Feeling hopeless, they watch their adult son languish with delusional and suicidal thoughts.
They live in constant chaos and fear, never knowing whether he'll harm himself or someone else.
They've offered him every resource to get treatment for an undiagnosed mental illness, but he refuses.
Meanwhile, they continue to work with a psychiatrist, attend support groups and classes through the National Alliance on Mental Illness, and go so far as to try FBI negotiation tactics they read in a book.
"We will do anything," they say, "to get him help."
Their son doesn't want help. He doesn't believe he needs help.
The mother and father, both retired professionals, share their story to expose flaws in the system and to soften the stigma.
But most of all, they do it to let others know they're not alone.
The Statesman Journal is not publishing the names of the Salem family because they fear doing so may push their son over the edge. He's threatened suicide multiple times, harmed himself in the past and told them how he'd take his life.
Every time they've come close to convincing him to get treatment, he pulls it together just enough to say no to medication or hospitalization.
They filed a civil commitment petition, but Oregon laws make it difficult, if not impossible, to hospitalize an adult against their will.
Proposed legislation to lower the state's threshold for civil commitment drew passionate testimony from other parents in eerily similar situations during the recent session.
A father described how his adult child, who left the water running from a garden hose for six days and nights to let the demons out of the house, wasn't stable enough for a case manager to do a health check, yet didn't meet the criteria for civil commitment.
A mother told legislators she tried unsuccessfully several times to have her adult child civilly committed because he was aggressive, publicly threatened people on multiple occasions and assaulted her more than once. But he still didn't meet the criteria.
So what's a parent to do?
No standards for courts to follow
Despite a clear need for intervention, providing treatment to persons with mental illnesses is seldom easy. Refusal of care is common because the same disorders that impair mood, thoughts and function also impair judgment.
Oregon is one of the few states that does not define criteria for civil commitment within its 1973 statute. The criteria are vague and subjective.
Chapter 426 of the Oregon Revised Statutes allows a judge to involuntarily commit someone if shown "clear and convincing evidence" that they are "dangerous to self or others" or "unable to provide for basic personal needs" due to a mental disorder.
But there are no standards for courts to follow.
Lawmakers and judges have tweaked parts of the law over the years. In 2010, the State Court of Appeals ruled a person could be committed only if his or her mental disorder created an "imminent" threat, which is difficult to prove and interpreted differently by county and by judge.
Senate Bill 763 would have amended the statute and lowered the bar, defining "dangerous to self or others" to mean likely to inflict serious physical harm upon self or another person within the next 30 days. It would also have allowed the court to consider a person's past behavior, including threats or attempts at suicide and harm to others.
"Based on what I heard as the (committee) chair and in the work group, there is a definite need," Sen. Floyd Prozanski said. "We need to do something different than we're currently doing.
"It would give more opportunities for health providers, and more time, to determine what is necessary and needed."
That's all these parents are asking for, a chance for their adult children to be properly diagnosed and treated.
But the bill died in the Joint Committee on Ways and Means. Prozanski hopes it will be reintroduced during the 2020 legislative session.
Civil liberties vs. public safety
The National Alliance on Mental Illness cautioned the Senate committee that the proposed legislation would have changed very little if reforms weren't also pursued in the broader behavioral health care system. The group insisted investments need to be made in resources and providers need to do better.
In Marion County, the health department collaborates with law enforcement and the legal system to reduce jail and state hospital admissions. Mobile crisis teams and diversion programs help them work toward that goal.
"We have a very good system," said Ann-Marie Bandfield, Program Manager of Acute & Forensic Behavioral Health at Marion County Health & Human Services. "Just not enough dollars to help all those who need them."
A 25-year veteran of crises work, Bandfield saw promise in a bill that would seemingly give mental health providers more time and more information to evaluate a person's ability to care for themselves and make their own decisions.
Even if civilly committed by a judge — only a small percentage actually go before a judge — a person would have to be evaluated by an independent psychiatrist before medications could be forced.
Bandfield said about 17 percent of persons placed on psychiatric hold in Marion County go before a judge, which she said is high compared to other counties. Marion has a unique population with five state institutions.
Once before a judge, she said the commitment rate is 90 percent.
Finding a delicate balance between patient welfare, civil liberties and public safety will be the challenge for any future legislation.
"It's as complicated as the people we are trying to serve," Bandfield said.
Families have no legal recourse
Hospitalization has long been a mainstay of psychiatric care, but past abuses of the civil commitment process compelled more stringent laws. Oregon's sordid history of mistreating the mentally ill contributed to the 180-degree turn.
The statute protects the civil liberties of a person with a mental illness, even when families feel threatened and the person appears extremely ill. Experts argue someone suffering psychosis is not capable of deciding if they need medication or hospitalization.
"I personally believe the pendulum has swung too much to the individual," local psychiatrist Dr. Robert Wolf[Field] said. "You and I and everyone in the field know they're not exercising their right because they’re not lucid."
Wolf is not consulting with the parents featured in this story. Their son is not his patient.
But he works with other parents and families who feel just helpless and hopeless.
"This is a common story," Wolf said. "You could be talking about 5-6 families I've talked to the last 12 months who have to deal with that and manage that. They're watching a loved one disintegrate because of severe mental illness who refuses medication, and there's no easy legal recourse to impact treatment."
These parents have been trying to get their son help for nearly two years. What motivates them to keep trying are memories of a typical teenager who was a standout student-athlete in high school and went on to graduate from college.
