During my professional life, I have had the privilege to help folks with a variety of illnesses and injuries, but none touched me as deeply as treating a person with an acquired brain injury. 

Whether as a result of illness (Long COVID, stroke) or trauma, an injury to one’s brain is the moment in which life changes in ways not predictable. From incredible stories of recovery to tales of chronic frustration, brain injury affects the individual, the family and their community. 

Although I have retired from my life as an occupational therapist and rehabilitation director—with a specialty in adult neurologic rehabilitation—I was recently asked to assess someone who sustained not only a brain insult but also orthopedic injuries. 

In my neck of the geographic woods, highly skilled rehabilitation professionals are scarce. Patient, family support and most importantly education and training are limited. These are the circumstances that motivated me to share knowledge and provide guidance to help make the insurmountable achievable.

It is not all there is! 

Despite suffering damage, our brains can heal. They can make new connections and hardwire new pathways which is how an individual can regain some or all of their independence. The key is to provide the individual with carefully curated challenges: opportunities to experience simple things like drinking from a cup to paying their bills. 

Start with simple tasks and provide variety and lots and lots of repetition. Expect setbacks, because everyone experiences them. Weather the outbursts, because emotions are felt differently than before. 

It takes years for a brain to heal and make those important new connections. 

Given the right opportunities, this will happen.

As a family member or caregiver, it is so important to ask questions. Yet here is the caveat: What are the questions you should ask?

When your questions are about the week or month ahead you will likely get concrete answers. Ask about the nursing goals for your family member for the upcoming day or two, if they are in the hospital. Ask what medications off of which the loved one can be weaned. Ask to see your social worker frequently; they are your connection to the medical team, who might not always be available to you.

There are many support systems available and each is appropriate at different points in the recovery journey. Seek them on Facebook or through outreach programs affiliated with your local hospital.

What else can you do? 

One of the important vehicles to promote learning and recovery is to enable motion. Facilitate movement to explore and learn self (body), immediate environment (bed, toilet, meal table), and then home environment. Provide quality rest with an absence of stimulus (no TV noise), and ensure good hydration and consistent, clear communication interspersed with periods of work (self care, exercise). 

If you are now wondering if or how what you have read applies to you or your family member, then you have understood how important it is to assess each individual to determine their ability and difficulties—and not categorize that person by a diagnosis. None of us are just an illness or an injury. We are whole beings with complex histories that interplay with the injury and the potential for recovery. 

In the beginning

After an acquired brain injury, the individual progresses from the ICU to a rehab unit to a traumatic brain injury facility. Keep in mind that the medical team is bound by licensure, by facility policy and most importantly bound to provide the best care possible to your family member. 

On occasion, members of the team are not able to make independent decisions outside of the parameters I mention. Here’s an example, a composite patient. Let’s call him James. He will have a virtual sitter assigned because he is restless, has poor insight and judgment, and is known to pull out his catheter. This has already happened and he failed a voiding assessment, requiring his catheter to be reinserted.

A virtual sitter is a remote monitoring system meant to verbally remind patients about safety, but they do that from a remote site.

James becomes agitated (due to his recent injuries) when the virtual voice asks him to leave the taped catheter alone. He spends all day in bed. He wears a hospital gown, and fortunately is able to move and touch most parts of his body. He has easy access to his catheter.

Perhaps rather than the agitating virtual sitter and the disembodied voice telling him to stop what he is doing, he would benefit from single-use hospital pants. These would limit his access to the catheter, remove the need for the agitating virtual sitter and improve dignity. Yet the hospital staff, according to policy, will insist on the virtual sitter, or mitts, or a one-to-one sitter. 

A simpler option is available, but as I stated, there are license issues, policy issues and sometimes patient-need issues. 

In my opinion as a former therapist, access to information, support from folks who are traveling a similar road, and access to people who have the knowledge and skill to guide you appropriately, make the recovery trip a bit easier. 

Dear reader, I can cite cases and situations and report on outcomes, but that would take many pages and chapters. If you are so inclined, read any of the works of Dr. Oliver Sacks, a neurologist who explored the brain's strangest pathways and wrote about it. Ultimately, do not be hesitant to ask, to request explanations and reasons why. Ask how you can facilitate the journey. 

If, on the other hand, you are the individual whose life has been changed by a brain insult, I am here to tell you that if you continue to put in the work needed, you will improve, you will achieve many milestones and you will experience many setbacks. But, dear reader, isn’t that all life is about?

Should you want to reach out, do so at copyeditor@riverreporter.com, and I will do my best to answer or direct you to the optimal source.