Editor’s Note: In the Natural Supports Perspective Series, SAMHSA’s GAINS Center explores the lived experience of individuals identified as a natural support of a person who was or is incarcerated or justice involved.  Our goal is to promote a greater understanding of the challenges and opportunities that natural supports may face when providing support to individuals involved in the criminal justice system who have mental and/or substance use disorders, intellectual and developmental disabilities, or trauma-related needs.  Natural supports are established when support and assistance naturally flow due to a previously established relationship or environmental context.  People identified as a natural support to a person who is incarcerated or justice involved tend to be family members but can also be friends, coworkers, neighbors, clergy, or local librarians, among others.

Natural supports provide emotional support through personal connection and have been identified as the key to effective service delivery in wraparound care practices.  Natural supports of people who are incarcerated or justice involved have the potential to facilitate service utilization and adherence to court orders, from providing rides to treatment appointments, hearings, or parole appointments, to providing a home upon reentry.  Numerous studies demonstrate the importance of natural supports for individuals with mental illness and intellectual and developmental disabilities for improving the individual’s mental health outcomes and increasing program efficacy.

The following article is part two of the Natural Supports Perspective Series and provides us the speaker’s reflection on their experiences with their sibling’s traumatic brain injury, justice involvement, and long-term caregiving.

Content Warning: Traumatic brain injury and incarceration.  The following story is the speaker’s personal experience and may evoke strong emotions for some readers.

In my brother Charlie’s mind, he’s a suave guy in his mid-twenties.  He’s six-foot-four, blonde and blue-eyed, liked by young women, and able to win over any room.  And he was almost the Marlboro man.  To the rest of the world, Charlie is actually a 65-year-old man with a palsied hand, lunging gait, and slowed speech.  For the past forty years, only a few of us have understood how these two versions of Charlie co-exist and how they put him in peril and have cost all of us so much.

My brother has always been an adventurer and a fan of hijinks.  When I was 5, and he was 7, he tried to take down a beehive as we played and learned the hard way that he is severely allergic to bee stings.  We were close playmates as children and good friends as young adults, going to parties and concerts together and sharing a friend group.  By his mid-twenties, he was a landscaper by trade but had the looks for acting and modeling, and he landed a high-profile gig—Charlie really was going to be the Marlboro Man.  Two weeks before he was to leave for South America for his Marlboro Man photoshoot, he was involved in a terrible car accident in New York City that required the jaws of life to remove him from the vehicle.

I was living in upstate New York, and our family called me back home to Long Island to say goodbye to my brother.  Instead of going straight into the hospital, I went to the church in which we’d grown up.  I banged on the doors and was told it was closed.  You can talk to God anywhere, but I needed to be in front of that altar where I had received communion, and we had all spent so much time.  They did let me in, and I wept for my brother until something told me that he would be okay.  When I joined my family circled around Charlie’s hospital bed, he lay in a coma with no brain activity.  I took his hand, and the monitor lit up.  The doctors said where there’s movement, there’s hope.  Charlie spent the next 6 months in that hospital.  When he regained consciousness, he felt the impairment caused by a traumatic brain injury (TBI) and tried to pull out the tubes so he could die.  I told him that he would recover.

Our caregiving circle was small.  All but one of his friends bailed on him.  They couldn’t handle seeing their handsome, fun-loving friend in a hospital bed with a broken body.  After the hospital, Charlie spent 2 years in a rehabilitation facility.  Then each of my parents and siblings carved out space in our homes for him, and he spent the next 20 years moving back and forth between us.  My mother was a fierce lioness who fought for years for Social Security to support Charlie and cover the cost of his rehabilitation.

It was 20 years before Charlie could live independently in the world.  Despite his injuries, he passed the DMV’s driving test and got a license and a car.  Unfortunately, this new mobility created opportunities for him to do things he shouldn’t and led to over 70 encounters with law enforcement and at least 3 or 4 periods of incarceration.  Because of the TBI, Charlie still thinks he’s this handsome young guy, and he acts like it.  He thinks young women are staring at him because he’s gorgeous.  When he approaches them with his awkward gait, slow speech, and sometimes inconsistent hygiene, they are frightened.  Over the years, the police in the towns he’s lived in have received countless calls from people saying, “he’s stalking me,” “he’s trying to get in my car,” or “or he’s hanging out too long at our restaurant and it’s offending our patrons.” No one knows what’s happened to him, how to interpret his actions, or that he is harmless.

No matter what I or anyone says to him, Charlie does what he wants.  He’s made friends with a group of people who also live on the edges of society.  Charlie lost his car after a few accidents and started walking down the middle of the street at all hours of the day and night.  The police would come to my door at 2 o’clock in the morning to ask if Charlie was taking his medication.  The police of one town eventually got frustrated with all the complaints and warned me to get Charlie out of town before “some good old boys put him in a ditch with a bullet in his back.” I got Charlie out of town as fast as I could.

Over the years, I’ve tried to get him into care facilities.  He resisted these moves for as long as he could, believing that I was trying to institutionalize him and take his freedom.  I did get him involved with a facility where he became a janitor and did much better for a while.  When they eventually let him go, his old problematic behavior and run-ins with law enforcement resumed.

I feel like the community providers and TBI centers let my brother fall through the cracks.  They haven’t pulled him into work programs and don’t provide enough occupational therapy.  I work two jobs and take him to court and meetings, and the service providers just push papers around without doing anything for him.  I don’t know if this is because they are overloaded or there aren’t enough programs, but I do know that my brother has been thrown into a legal system that doesn’t understand him and that he cannot navigate.  He goes to court looking just as disheveled as he does when the police pick him up.  He thinks he can get smart with and laugh at the judges because they can’t understand his speech.  The legal system does not have the awareness to respond to my brother effectively.  He doesn’t need incarceration, and it hasn’t worked.  He and people with impairments need places that can meet their individual needs and be a safe haven.  I want him in a care facility that looks after him and helps him find the spark in his life that will motivate and help him to stay out of trouble.

When I think back to putting Christmas lights up in Charlie’s hospital room all those years ago, I never thought he wouldn’t fully recover.  He was my brilliant brother who got straight As without studying.  He knew that he could do anything in the world.  I expected so much more from him in his recovery.  I see how much more potential he has, but I have had to understand that you cannot force someone to do something your way.  We all have these wonderful ideas of hope for others, but there’s no amount of wanting that can make it happen.  It must come from Charlie.

In 2019, I took Charlie to Florida, where we connected with four friends from high school.  That night, over 40 years after his accident, we had dinner and drinks and talked about old times.  It was good for Charlie, and it was good for our friends.  In 2021, Charlie became a grandfather.  His daughter calls me Aunty Dee, and I know her father’s condition is hard on her.  I’ve tried to step in and be that part of her life that my brother can’t be, though he is absolutely thrilled to be her dad and so excited when he gets a picture of his grandchild.  I try to share with them who my brother was when he was a kid and how wonderful he was as a young man.

I have done everything I can for Charlie over the years.  Caregiving is emotionally frustrating and physically exhausting.  Financially, I broke the bank for my brother.  I’ll get through that.  I feel like that’s the love you give as a family member.  I won’t live forever; I just want my brother to be safe.  I want to tell everyone in the legal system and on the street that Charlie was just like you and me, and then all our lives changed in the blink of an eye.  Like all of us, he still has something bright and beautiful inside him.  Charlie, like all of us, has incredible gifts that he brings to this life.

Resources for Caregivers of Individuals with TBI

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