Out of the ward, down the aisle

A WEDDING AND HOSPITALIZATIONS

   Chapter 3

In early 2012, Zac stopped taking clozapine, an antipsychotic with many unpleasant side effects. In April, he announced, "I'm crippled," and slipped into bed in the middle of the day. He complained of pulverized ankles, a brain tumor and a broken back. "I'll get up when I'm healed," he told Laura.

He virtually quit eating, because he didn't trust anyone to bring him uncontaminated food, and drinking, because the water supply was poisoned. He used the toilet only if Laura helped him there.

He smelled. He refused to change clothes. His dehydrated lips were crusty and cracked. "I sat by his bed, putting ice chips in his mouth and wiping his face, begging him, 'Make a good decision for yourself. See a doctor,'" Laura recalls. But he was 20. She couldn't make him.

Two weeks later, she slipped out to the courthouse to appear before a judge, who ordered Zac hospitalized for evaluation. Police came and escorted him — shaking, weak, filthy — into a squad car.

Laura Pogliano waits for her son, Zac, outside of his apartment in May.

(Photo: Eileen Blass, USA TODAY)

But he was not treated for another 13 days. There were two hearings at the hospital, one to determine if Zac was competent to make decisions (no) and the other to determine if he was sick enough to be forcibly treated (yes).

Zac spent three months in the hospital. Laura's inability during that time to help plan Leah's wedding epitomized what the mother calls "the sick kid syndrome. He gets all the attention.'' (Two years later, on the day Leah went into labor, Laura was rushing Zac to the hospital.)

In July, Zac was released. He was able to put on a suit and walk his sister down the aisle. He seemed fine.

In August he moved with friends into an apartment.

In October he stopped talking olanzapine, a powerful antipsychotic that he said was making it hard to swallow.

In November, claiming he had spiders in his throat and stomach, he was readmitted to the Johns Hopkins schizophrenia unit. It was his 10th hospitalization.

http://www.usatoday.com/longform/news/nation/2014/11/16/schizophrenia-mental-illness-treatment/18647395/>

'Summer from hell’

’AS HIS WORLD SHRANK, SO DID MINE’

          Chapter 2

In 2008 Zac was having what Laura thought were normal teenage problems. He totaled the car. He quit baseball. He broke up with friends. He smoked weed. She called it "the summer from hell.'' But it was a season that never ended.

The family — Laura, Zac and his older sister Leah — moved to Maryland from a small town in Illinois in 2004. Laura had gotten a good job as a software trainer. They rented a three-bedroom brick townhouse just north of the Baltimore line.

Zac was popular, athletic, musical, charismatic — "a bit of a ladies' man,'' Leah recalls.

That summer, Laura noticed one of Zac's eyes was fluttering. His hands trembled. He lost sense of time. He threw fits over nothing, and broke things. He said he saw no point in celebrating his 18th birthday. He hid in the basement, and covered his face against germs.

His doctor sent him to a therapist, who sent him to a psychiatrist, who sent him to a specialist, who diagnosed obsessive-compulsive disorder. Several experts told Laura the problem was behavioral; she should set expectations and not encourage fantasies.

Zac Pogliano as a third grader. 

(Photo: Courtesy of the Pogliano family)

But Zac's symptoms got worse. He'd sleep 14 hours a day and lie in the shower for an hour under cold water. He was paranoid — hence the knife under the pillow — and when Laura got home from work, the front door always was dead-bolted from the inside.

Once, Zac opened the door but didn't recognize her. Another time, she had to break a window to get in. When she went back to her car a few minutes later, he locked her out again.

After he decided that the family dog was "contaminating" the household, Zac opened the door and let him escape.

Sometimes he stood stock-still in the middle of a room for several minutes. Sometimes he walked with a stiff, neurologically-impaired gait that Laura thought of as "Frankenwalking.'' They were classic symptoms, and the doctor confirmed it: Zac was psychotic.

Laura's employers, she says, didn't accept the constant interruptions and sudden departures. A supervisor dismissively called Zac "Laura's little problem" in front of her team, and privately told her, "No one gives a s---.''

She quit one job, then another and another, to be with Zac, who stayed home from high school more often than he attended.

Her own mental health deteriorated. She had panic attacks, couldn't sleep. She felt isolated. "I wished he still played rugby, baseball. That he still had his old friends. What he gave up, I gave up. As his world shrank, so did mine.''

But, she says, "I told myself I had to get over what I wanted. My attitude was, 'I'll enjoy nothing while he enjoys nothing.'''

She was stunned by the ignorance of mental illness. She was asked how many different personalities Zac had (confusing schizophrenia with multiple personality disorder); if he was a genius (an idiot savant), and, after one of several shooting sprees by a mental patient, "Does he have a gun?''

“My attitude was, 'I'll enjoy nothing while he enjoys nothing.'”

LAURA POGLIANO

Bills piled up — for lawyers (Zac was busted twice for pot and once for heroin), ambulances and co-pays. She had to hire people to sit with Zac when she was working, to drive him to appointments and to do medical and insurance paperwork. "We needed a staff of three to keep a household of two afloat,'' she says.

The disease never went away. If Zac stopped taking his meds — because of side effects or because he felt cured — Laura knew a breakdown was coming, just not when. She asked a psychiatrist what triggers a breakdown. Change, he said: "The stress of daily living.''

 <http://www.usatoday.com/longform/news/nation/2014/11/16/schizophrenia-mental-illness-treatment/18647395/> 

 Chapter 1

The lucky one

DESPITE HARDSHIPS, A MOTHER KNOWS IT COULD BE WORSE

                                                       

TOWSON, Md. — She says she's lucky, even though her son's mental illness has driven her to bankruptcy, sidetracked her career and left her clinically depressed.

She's lucky, even though his illness cost her the time to plan her daughter's wedding and the money to pay for it. Even though her only friends now are ones who accept last-minute cancellations of long-made plans. Even though she can't recall the last time she went out on a date.

Lucky, even though her son has been hospitalized 13 times in six years. Even though he's repeatedly called 911 with fantasies – a gunshot wound, a heart attack. Even though he has fantasies (he's rich), hallucinations (he's being followed) and delusions (Mom is a robot). Even though he's slept with a butcher knife under his pillow.

Laura Pogliano calls herself lucky even though Zac, her dear boy, has lived all his young adult life with schizophrenia.

Her gratitude makes sense only when you consider the state of America's system of mental health care.

In a series of stories this year, USA TODAY has detailed the human and financial cost of caring so little about the nearly 10 million Americans who are seriously mentally ill. It's a cost borne disproportionately by patients' families, and it is crushing many of them.

About 40% of the most disabled mentally ill are cared for by relatives — but not forever. "In the end, most of them bail out. They can't take it any longer,'' says Doris Fuller of the Treatment Advocacy Center, which wants to make it easier to legally compel the recalcitrant mentally ill to accept treatment.

Families can force their psychotic members to enter an institution or receive treatment only by proving they're dangerous to themselves or others. Even then, a shortage of facilities ensures that patients often are discharged prematurely. And families face exorbitant out-of-pocket costs for all but the most basic care.

So Laura Pogliano feels lucky that she's been able to hang in, lucky that Zac is not living in jail or under a bridge.

Count her blessings: Zac's illness developed before he was 18, giving her legal control at the outset. He does not refuse his anti-psychotic medication. When he needs to be hospitalized, he usually does not object or exercise his right to deny Laura access to his medical caregivers and information.

For the past two years most of his medical bills have been covered by Medicare disability. He lives minutes from excellent psychiatric care at Johns Hopkins University. He is not homicidal or suicidal.

Despite her relative good fortune, Laura says she can never move forward because her son never stops dying. "Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.''

Although she mourns the life Zac has lost — sports, pals, girlfriend, college — at 49, she also wonders: "What happened to my life?''

 http://www.usatoday.com/longform/news/nation/2014/11/16/schizophrenia-mental-illness-

treatment/18647395/

Surviving Schizophrenia

"We do not understand why they say what they say and do what they do." Dr. E. Fuller Torrey, M.D.

Dr. Torrey describes the problem with Schizophrenia to be a lack of sympathy. How can people sympathize with a person who is possessed by unknown and unseen forces?

He explains "With sympathy, Schizophrenia is a personal tragedy. Without sympathy, it becomes a family calamity; for there is nothing to knit people together, no balm for the wounds. Understanding  Schizophrenia also helps demystify the disease and brings it from the realm of the occult to the daylight of reason.  As we come to understand it the face of madness slowly changes before us. From one of terror to one of sadness. For the sufferer, this is a significant change."

