I recently had the opportunity to speak at a conference for medical professionals, mainly neurologists. What a gift to offer a window into the world of brain injury. Several in attendance shared they had never heard a family’s story from a caregiver’s perspective.
I had forty-five minutes to speak, and while there was ample time there was a vast amount of information to convey. The truth of brain injury can be harsh. Even amongst professionals who carry in-depth knowledge of the brain, I felt vulnerable. At the conclusion a wise gentleman asked, “Looking back at the beginning of your journey, what could have been done on our end to help you?” (I’m paraphrasing.) Taking a deep breath, I realized the question was an open door. I wasn’t sure I felt fully prepared to walk through it.
There is complexity in revisiting the beginning of our story. Reflecting on those weeks feels overwhelming, not necessarily because they have passed, but because they aren’t over. They’ve evolved into something different. Less beeping. New chaos. Not as many tears, and certainly not the same emotional support. I didn’t know it then, but we were adding a powerful dynamic to our family.
Brain injury is not a crisis to be lived through and then talked about a few years later as having overcome. TBI was just beginning to make its place in our lives. It was encompassing, invasive, and involved.
Minutes fly by when you are discussing the most horrific event in your family’s life. I wanted every word to carry an impact that would reach the mind and heart of my audience. I experienced a sense of urgency. The room was filled with people who have dedicated their professional lives to understanding the science of the brain. I had a responsibility to share from a different place…the heart of a mother.
I’ve pondered this question since then and want to share five qualities of healthcare providers that left an impression on me.
I appreciated when it was understood that Taylor was more than a young man lying in a bed in intensive care. He was a son. A brother. A friend. A nephew. A grandson. A hard-worker. He was adventurous and witty.
It was heartwarming when someone on the medical team asked personal questions about Taylor … his hobbies, his likes, and his character — not just the body being repaired. Their curiosity brought us back to who we were missing.
Get curious about your patients, and who they are outside of the hospital room.
There were times when the space between being the professional and being the patient’s family disappeared. We did not always need medical terms, or to only listen to the beeps and alarms occupying intensive care. We needed someone to understand that the place we found ourselves was cruel and unexpected. We needed to catch our breath. We needed people to be with us in that dark moment. Connection meant the white coats and scrubs would have to fade into the background, and humanity had to step into the forefront. And that happened, again and again.
Practice genuine connection.
There were two younger male nurses who were often assigned to Taylor. They were exceptional. They might place a hand on my shoulder and say, “You remind me of my mom.” They would ask how my other children were, and they took the time to listen. They were present. I realize it must have been challenging for those young men. But they made a choice to care, which impacted my own emotional balance.
By seeing their (own) mother in me and wondering what it might be like if this was happening in their family, compassion flourished, as did trust and true empathy.
Walk-in compassion remembering brain injury can happen to anyone at any time.
Patients and their families are vulnerable, afraid, exhausted, and unsure of what brain injury means. I found myself looking to professionals for answers, which was anxiety-producing. But they had something I didn’t have. They had witnessed brain injury, and how family support affects recovery. Each time a doctor, nurse, or therapist acknowledged our strength and courage it filled me with more of the same.
Care providers are participants in a relay race. There must be recognition of the fact that a family and survivor might be running the race for the rest of their lives. Taylor’s initial trauma team was excellent in not only caring for Taylor, but also for us. We were educated enough, without being given too much information. They gave us space to be angry, sad, and to even lose our composure at times. But most importantly, they cheered all of us on in the most important race of our lives.
Remind patients and their families that they are brave, and courageous.
Commitment to change.
As Taylor moved into phase two, we were treated with gentle firmness. We understood leaving the intensive care to be as scary as hell, but also vital to his ongoing recovery. The change was both painful and beautiful. Learning to transition was critical. A compassionate team explains the process and lets it settle in.
They communicate clearly with hope, “You can do hard things.” They help us grasp that without change there cannot be forward motion. Embracing change is scary and walking with someone in it is compassion.
Be willing to walk with families through their transitions and understand how frightening each step can be.
To those involved in care, I’d like to open the doors for more communication between providers and families to take place. We have a lot to teach each other in the ongoing classroom of traumatic brain injury. To those caring for their loved one, don’t be shy about sharing what you need, and speaking up when something works well, or when it doesn’t.