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Saving Seth

"Saving Seth" Continued...

Issue: "The Battle for Africa," Feb. 8, 2014

It took Deborah years of experience to gain adequate treatment for Seth. She attended a National Alliance on Mental Illness (NAMI) “Family to Family” class, a 12-week course taught by trained family members. Other mothers and advocates taught her options and strategies never introduced by doctors or caseworkers. “I always feel like it’s almost a game,” she said. “You need to learn how to game the system, and I’m constantly fighting to get my son the support he needs.” Deborah was eventually able to get Seth into a 24/7-care group home in Mesa, Ariz., with four other men also with serious mental illnesses.

In addition to the group home, Seth has an ACT (Assertive Community Treatment) team, an interdisciplinary program for severely mentally ill outpatients. The ACT program emerged during the deinstitutionalization era and is available in six states and various local regions. Theoretically, the teams help outpatients transition into community through a long-term, proactive, highly individualized approach. But it still takes a mother or father to step in frequently and be an advocate, as Deborah did to put Seth under 24-hour care in a group home. 

The group home sits in a quiet, suburban residential area with manicured lawns. It’s a clean, airy, five-bedroom house that offers patients board games, a TV, and a ping-pong table. The residents are assigned various household responsibilities: Each takes a turn cooking dinner or wiping the windows. They share a common love for hot sauce—they keep a Costco-sized bottle of Tapatio on their dining table, and squirt it on everything from fries to popcorn.

Staff members monitor Seth and other patients, teach them basic skills, and resolve conflicts. The group home manager when I visited was Ian Jacoba, a 6-foot-4-inch ex-football player with thick arms, a thick neck, and a thick voice. He had two years of experience working as a detention officer for a jail, where his interactions with the mentally ill were limited to insuring they take their medication and maintaining a safe, structured environment. Now he works in a setting where the goal is to keep residents out of jail. He and Seth share a casual interaction of easy banters and occasional admonishments, like a big-brother mentorship.

“The concept of helping develop them into a member of society where they can have a job, a wife, children, a family ... I didn’t connect it,” Jacoba said. The biggest thing he’s learned while working in this group home, he said, is that people with mental illnesses are not that different from “normal” people. “If you don’t pay attention, if you think they can’t talk about anything beyond the weather, then you’re missing out. You’re really missing out on some truly interesting individuals.”

Seth has improved significantly with the acute care provided at the group home. Still, Deborah has to keep fighting to keep Seth there for as long as he needs to be. Although Seth has fared much better and is gradually slipping out of anosognosia, he still struggles physically and psychologically.

For one, Seth hasn’t had a proper holiday dinner with his family for years. He has counted the exact number of days that he’s been away from home since he was age 17: 367 spent in hospitals, institutions, and jail, not counting the almost two years he’s spent in a group home. “Holidays are hard for Seth,” Deborah said. “I can’t remember the last good holiday dinner. Seth has a hard time, I think, because it reminds him of what he’s lost.” Deborah’s voice started quivering: “He so much wants to be with his family. But his brothers are moving on with life, and it’s hard emotionally for him.” Sometimes, as Deborah drives back home after visiting Seth, she breaks down in the car. It breaks her heart as a parent to leave a son in another home.

Mental illness is a lifelong issue. Although much improved because of better medications, Seth’s mental state destabilizes whenever things fall out of routine. Right after Jacoba got promoted from group home manager, Seth snuck out the window and ran away. His father had to go find him. “Such is our life!” Deborah wrote in an email to me. But she also tells me, “From the beginning, my son is the hero here. He’s the one who’s suffering, and we’re the ones watching him suffer … but as much as God has allowed the suffering, every step of the way, He’s provided.”

I THOUGHT ABOUT WHAT DEBORAH MEANT by “hero” on the long drive back home, and I realized she meant Seth is a living sacrifice. His family has shed many tears, but they also have witnessed God’s providence in every trial. Seth has brought blessings of grace and insight to those who wept and rejoiced with him. Whatever Seth’s mental condition, Deborah said, “He responds to Christ. … We know the Holy Spirit is in him.”

—This was part one of Sophia Lee’s investigation. In part two she writes about a young woman dealing with bipolar disorder, a young man whose condition tortures his mother and himself, and what government and churches are doing—and not doing.

The sources for the information in the graphic are the National Institute of Mental Health, National Alliance on Mental Illnesses, National Alliance to End Homelessness, and Treatment Advocacy Center.

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