(3-13-20) From My Files Friday – In late 2016, I posted a blog about retired Air Force Brigadier General Gary Ambrose who’d received an award for leadership and advocacy in my home state of Virginia.  During his acceptance speech, the general spoke eloquently about his son, Brad. The general continued to advocate after receiving the award, overseeing the jail diversion program in Fairfax.  

“Our full time mission became keeping him safe and alive.”

by Gary Ambrose:

Like many others, our family became mental health advocates by necessity.

We were advocates for Brad, who, for 17 years, lived with paranoid schizophrenia and the voices that urged him to take his own life.

Brad was intelligent, articulate, well-read, and charismatic. We shared a sense of humor. Of course, we loved him. But more than that– we liked him. He was our son, but he was also a friend. During “good times,” when he was medication compliant, he was a pleasant companion. 

He was a peer mentor in the NAMI Peer To Peer program and the first chairman of the Mental Health Subcommittee of the Fairfax County Re-entry Council. In the spring of 2014, he was the first person with mental illness to be highlighted on Channel 4’s “Changing Minds” segment. He was passionate about improving life for people with mental illness.

He had potential.

But, he had also spent many of the 17 years of his illness cycling through the healthcare and legal systems, and was, much of the time, a danger to himself.

Brad’s illness took him from us in 2014.

In retrospect, he first manifested his illness when he was 18 years old.

At the time, we concluded that his “aberrant” behavior was the result of recreational drug use. A psychiatrist to whom we referred Brad asserted that his was the rebellious behavior of a normal, young male, and that “you’ll all laugh about this in 10 years.”

As time passed, Brad’s situation deteriorated, and we were ill-equipped to help him.

Eventually, his illness was diagnosed.

In the beginning, my wife, Marcia and I did the best that we could with no knowledge of mental illness and little available guidance We engaged emergency room staffs; various reps of human services organizations we didn’t understand; Fire and Rescue; law enforcement; prosecutors; public defenders; psychiatrists, both private and public; private attorneys; and so on.

Over the years, whenever Brad lived in our home, we carefully managed his medications to hopefully ensure that he was medication compliant. We worked hard to keep him compliant. He outsmarted us a lot.

Our full time mission became keeping him safe and alive.

In one year alone, Brad was hospitalized 20-plus times for psychiatric issues and overdoses.

We had him temporarily detained for hospitalization five times to protect him from himself.

There was no roadmap to the help we needed. We engaged with elements of the Community Services Board (CSB)–such as the Mobile Crisis Unit–without understanding their role in the big picture of mental healthcare treatment in Fairfax County.

We were always in crisis mode.

Brad’s illness also led to legal problems. Over the years, when he was non-compliant or when his medications lost their effectiveness, his behavior would deteriorate and result in encounters with law enforcement. We estimate (when Brad wasn’t living with us, we sometimes had no idea of his whereabouts) that he served multiple years in jail or in the forensics units of State hospitals.

On one hand, his incarcerations caused us much distress. On the other, they offered some sense of relief because we hoped that jail offered relative safety. At least we knew where he was and that he was in a controlled environment. Of course we were naive in that respect, but that’s a separate topic.

Fifteen years into Brad’s illness, we discovered that there is help.

First, we participated in NAMI’s Family To Family classes—which I considered a life-changing experience. The classes helped us to understand that we were not alone, that our situation was not unique, and that there were options available to us to help us advocate for our son–and ourselves.

NAMI made us aware of Concerned Fairfax, a grassroots mental health advocacy group focused on addressing real-time challenges for people like us—issues like transparency of services and housing options. Our participation with Concerned Fairfax afforded us an opportunity to achieve some influence over our own situation through advocacy.

Through our participation in NAMI and Concerned Fairfax, we learned about the Fairfax Falls Church Community Service Board (which oversees mental health programs) and the role that it plays in delivering the services our son required. Jeanne Comeau, President and CEO of NAMI Northern Virginia, suggested I volunteer to fill a vacant CSB board position, adding “if you really want to get involved.”

I submitted my resume and was appointed to the Fairfax-Falls Church CSB board in 2013. Meanwhile, Marcia joined the NAMI Northern Virginia board, and our daughter became a Resource Advisor for NAMI’s Family To Family program.

Whenever Brad lived in our home, we often transported him to appointments with his case managers and his psychiatrists. He ensured that we knew them, and in the final two years of his life he’d often invite us into their offices for the last 15 minutes or so of an appointment.

Following Brad’s death, it was a struggle for us to visit some of the facilities where he/we had participated in meetings or where he had received treatment. In the days immediately following Brad’s death, we reevaluated our advocacy involvement, as continuing to participate on the CSB board, in NAMI, and in Concerned Fairfax was painful.

Brad had seemed to be doing so well as a peer and had achieved so much in a short time.

Why, then, did this happen to him?

We have no answers. Maybe they’ll come, in time.

We have wrestled with guilt. What should we have done that would have saved our son’s life?

In our struggle for answers, our family came to believe that it’s important for us to continue to be advocates on behalf of people living with mental illness, so that other families might benefit from our experience. I believe that we’ve all found that remaining involved in something that Brad considered important is a potent kind of therapy.

Lessons We Learned

Through our 17 year odyssey with mental illness, we’ve learned a lot and the lessons are clear:

First, the caregivers who included our family as part of the treatment team were the most successful in helping our son.

At the end of the day, we were Brad’s caregivers for the long haul. Ours was the task of keeping him alive. For caregivers who kept us away, or when Brad revoked permission to divulge information, we remained in the “transmit’ mode, telling the caregivers what we thought they needed to know to help our son.

Second, it’s important to include peers in the process as they can relate in ways we simply could not. We had tried without success for several years to encourage Brad to explore peer engagement with NAMI. A NAMI peer mentor, whom we and Brad met via our Family to Family class, finally influenced him to explore that option. I speculate that Brad’s Peer To Peer involvement might have had the potential to save his life.

Third, people with mental illness should not be in jail. Those with mental illness who are incarcerated require mental health services. And those being released require medication, a warm handoff to services, and housing options beyond shelters.

And finally, community mental health organizations should, to the extent possible, be the safety net—beyond emergency services–for everyone.

Although we can no longer advocate for our son, we believe that our advocacy can benefit other parents with family members living with mental illness.

We believe, given our experience, that we can still make a difference.

(Edited remarks delivered by Gary Ambrose on October 6, 2016 on the occasion of receiving the 2016 Virginia Association Of Community Services Boards (VACSB) Gartlan Award for Leadership and Advocacy.) Named for Virginia State Senator Joseph V. Gartlan, the award annually recognizes one individual in the Commonwealth who has distinguished him/herself in leadership and advocacy for citizens with mental illness, intellectual disability and/or substance use disorders.

 

 

 

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