They saw gradual changes in him in his early 20s, and he seemed to snap when denied entry to a post-education program.
Their son is in his 30s now. To outsiders, at least in short visits, he appears well. But he's unable to hold down a job and has isolated himself from family and friends.
His behavior is unpredictable, and he's short-tempered and verbally abusive. He suffers what his parents describe as delusions. He believes they're involved in criminal activity.
"When he's off the rails, he's scary," his dad says. "He's not rational."
Although their son has not been diagnosed, they say the symptoms mirror bipolar disorder or paranoid schizophrenia. He has extended family members who are bipolar, so his parents have always been on the lookout for signs.
His dad describes “blood-chilling” phone conversations and bizarre text threads in which their son has threatened family members. Even documentation of those isn’t considered "clear and convincing proof" to support civil commitment.
Court system is not the answer
They've taken steps to protect themselves and the rest of the family.
They signed over the car he was driving for liability reasons and put a GPS tracker on it, so at least they'd always know where he was. They also changed their will.
Their son agreed to meet with a mediator, but that only made things worse. His parents explored filing for guardianship, but his condition wasn't bad enough to meet those requirements, either.
They convinced him to check in to a hospital at one point, but he refused to take the medication and was soon discharged. The hospital couldn't hold him against his will or force him to take the medication. He refused outpatient care, too.
Their friends can't believe after all they’ve done, they still can't get their son help. Some have even made comments like "maybe he'll commit a crime or get in an accident."
Even then it's more likely he would cycle in and out of the court system because of the vagueness of the statute and the high burden of proof necessary for civil commitment.
Marion County District Attorney Paige Clarkson said during testimony in favor of SB 763 that it's a continued source of frustration for the deputy DAs who work for her and handle civil commitment proceedings.
"They see those same folks over and over and over, who everybody in the room can see needs help, but everybody in the room also gets to the conclusion that the statutory standard is not going to allow us to get there," Clarkson said.
"It’s very frustrating for us in the law enforcement process to have to tell their families, 'This isn't enough. You have to wait for them to really hurt somebody. You have to wait for them to really hurt themselves.'"
Clarkson added that it's not a compassionate way to manage the behavioral health population and puts both the allegedly mentally ill person and the community at risk.
Homelessness tied to mental illness
The parents' most recent strategy, at the advice of their psychiatrist, was to squeeze their son financially. But he's managed to adapt.
Their last resort will be to evict him and force him onto the streets, but they haven't quite reached that point yet. Left with limited options, they understand why families give up.
Officials estimate about 25 percent of the local homeless population has a serious mental illness.
"A lot of those people would be productive if they got help," this dad says. "Some don't have access to medication and treatment. Here's a case where our son has access to all the care and his parents would pay anything."
They still worry whatever they do will trigger further suicidal thoughts.
Dr. Wolf offered them some comfort.
"I've been in the field 20 years, and I've never had a case in which a parent had to withdraw support and that led to a completed suicide," Wolf said. "I have had cases where parents withdrew support and it led to homelessness.
"I've also seen it work, where a person in the situation facing homelessness says, 'OK, I'll take the medication.' "
It's still a complicated issue
Bipolar disorder and schizophrenia are both biological disorders. They can be treated with medications, which are gentler today than they used to be.
During a the last mental health conference Bandfield attended, a doctor said during a presentation that 20 percent of individuals with schizophrenia don't respond to medication. She's heard other reports where that number is as high as 25 percent.
The psychiatrist these parents are working with has told them he believes their son would do well on the right mood stabilizers.
But even with the right medication, such disorders often require long-term care.
"Sometimes it takes a year for a person to recover from a psychotic episode," Wolf said. "We don't have places for people to get treatment for a year."
If civilly committed in Oregon, a person may receive involuntary treatment for up to 180 days.
Wolf pointed out most psychotic episodes require at least 12 months of treatment and outpatient treatment is vital because the likelihood of relapse is high in the first year.
For those who can't remember to take daily pills or have a history of discontinuing medication, Wolf suggested court-ordered prescribed long-acting injectables as an alternative. He also suggested those who refuse treatment for mental illness be handled similarly to someone charged with driving under the influence of intoxicants.
"People who've had DUIIs can't get in their car and drive until they blow into a straw," Wolf said. "Why not the same concept? You lose your freedom until you take your medications."
Until other options emerge, parents will continue to fight for their adult children. They will provide for them, offer them guidance, and wish there was more they could do.
"We're just seeing him get sicker," these parents say. "We're just watching him die, basically."
It's heart wrenching to Bandfield and other experts when they hear stories like theirs.
"It's important that we communicate to the community that we know this is hard on families. We are not trying to make that burden harder," she said. "We try everything we can to figure out ways to help preserve those relationships and create safety.
"I think it's a really complicated question ... what's the right thing to do?"
Breaking the Silence
This month, newsrooms across the state are highlighting the public health crisis of death by suicide. Our goal of “Breaking the Silence” is to not only put a spotlight on a problem that claimed the lives of more than 800 Oregonians last year, but also examine research into how prevention can and does work and offer our readers, listeners and viewers resources to help if they – or those they know – are in crisis.
More than 40 newsrooms contributed stories when the project first launched in April. This September media outlets are producing new stories in recognition of National Suicide Prevention Month. When possible, we will promote each other’s stories, and all of them can be found on breakingthesilenceor.com
