Caring About the Adult TBI Survivor

Printer-friendly version
by caregiver, Carolyn Roy-Bornstein

My son Neil was seventeen when he sustained a traumatic brain injury at the hands of a drunk driver who hit him and his girlfriend Trista as they were walking. Trista was killed. That was ten years ago. Initially helpless in an intensive care unit, he had no choice but to allow his family to take care of him in a way that had not been necessary since he was a small boy. His father carried him to the bathroom. His brother fed him smoothies from a straw. I brushed his unruly curls, massaged his muscles and helped with the exercises his therapist recommended.
Back home, I spotted him like a gymnastics coach as he teetered weakly on his crutches. I made charts for his medication schedule, terrified I would overdose him on pain meds or cause a seizure if I missed an anti-epileptic pill. I kept track of his oral intake and urine output, afraid that he would get dehydrated.. Later, I arranged for neuropsychological evaluations, then went to school meetings to advocate for academic modifications based on those results. I drove him back and forth to school, physical therapy and counseling sessions.

At a time in his life when most young people are exerting their independence, moving away from their families and aligning themselves more with peers than parents, my son was thrown back, against his will, to a time of more vulnerability and need. Initially he acquiesced readily, taking advantage of the held hand, the shoulder to lean on, the gripping embrace of family. But eventually he began to bristle at our offers, wanting to rejoin his more independent peers.

College was a constant struggle for Neil. His memory difficulties made academics hard. He utilized every form of extra help available to him and still just managed to eke out mediocre grades, far less shiny than he was used to. But his social life also suffered from his anxiety and depression. He avoided people, unsure if he knew them. If he did know them, he was unsure of the context, who had introduced them, their names.

Today he is in a better place. Ten years have passed. He is in a PhD program for mathematics education. He still suffers from anxiety and sees a therapist from time to time. But he’s coping better. He has also learned to advocate for himself. He recently petitioned the disabilities office on campus for extra test-taking time and a distraction-free environment. He has a long-term girlfriend, Jen, his first since Trista died.

But I still worry about him. As every parent of adult children knows, they will always be our babies.  As the saying goes, “You’re only as happy as your saddest child.” Yet the brain injury adds a layer of complexity to the angst. I worry about Neil in a way I don’t his older brother. I mine each conversation we have for hidden signs of depression or anxiety. With Jen, I have an ally. She sometimes acts as my eyes and ears. When Neil doesn’t answer my phone calls, I can text her. When he seems to be having a rough day, she often knows why. She is also my cushion and comfort. Or I should say, Neil’s. When we are out at family gatherings--which with our large clan automatically constitutes a crowd which automatically makes Neil anxious—she keeps up their end of the conversation long after Neil’s hood has come up over his head, long after he’s checked out. They hold each other’s hands under the table, I can see, each comforting the other.

Caring for Neil has morphed into caring about him. His girlfriend has taken over as his main source of support. And that is just fine with me.

[Carolyn's caregiving story was excerpted from her book, Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries: 101 Stories of Hope Healing and Hard Work.]


Progression of Care:

Health Issue or Illness:

Caregiver Roles: