one of my best friends had fallen off the roof and was being transported to Burlington due to the severity of his traumatic brain injury (TBI). The text was so brief and so urgent, that my heart started immediately racing. I will never forget the look my husband and I exchanged as I read him the information.

At that point, I had known this friend for less than a year, but the closeness of our friendship was unspeakable. The initial course was uncertain; a part of his skull was removed due to the bleeding and excessive swelling. He was minimally responsive at the time, with a breathing tube inserted, and it was on and off uncertain if he was going to live. This emotional roller coaster was taxing on everyone, but especially for my friend who is a wonderful nurse and also incredibly close to her father. While she played both roles effectively, it was draining on her to try and carry on her everyday life while adjusting to the new axis that her world was now spinning on.  While I had learned in school about what a TBI meant from a neurological and a physical standpoint, she and her family were starting to teach me what a trauma meant for the family structure. With all of their lives hanging in a web of uncertainty, they relied heavily on open communication from nurses and doctors about courses of treatment. They looked to therapists to give an honest and caring approach to management of his trauma.    

Finally, he made it out of the woods and was stable. They began the long road of recovery. Initially, it was this feeling of relief as he had minimal physical impairments. He was soon able to walk with a walker, eat, and talk, which in the short term fostered a feeling of gratitude and thankfulness. At the same time, the family was just beginning to recognize the external impacts and uncertainty associated with potential long term recovery, loss of income, healthcare needs, changes in family dynamics and roles, and many other topics. 

Then came the crushing awareness of the personality difference, the notable changes in cognitive skills, and decreased inhibition. Often the physical changes are the most obvious and clearly let everyone know that an injury has happened, but the cognitive, language, and emotional changes are the ones that really hit home with how things function and how we interact with other people.

The hardest part, that I don’t think anyone anticipated, was the grief and the depression. TBI survivors and their families do not want to believe that things may be forever changed and for everyone, the personal process and time needed to reach a point of acceptance is different.  They experienced a sense of loss of the person they had before, senses of stress and  grief associated with his not being able to work and its accompanying financial uncertainty , and the troubling realization that life would never be the same. It was felt by both my friend’s father and the whole family structure. Some people think that grief is only experienced when there is a loss of life, but grief is also felt (and should be honored) when skills or abilities are lost and questionable to return. Not being the same person as you once were is a grieving and rebuilding process for the patient and the family. Not having your father be able to function as the same person you grew up with is a process of understanding, grieving, and moving forward in a different way. This grieving and processing is a constant motivator for me when I am working with families and patients. I encourage families to reach out for support while being open about the grieving and to acknowledge that it is a long, hard process that can feel never ending.

My friend and her family have done a beautiful job of moving forward with their lives, but the ripple effects of the TBI still shake the structure every now and then (over 6 years after his injury). My friend’s father prior to his TBI was fantastic with money, management, and organization/processing. He was always a calm rock of stability, quelling doubts when the family needed this. The TBI altered that, affecting his brain’s threshold of frustration/stress tolerance, increased fatigue, his ability to focus, and his ability to quickly and accurately process lots of information. They have all accommodated it and they have come to recognize signs and triggers of stress and fatigue while continuing to adapt by learning strategies, therapeutic approaches, and making changes to approaches, but I know it can still frustrate each of them in its own way. Fortunately he has made a magnitude of improvements and has found ways to resume a number, but not all, of his prior activities, which I know is an area of frustration for him.

What all of this taught me was that the family structure is shaken to the core after a brain injury. This has shifted my perspective on therapeutic approaches and changes how I create goals. When I establish treatment plans, I focus not only on patient needs, but family needs and functional daily needs. What will make them feel more competent, more motivated, function more independently, and assist with the family structure. I also think about making sure I am checking in with the patient and the family as people, not just as patients, and honoring the very large changes they have gone through while helping them maximize both patient and family recovery in finding the new normal.  Hour by hour, day by day, we walk the very long road together so they know they are never alone.

This article was read and edited by the family and survivor of the TBI and some words are their own. Their support for this article writing was overwhelming.

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