Local family continues to heal by turning tragedy into hope
As John and Darla Barber stood outside of their son Josh’s house on Aug. 31, 2010, Darla was now panicking, but John was hesitant to barge in. It had been hours since Josh had responded to any of their text messages, but this was the Barbers’ constant struggle: balancing Josh’s safety with his independence. Josh suffered from depression and without adequate outpatient care, John and Darla had been monitoring Josh on their own.
Opening the door a few moments earlier would not have made any difference: Josh was already gone. As John lifted his son’s body, Darla frantically scrambled around in the dark for a knife to cut the rope. Then John desperately tried to resuscitate Josh to no avail.
The next few months were a blur. Maybe the pain the Barbers endured brought them closer to Josh. They were, as Josh had once described himself, “just a shell.” The Barbers decided they had to turn their tragedy into new hope. And with one another’s love and support, they found new life.
First, the Barbers wanted to write a book to tell the story of Josh’s life. “Becoming the Blues: A Family Memoir” will be released Saturday, Oct. 26. But the Barbers didn’t stop there. Their main goal was to implement a comprehensive outpatient program to help those who the mental healthcare system isn’t capable of serving. They started We All Move On, a nonprofit that will develop and fund the program.
Josh’s experience highlights the need for such a program. He received quality care the multiple times he was admitted to Butler Hospital, but each time he was discharged. The Barbers say the system failed him.
“You’re hospitalized when you’re in an acute, traumatic, terrible stage of your life,” said Maggi Barber, Josh’s sister. “You develop relationships with people who help you stabilize, then you’re discharged and all of those people are out of your reach.”
After Josh’s funeral, the Barbers met many other families suffering from the limitations of mental healthcare programs. “We have been bombarded with people in the same situation from day one,” said John.
Suicide is a growing problem. Rhode Island has had the greatest number of suicide attempts in the nation and a recent report by the Centers for Disease Control and Prevention found the suicide rate among those ages 35 to 64 increased 69 percent in Rhode Island from 1999 to 2010, but treatment is mostly voluntary.
“Outpatient services are voluntary and we help make sure the appointment is set up, but it’s up to the individual to go,” says Dr. Lawrence Price, medical director at Butler Hospital. “The rare exception is if someone is court ordered. There is a very high bar for that in Rhode Island.”
Following a suicide attempt, Josh was re-admitted to Butler, stabilized, and then discharged. He decided Butler’s partial hospitalization program wasn’t for him. Without sufficient services, the Barbers felt alone and helpless. And while the Barbers kept Josh alive with almost constant supervision, one the few times he was alone during an episode, he took the opportunity to end his own life.
The Barbers’ concern is that outpatient services don’t meet the needs of certain patients, especially those like Josh: well-functioning adults struggling with depression who refuse treatment. These patients are able to make their own choices, but their condition drives them toward self-destruction.
“You can’t force someone to get treatment for a psychiatric illness anymore than you can force them to get medical treatment unless they are clearly a danger to themselves or other people,” said Price.
The Barbers intend to use WAMO to create outpatient programs that keep the same staff with the patient throughout care. “I’ve been a nurse for over 20 years,” said Darla. “When developing a patient care plan, discharge planning is just as important as their inpatient care. That’s why we have discharge planners who make sure patients will have appropriate care in a safe environment at home, prior to allowing discharge.”
Over the years, Butler Hospital and other facilities have had various outpatient programs that tried to reach patients refusing services. Price says programs withered in the past because “the people they would be the most helpful to refuse to get involved in that kind of a program.”
But there is hope a program like WAMO could fill the void. “It is a good idea,” Price said. “If there were a way to engage somebody in that from the very beginning, I could see where that would have some value. It’s an open question.”
The Barbers aim to answer that question. “Our main goal is to bridge the gap between inpatient and outpatient hospitalization because that is where Josh’s care crumbled every single time,” said Maggi.
Added John, “We need to go with a phased approach where maybe we have just one counselor at first, then more, and maybe phase three is a whole facility dedicated to it.”
To help fund their effort, the Barbers are hosting a book release and annual WAMO fundraiser at Narragansett Café on Saturday, Oct. 26, from 1 to 5 pm. Josh’s original band, Smokestack Lightin’, and other special guests will perform, including Neal Vitullo, Tom Ferraro and Dave Howard. There is no cover charge.