Where the Police Are Part of Mental-Health Care
Jenny Gold


It’s almost 4 p.m., and officers Ernest Stevens and Ned Bandoske have been driving around town in their black unmarked SUV since early this morning. The officers are part of San Antonio’s mental-health squad—a six-person unit that answers the frequent emergency calls where mental illness may be an issue. 
The officers spot a call for help on their laptop from a group home across town.
"A male individual put a blanket on fire this morning, he’s arguing with them, and is a danger to himself and others, he’s off his medications,” Stevens reads from the blotter.
A few minutes later, the SUV pulls up in front of the group home in a run-down part of the city. A thin 24-year-old sits on a wooden bench in a concrete lot out back, wearing a black hoodie. His bangs hang in damp curls over his forehead.
“You’re Mason?” asks Bandoske. “What happened to your blanket?” Eight years ago, a person like Mason would have been heading to the emergency room or jail next. But the jail in Bexar County, Texas, where San Antonio is located, was so overcrowded—largely with people with serious mental illnesses—that the state was getting ready to levy fines.
To deal with the problem, San Antonio and Bexar County have completely overhauled their mental-health system into a program considered a model for the rest of the nation. Today, the jails are under capacity, and the city has saved $50 million over the past five years. 
These officers seem more like social workers. Stevens says that’s a huge change from his early days on the police force.
The effort has focused on an idea called “smart justice”—basically, diverting people with serious mental illness out of jail and into treatment instead. It is possible because all the players in the system that deal with mental illness—the police, the county jail, mental-health department, criminal courts, hospitals and homeless programs—pooled their resources to take better care of people with mental illness.
In San Antonio and cities across the country, police officers often serve as de facto mental-health workers. When a family confronts an emergency with a loved one in a state of psychosis, they usually dial 9-1-1, and the police respond.
Sometimes the resulting confrontations can have disastrous results, such as a case last year in North Carolina, where police shot and killed a teenager in his home after the family called for help during a schizophrenic episode.
More often, the person ends up in jail. Across the country, jails hold 10 times as many people with serious mental illnesses as state hospitals, according to a recent report from The Treatment Advocacy Center, a national nonprofit that lobbies for treatment options for people with mental illness.
San Antonio’s new approach starts with the kind of interaction Bandoske and Stevens are having with Mason. The troubled young man is hunched over, and his eyes dart back and forth between the two officers. This article uses only his first name because he was in the middle of a mental-health crisis. He mumbles answers to their questions, sometimes stopping to stare at a spot in the distance. For outsiders, it’s hard to know what’s going on, but the officers can tell Mason is hallucinating. Bandoske kneels in front of him, trying to maintain eye contact and get Mason’s attention.
“Are you hearing some voices right now? You are, aren't you? What are the voices telling you?” he asks. Mason is silent, but Bandoske persists. “Hey Mason, you’re seeing something that I’m not seeing. What is it?”
Bandoske, left, and Stevens are part of the San
Antonio Police Department's mental-health squad. 
(Jenny Gold/KHN)
Finally, Mason responds. “I’m seeing Jesus.”
“Jesus and what else? It’s OK, you can tell me.”
“My heart hurts,” says Mason.
Mason acknowledges that, yes, he’s hearing voices. And, yes, they’re telling him to do bad things to himself. Officer Bandoske also spots a dime-size scab on Mason’s face. “Hey Mason, is that on your face from a cigarette? What’s it from?”
“I cut it,” says Mason. “With my finger.”
“Do you ever feel like something is crawling on you?” asks Bandoske. The answer is yes—a sign of tactile hallucinations.
These officers seem more like social workers. Stevens says that’s a huge change from his early days on the police force.
  
