Handling an Adult Child's Death: The Aftermath of Long-Term Caregiving

At the memorial, strangers shared stories of Bart comforting them with his motto, “Never give up, never surrender.” Whether Bart was talking to someone experiencing seizures, or the mother of a child with spina bifida, the stories kept coming.

“He had the gift of being able to see and share the humor and humanity in ordinary things,” Joel says. “And it was incredibly comforting to learn how much he had shared. 

“There is a saying from the Dalai Lama, ‘If you want others to be happy, practice compassion. If you want to be happy, practice compassion.’ Bart lived that way, but we didn’t realize quite how fully until everyone reached out after his death and shared their stories."

Bart, Miguel (Cassidy's husband), Cassidy, Dayle and Joel.

Courtesy Joel Goldstein

In 1985, Joel and Dayle adopted Bart from Korea when he was 5 months old. Six years later, they adopted his sister Cassidy from the same orphanage. Brother and sister were very close, and Bart saw himself as Cassidy’s protector, nicknaming her “my snow angel” because she arrived home in winter.

In 2001, Bart was nearly 17 and Cassidy just 11 when he was riding with friends in a packed car that got in a horrific accident. He was in a coma for 30 days and suffered a traumatic brain injury (TBI).  Nine months post-injury, the hospital and school advised Joel and Dayle to put Bart in an institution. Instead, the couple dug into learning everything they could about TBIs and some of the existing alternative therapies. They enrolled Bart in school, a half day in special education with a full-time aide, although the fatigue from Bart’s injuries meant he frequently fell asleep in class.

Navigating the new normal

Bart managed to get through high school and graduated in 2005, two “very tough years” after the rest of his class. At that point, Cassidy was a freshman, and she had witnessed too many angry outbursts and episodes. There were a number of years where she did not want much to do with her brother. Joel recalls one awful day when Cassidy witnessed Bart slamming his door for a solid half-hour, screaming obscenities.

“I never fixed it,” Joel says.  “I wanted it to be a reminder to him of what had happened.”

Bart’s life after high school was impacted by what Joel calls “a conspiracy of decency — good people who wanted to help him without asking for anything in return.” A priest helped Bart navigate admission into Maria College in Albany, New York, but eventually the work was too demanding. He lived in a supervised apartment complex while continuing his cognitive remediation and rehabilitation. Slowly, his disinhibited behavior resulting from the brain injury began to subside and he was able to better regulate his emotions.  

Eventually, Bart was able to live on his own in a small apartment within walking distance of his parents.  He found a job at a pub and restaurant in Delmar, New York, called Swifty’s. Over the next eight years, he became a beloved character at the establishment, connecting with everyone through his signature sense of humor and sometimes even grabbing the microphone from the singer at the end of the night. The patrons, in turn, cared for Bart, giving him rides home if the weather was bad, and looking after him in wonderful ways.

Bart worked two hours a day, hard physical work most times, unloading trucks, sorting bottles and tidying up.  The job and productivity were critically important for his self-esteem and his sense of connection.

And then the COVID-19 pandemic changed everything.

COVID, isolation and depression

“There was no longer a job for Bart with the quarantine,” Joel says. “Everything shut down, and for an extreme extrovert like Bart, this was crushing. That first year was, in some ways, the worst of all of our lives.”  Over that year, Bart became an alcoholic. (The CDC reports people with moderate to severe TBI typically face a variety ​of chronic health problems; 29 percent use illicit drugs or misuse alcohol after injury.)​ When Swifty’s reopened, Bart was no long able to hold down his job. 

“He’d lost more than 30 pounds and it was so hard to watch him waste away,” Joel recalled.  No matter how his parents argued it, Bart wouldn’t consider quitting. He liked the way alcohol made him feel and he began to spend a lot of time on Facebook, looking at the lives of friends with spouses and beautiful children. It made him sad to understand how different the direction of his life had been. 

Approaching the 21st anniversary of the accident, it was clear to Joel that his son was clinically depressed. He and his wife shared their perspective with Cassidy that her brother would probably die from the alcoholism and depression. By then, Cassidy had repaired her relationship with her brother, even naming her son after him three years earlier. Sadly, Joel and Dayle’s worst fears were realized.

A foundation, a legacy

Bart with his “snow angel,” Cassidy.

Courtesy Joel Goldstein

Joel’s Tips for Parents Who Have Lost a Child

• Stop replaying the tape and retreading the “could haves.” You can only do so much as a parent.
• Humor helps ease the pain. Surround yourselves with funny people, funny movies, funny everything. If someone tells me to watch a tear-jerker movie, I say, “Sorry, we are on a sadness reduction diet.”
• Keep busy!  Find something outside of you. I work with a therapy dog, visiting schools and hospitals to help others in honor of Bart.
• Play music.  It can take you to a safe, hopeful place.
• Give your family members space. You all need breaks and your “me” time.
• Get outside and in places where you can be in awe of nature. It helps “unstick” you and your thoughts.  
• Give things away to people who could use them.  A family in town had a house fire and we donated Bart’s bed and kitchen items. We gave items of his clothes away to the people who loved him.  We had something for everyone who came to the apartment.

In 2016, the family established The BART Foundation to give families access to information and form a community where they could share learnings, such as hyperbaric oxygen treatment; supplements and other safe alternative therapies.

Bart with his “snow angel,” Cassidy.

Courtesy Joel Goldstein

Joel’s Tips for Parents Who Have Lost a Child

• Stop replaying the tape and retreading the “could haves.” You can only do so much as a parent.
• Humor helps ease the pain. Surround yourselves with funny people, funny movies, funny everything. If someone tells me to watch a tear-jerker movie, I say, “Sorry, we are on a sadness reduction diet.”
• Keep busy!  Find something outside of you. I work with a therapy dog, visiting schools and hospitals to help others in honor of Bart.
• Play music.  It can take you to a safe, hopeful place.
• Give your family members space. You all need breaks and your “me” time.
• Get outside and in places where you can be in awe of nature. It helps “unstick” you and your thoughts.  
• Give things away to people who could use them.  A family in town had a house fire and we donated Bart’s bed and kitchen items. We gave items of his clothes away to the people who loved him.  We had something for everyone who came to the apartment.

Since Bart’s death, the foundation has continued the mission to create awareness and advocacy for people with brain injuries. They have connected with thousands of families who have been impacted by TBI.  Joel, Dayle and Cassidy take comfort that, despite the pain of his loss, Bart’s life made a difference to so many.