Man shares struggle with schizophrenia – Mother is critical of mental health services

From The Dalles Chronicle, April 30, 2013

For awhile he thought he was a grizzly bear. Recently, a sore on his back caused him to first think his spine had disappeared, and then that his mother had stabbed him. These are just some of the delusions of a local man, “Stewart ,” who began exhibiting signs of schizophrenia at 17.

Today he’s 21, and his mother, “Sally,” is critical of local mental health counselors who she feels gave up on her son twice over the intervening years. (The Chronicle is giving the pair pseudonyms to protect their privacy.)

Further, she claims they didn’t tell her until this January – after working with her for years – about other available services from their agency, the Mid-Columbia Center for Living.

She said a promised follow-up call on those services, which included in-home medication checks and help seeking housing, hasn’t happened.

“My son’s not violent and going to go out and kill a bunch of people – yet. But who knows what kind of idea he could manifest, watching a movie?” Sally said.

Sally – who works full-time and has three other children at home – feels overwhelmed with Stewart’s care and resents that she’s had to seek disability income and housing for him on her own, which were both difficult.

“It’s something, to me, they should’ve done for him,” she said.

The Center for Living’s executive director, Barb Seatter, sympathizes with the mother.

“It’s absolutely exhausting” for parents of mentally ill children, Seatter said. “In fact, the parents need help, and where are the resources for them?” But Seatter said the mental health system is historically underfunded.

“We do assume that if someone has family support that the family support will be utilized,” she said.

While her staff doesn’t help people fill out paperwork for services, they do drive them to the appropriate offices. She doesn’t know why that didn’t happen earlier for Stewart. Seatter said she also didn’t know why follow-up calls weren’t made after the January meeting – she said it’s possible they just called Stewart directly, since he’s an adult, and didn’t contact Sally – or why Sally wasn’t told earlier of the in-home medication check service.

Seatter added, however, that only a handful of people are helped to the degree of a home visit. Most people getting medication are asked to come to the Center for Living to take it.

Stewart had “always been inappropriate,” his mother said. But in his late teens, he became fixedly angry at her for having him circumcised at age five so he would fit in with his stepfather.

He finally had a breakdown just before his 18th birthday. At the hospital, Sally heard schizophrenia mentioned for the first time.

Local mental health officials recommended Stewart get inpatient treatment in Bend. But once there, a psychiatrist talked to him for 15 minutes and declined to admit him.

It was Sally’s first introduction to the difficulty of getting help for her son.

The first impediment is the sheer lack of beds for treatment. Second is the law itself, which allows mentally ill adults to decline treatment. They can only be involuntarily held if they’re threatening – with a specific plan – to kill themselves, or to hurt others. Stewart knows the rules and is careful not to say those “magic words” to officials, Sally said.

Having just learned from counselors she could get guardianship of him – and force him into treatment if a counselor recommends it – she is pursuing that.

After being sent home home from Bend, Stewart, still bitterly angry with his mother, went to live with his grandparents.

He started a Center for Living program called Early Assessment and Support Alliance.

It’s for young people just diagnosed with schizophrenia and its goal is to prevent expensive hospitalizations.

Stewart was promised weekly outings, his grandmother said, but ended up just eating lunch and playing video games. He soon quit going.

Sally feels the system is “backwards,” in that they expected her son to be actively engaged before they’d offer him additional help, such as getting him employment. But she feels he needed their help first in order to become engaged.

Counselors, meanwhile, said Stewart lacked interest in services offered and didn’t participate in therapy.

“We are definitely educated and have experience in working with and engaging people who are mentally ill,” Seatter said. “That’s what we do.” But sometimes, she said, they just can’t reach someone.

The EASA program, which is intensive and offers many hours of service, has room for six clients.

“Success stories include people being able to leave their homes for the first time in years, to some getting part-time jobs, GED’s and driving,” Seatter said.

If clients stop going, the center tries to reach them, via phone, letter, or even going to their home, she said.

Seatter encouraged Sally and others to come to a public comment meeting the Center for Living is having on May 13 in Hood River.

The agency is looking for feedback from the public – particularly consumers – on how it can improve its services. The meeting is set for 4 to 7:30 p.m. at the Gorge Room at the Hood River Inn. Dinner will be provided. Attendees are asked to RSVP to (541) 296-5452, ext. 7620 o r e m a i l: One of Sally’s biggest struggles has been convincing Center for Living that Stewart’s problems weren’t drug-related.

In March 2011, the center told Stewart he had a substance abuse problem, not schizophrenia, and was therefore being removed from the EASA program. They encouraged him to get drug and alcohol treatment. Sally found the letter “appalling.” She said his unresponsiveness was part of his illness.

Counselors are well aware of drug use as a means of self-medicating, and even list it as a sign to watch for in diagnosing mental illness .

Perhaps muddying the waters in this instance, his grandmother admitted she was in denial about Stewart’s real problem, and insisted to counselors early on that he only acted crazy when he was smoking pot.

She simply couldn’t accept that her smart, caring, athletic grandson was now “a lost soul.”

She cried as she recounted how he gradually slipped away into his own world.

After 18 months with his grandmother, Stewart moved back home about 18 months ago, and things slowly worsened. He had long ago quit his occasional pot use, Sally said, so she knew it wasn’t drugs. He had many bizarre behaviors, including being unable to stand the pictures in the house. He would take them down and turn them around.

He began seeing a private psychiatrist, who diagnosed him with schizophrenia and started him on medications, which are still being adjusted.

There were no guns at the house, but Sally’s husband began hiding knives. Her other children, especially her teen daughter, were terrified of him.

In early 2012, Stewart and Sally re-enrolled in the EASA program, but again ended up not participating, despite “multiple attempts,” the center said, to engage him. In August 2012, after calling and writing and getting no response, the Center for Living removed them from the program.

Sally admits she gave up on the Center for Living. She said the dismissal letter from the Center for Living noted Stewart was “unable” to follow through on job opportunities. She said Stewart was unable to because of his illness, and felt the program should’ve helped him with follow-through.

This past January, two incidents made Sally realize Stewart couldn’t live at home anymore.

First he beat up the family dog as it was chewing on a toy, because he believed it was gnawing on his sore back.

Then, a neighbor was using a chain saw, and the sound made Stewart think his mother was stabbing him in the back. He called police .

That brought the Center for Living back in the picture. A treatment bed was found for him in Umatilla. He went voluntarily, then quickly bailed. He agreed to go back, but they wouldn’t take him a second time. While Sally arranged an apartment and disability income for him, he came home for three weeks, which gave her fearful family “fits.”

Though he’d like a job more than anything, he’s too ill to get one. So he stays in his apartment all day watching TV. He’s still seeing a private psychiatrist.

Fearful Stewart will lose his apartment, Sally cleans it, takes him shopping, and makes sure he takes at least one of his two daily doses of medicine. She’s pretty sure he’s not taking the other dose.

She worries she’ll be his main caregiver for the rest of her life. She wonders who will take care of him when she dies.

She said in most cases like this, the mentally ill person ends up homeless because the family can’t cope anymore and kicks them out. She’s fighting hard for her son, and wonders what happens to people who don’t have a strong advocate like her. “It’s scary and sad, and I don’t really know where to go,” she said.