ECHO — Stella Queen has felt the helplessness of watching a loved one slip into the grasp of a mental illness many times in her life.

“Schizophrenia is just rampant in my family,” the Echo woman said. “I’ve asked God many times why he spared me.”

She said her father had schizophrenia, and her brother and grandmother. The illness got her daughter, who died by suicide 10 years ago. It also affected her great-niece, Antonia Cobarubias, who was killed in an unsolved hit-and-run in Hermiston on Aug. 31.

Sitting at her kitchen table on a recent afternoon, she jumped from story to story as she reflected on her journey in trying to educate herself on mental illness and advocate for family members.

The first thing she remembers is reading a textbook in fifth grade in the 1950s that — falsely — stated schizophrenia was caused by the way mothers potty trained their children.

“I raised my hand and asked how that could be and my teacher sadly said, ‘Oh, we were blamed for a lot of things due to potty training,’” she said.

Years later, she tried to ask providers treating her brother what the chances were that her unborn child would inherit the same illness. One hung up on her, she said, while another told her she “wouldn’t be able to understand” if he explained.

Her great-niece, Cobarubias, stayed with Queen on and off after she started hearing voices in her head in her late teens. She said Cobarubias struggled with a drug addiction, but at one point was able to get her own place while staying clean for more than three years.

“I was so proud of her,” she said.

When Cobarubias slipped back into addiction and got evicted, Queen was worried about what her “sweet-spirited” family member would experience while living out in the cold or heat, among people who might take advantage of her. She reached out to law enforcement with her concerns. They told her that as an adult, it was Cobarubias’s right to live where she wanted to.

She got similar answers in reaching out to mental health providers and doctors treating Cobarubias — if a patient hasn’t signed a waiver allowing someone access to their information, they said, the clinic can’t release information about whether they are making it to appointments or what medications they should be taking.

“She went from being really good to going downhill, the difficulty was getting someone to listen to me, because I’m not her guardian,” Queen said.

The situation ended in tragedy, with Cobarubias fatally struck down by a vehicle while she was pushing a shopping cart along Highway 395 in the middle of the night.

It wasn’t the first time Queen dealt with tragedy. She got her daughter, Dawn Marie Eagle, committed to an inpatient psychiatric facility in 2009 after providing convincing evidence she was a danger to herself. But Queen said the facility didn’t notify her when Eagle was released to the facility and returned to her home in Portland.

She also said she had no idea until after her daughter took her life not long after that police had made multiple welfare checks to her home, including an incident where her daughter was dumping gallons of laundry detergent on the floor to “get rid of evil spirits.”

“I say God dumped on her and the system failed her,” Queen said.

Balancing rights and care

The balance between a person with a mental illness getting care they need and maintaining their rights to privacy and independence is a difficult one.

The pendulum has swung toward independence over the last century, moving away from family members being able to lock away pesky women indefinitely for “hysteria,” and into an era where some family members feel it is too difficult to get a seriously mentally ill family member help while they’re in crisis.

“All the confidentiality, all the privacy, it enables the mentally ill to (the point) where there’s no help,” Queen said. “It allows them to get hurt.”

Kristen Owen, a clinical director for Lifeways, which provides mental health services in Eastern Oregon, said people with mental illnesses deserve rights just like someone with a cancer diagnosis should have the right to say they don’t want other people to know the details of their chemotherapy.

If someone is a danger to themselves or others, Lifeways can place a hold on them for up to five days while gathering evidence to present to a judge, who may order in-patient treatment.

“In essence we are limiting their civil rights (during a hold) but there are very high standards to meet,” Owens said.

Lifeways does strongly encourage people to bring family members and other “natural supports” into their treatment process when appropriate, she said. During the intake process for a new client they discuss people in the client’s life who might be helpful, and organizations or other providers who might benefit from getting information on the client’s treatment.

New clients can fill out a form giving blanket approval for sharing information with certain people or organizations, or they can check specific boxes allowing sharing, such as “Information necessary to arrange transportation.”

“It’s pretty customizable,” Owens said.

She said that if someone doesn’t want their family to know anything about their treatment, Lifeways is bound by law to respect that wish. But that doesn’t mean that family members can’t call and share information, even if they’re not getting any in return.

It might seem like their call went nowhere, she said, but behind the scenes a therapist might say, “Your mom called yesterday and is really worried about you. Would you be willing to bring her in here to talk about how she might help?”

Liz Johnsen, executive director of business excellence for Lifeways, said they also have a crisis number (541-276-6207). A majority of the calls through that line are hospitals and law enforcement, she said, but “we want to be that same resource for families.”

“We’re happy to connect them with resources,” she said.

A difficult situation

While Lifeways staff say they’re more than happy to answer general questions on mental illness and share resources for people who are trying to help a loved one, Queen said her experience has been that it’s difficult to get someone on the line.

Queen’s friend, Mary Baggett of Hermiston, who has an adult family member with schizophrenia currently living with her, said she also feels alone sometimes in navigating life with a family member with mental illness.

“I feel like there is no place for me to go or call,” she said.

She said in her case her family member did sign a release with Lifeways, but just because she knows when his appointments are doesn’t mean she can force him to go when he decides he doesn’t feel like it. The same goes for taking medications.

She said family members can also only do so much to protect their loved ones from people who take advantage of them, financially or otherwise.

Most people with mental illnesses aren’t prone to violence — according to the U.S. Department of Health and Human Services’ fact sheet on mental health myths, the “vast majority of people with mental health problems are no more likely to be violent than anyone else. In fact, people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.”

However, sometimes when someone with a serious mental illness like schizophrenia are in crisis they end up doing or saying violent things, frightening their loved ones. Baggett said in that situation it’s especially hard to know where to turn, because family members are worried that they will make things worse for their loved one in the future when they’re doing better.

“You could call the police, but that opens a whole new can of worms,” she said.

Baggett said she’s never used Lifeways’ crisis line before, but Owens said if it’s not safe for someone to transport their family member to the hospital during a crisis, Lifeways staff can come to them.

Baggett and Queen both said they hope to see more resources in the future dedicated to addressing mental health issues in communities, and supporting families who are also affected. It’s something people in the mental health, medical and law enforcement fields have lobbied for as well.

“Lifeways has enough trouble keeping up,” Baggett said.

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