Families of mentally ill face daunting challenges

From the Oregonian, November 12 2008

Imagine your brother had a severe chronic illness. Imagine it messed with his ability to realize how sick he was and made him act a little crazy.

Imagine he resisted getting treatment and insisted he was fine. Imagine he threatened you when you tried to help. Imagine his caregiver nearly went bankrupt. Imagine you found out he was off his meds again and about to be evicted. Imagine you were scared, desperate and clueless what to do — but decided to visit him one more time.

Imagine, in other words, you were Theresa Rockwood last month.

Her dilemma played out with horrific consequences: She was found stabbed to death in her brother’s apartment. Her brother, Joseph F. Rockwood, 54, who has schizophrenia, is charged with murder.

“One of the things our system is not well prepared to do is engage families,” said Chris Bouneff, director of marketing and development for DePaul Treatment Centers and president of the National Alliance on Mental Illness of Oregon.

With a physical illness, Bouneff said, caregivers are more insistent on bringing family members into discussions about treatment. “Typically, in mental health, that doesn’t happen.”

There are many reasons: fear, stigma, denial, ethical concerns about privacy protection.

“It’s not uncommon for family members to struggle with trying to get care for their loved ones,” Bouneff said. The problem gets especially dicey when the loved one has schizophrenia, which plays havoc with self-awareness and logic.

“It doesn’t work to say to them, ‘Why don’t you just get help?’ Their frame of reference will never be that they need help,” Bouneff said.

Like Theresa Rockwood, clinical psychologist Xavier Amador had a brother diagnosed with schizophrenia. Amador’s book, “I Am Not Sick, I Don’t Need Help: How to Help Someone with Mental Illness Accept Treatment,” is based on his own frustration, starting when he confronted his brother Henry and accosted him for tossing his medicine into the trash can.

“With every dose of ‘reality’ I tried to give him, Henry countered with more denials,” Amador writes. “And with every go-round we both became angrier and angrier.

“My natural instinct to confront his denial was completely ineffective and made things worse.”

So where does a worried relative turn? “There’s no easy answer,” Bouneff said.

Even if the law made it easier to confine mentally ill people against their will — a controversial move — there’s little capacity to take care of them.

“You can’t get into the state hospital, and you can’t get out of the state hospital,” Bouneff said. “There’s nowhere to go. Cascadia is overwhelmed.”

Cascadia Behavioral Healthcare, the state’s largest nonprofit provider of mental health services, nearly collapsed financially in May. It has scaled back staff and services to get into the black.

Friends of Theresa Rockwood said she told them her brother had a caseworker and a doctor at Cascadia. Cascadia officials declined to discuss the case, citing federal privacy laws.

“We have a system that’s chronically underfunded,” Bouneff said. “Situations like this put providers in a bind. The problem is much more complex than pointing a finger at the provider.”

Mental illness is not voluntary, said Beckie Child, president of Mental Health America of Oregon, an advocacy group. “Nobody asked to be mentally ill.”

Her group hears from families that are at a loss about how to handle the needs of relatives with mental health problems. “We certainly can listen,” Child said, “and sometimes that’s the most helpful thing we can do.”

Mental illness carries stigma that physical illnesses such as cancer or heart disease do not.

“It affects the whole family,” Child said. “It’s really tricky not to wind up blaming the person who has the illness. And it’s hard to be patient and watch someone go through the healing process — or not.”

EXTRA – Stabbing death: Another victim of Oregon’s broken mental health system