National Brain Injury Information Center Serves Community Throughout Coronavirus Pandemic

By Greg Ayotte, CBIST, Brain Injury Association of America

Through its National Brain Injury Information Center (NBIIC), the Brain Injury Association of America provides information and resources to persons with brain injury and their families. The NBIIC Information and Resource (I&R) professionals support the brain injury across the country by providing emotional support and state-specific information tailored to an individual’s needs. An effective I&R professional is someone who is sympathetic to the person reaching out for help, without getting too involved emotionally. However, there will always be cases and calls that impact us more than others. In general, we don’t always know the impact of our suggestions and information, and we learn to live with that ambiguity. The challenges of COVID-19 are altogether different; they impact both the staff and the people who contact us for assistance.

Having a loved one sustain a brain injury affects the entire family. Normally, the family is an essential part of the rehabilitation team. They visit their loved one, share insights with health care professionals, and discuss discharge options with the team. Family visits not only help the person with the brain injury, they help the family and treatment team understand the person with the brain injury a little better.

The restrictions that COVID-19 has placed on visitation have created more stress for both rehabilitation professionals and families. Families now have to rely on reports from the rehab team about their loved ones. Discharge planning options are limited, and the family is often not able to visit potential discharge sites and see programs. This new dynamic creates a more challenging and stressful environment for both families and I&R professionals who are trying to help families. Normally we can offer suggestions about community resources like support groups or outpatient rehabilitation programs; in many parts of the country, these resources are either not available or significantly reduced.

Additionally, there are people with brain injury that contact us looking for information about the risks of COVID-19 infection for a person with a brain injury. Families want to know if there can be any long-lasting neurological issues. We refer them to BIAA’s COVID-19 Resources page, and we also tell them that the science on this is still changing. There are many unknowns at this time about the long term implications.

The staff of NBIIC is impacted by COVID-19, too. They may be dealing with their own personal stressors: children who are no longer in school, worrying about parents that live alone, or having partners who have lost their jobs. NBIIC staff have to work to set those concerns aside and focus on assisting the families who might contact them for help. There are days when it’s just harder to do that.

We are used to dealing with ambiguity, but not on this scale. I find myself more easily mentally fatigued at the end of the day. There are days I just want to sit and watch movies, eat popcorn, and not think. There are days when I am determined to get something done. I wish I had some insightful comment to help others. I wish I had the answers to the questions from families about COVID-19 and how they can manage all these unknowns.

The best advice I have heard is from a caller in Texas. Her mother sustained a severe brain injury, and the rehabilitation team was working to evaluate her level of responsiveness. At the time of the call, her mom was in a coma, and the team was talking about DNR orders and if they should remove her from the ventilator. She had not been able to go see her mom, so all the information she had about her mom’s condition was second-hand from the rehabilitation team. As I talked with her about the questions to ask the rehabilitation team and told her what information I would be sending to her, she stopped, took a deep breath and said, “I know I will do what is right and what is best for my mom and my family. I just need to focus on getting myself in a place where I can listen to my inner voice to help guide me. It is getting harder to hear that voice, but I know it’s there. I just need to stop, take care of myself, and give myself time to listen.”

That is what we try to do each day. No matter what is happening, I&R professionals try to do their best to take care of themselves and get to a place where they can listen and share their expertise with those who contact them.

BIAA’s NBIIC may exist to serve patients and families, but it is here to serve you, too. Refer your clients to NBIIC for state-specific information and resources to help them live with brain injury. You can reach NBIIC at 1-800-444-6443 or click here to email us.

Wash your hands.