“We had absolutely no training 20 years ago in the police academy on how to deal with mental-health disturbances,” recalls Stevens.
Back then, Bandoske adds, police responded to mental-health emergencies the way they would to any other call: They used the tough guy command voice they’re taught to handle criminals. “Police are notorious for the A personality type. They walk into a situation. They gain control of it. It’s their call now. They’re in charge,” he says.
And more often than not, the officers ended up taking people like Mason with serious mental-health issues to jail. “They would be arresting them for just minor misdemeanor offenses such as trespassing or criminal mischief or just disturbing the peace type calls,” says Stevens.
The other option was to take the person to a hospital emergency room. But in San Antonio, the police were waiting an average of 12 to 14 hours in the hospital until the person could to be triaged; that often made jail seem like a much more appealing option. 
There’s still the problem of where to take patients like Mason, other than jail or an emergency department.
“You can book somebody in the jail in 20, 30, 45 minutes tops, especially if you have a partner to help share the paperwork load, and then you’re back out on the streets,” says Bandoske.
The police were arresting the same people over and over again; many not only had a serious mental illness but were also addicted to drugs or alcohol and were often homeless. And whether they went to the jail or the ER, it was expensive for everyone—the jails, the hospitals and the police department that had to pay for overtime while cops waited at the hospital. And it meant that fewer police were available to work the streets.
San Antonio’s response was to require all officers to take a 40-hour course called Crisis Intervention Training, to learn how to handle mental-health crises like the one with Mason. The course includes visits from families of people with mental illness, who come in to tell their stories. And while some officers, like Bandoske and Stevens, specialize in mental health, all learn de-escalation techniques and how best to interact with someone in a state of psychosis.
The effort to train police to handle mental-health emergencies is gaining steam across the country. Fifteen percent of police departments nationwide offer the program.
But even with strong programs, there’s only so much that training alone can do; there’s still the problem of where to take patients like Mason, other than jail or an emergency department.
San Antonio tackled that problem, too.
“I’ll be honest with you. When it first came out, I was very skeptical. I thought, well this is ridiculous. If somebody’s breaking the law, if they’re public intoxication, they should go to jail,” says Bandoske.
People who commit a felony still go to jail, regardless of their mental status. And those who need extensive medical care are still taken to the hospital.
The center is saving the police department at least $600,000 a year in overtime pay.
But for patients like Mason, San Antonio built another option: the Restoration Center—a totally separate facility with a 16-bed psych unit, a medical clinic and a “sobering room” where police can drop off people who are intoxicated.
The Restoration Center was built with cops in mind to allow them to drop off their charges as quickly as possible. There’s a work station for paperwork, free coffee and a nurse available to provide medical clearance for people who are arrested, even those without a mental illness, to save the police a trip to the ER whenever possible. The center is saving the police department at least $600,000 a year in overtime pay.
Restoration Center nurse Catherine Riojas checks Mason in immediately after Bandoske and Stevens arrive with him at the center.
Mason seems more settled now, as she collects all of his property—cigarettes, jewelry and a folded piece of construction paper with a poem. She gives Mason a physical and helps him get settled in the 48-hour inpatient psychiatric unit.
And then, about 15 minutes from the time the police walked through the door of the center, they’re heading out again, ready to get back on the street.
“OK Mason, good luck. OK buddy? Hope you feel better,” Stevens calls to him, and waves. 


Jenny Gold writes for Kaiser Health News. Her work has also appeared on NPR and in the Washington Post.

Mental Health Basics

The images evoked by the phrase “mental health” are too often based on false stereotypes and misconceptions. One of four people suffers from mental illness, but it is not apparent or obvious. Most are certainly not homeless or disabled by a severe psychosis that requires inpatient treatment. Minding Your Mind is fielding programs to dispel false images. We do not stigmatize a child who has severe asthma or juvenile diabetes. He or she is given sympathy, understanding, treatment and support. We should view someone with a mental health disorder in the same context; as someone who has a physical ailment that can be treated successfully given today’s range of therapies. An individual with a mental health disorder is normal, just like the individual who suffers from diabetes or asthma.

Minding Your Mind

STEPHANIE’S STORY

I deal with depression and anxiety on a daily basis, some days being more bearable than others. It can literally hit me from one day to the next. And what's truly amazing is how quick it comes on. It's almost like changing the filter lens on a camera. Sharp and clear become slightly blurred and hazy. Nothing is focused right; my head hurts from straining to get some type of focus back. My muscles become harder to move; slow is the new fast. A new sense of reality sets in and depression becomes so familiar, that it feels just as good as a warm embrace from the people whom I care and understand me the most. Depression becomes home and happiness is a visitor. It’s astounding how comfortable it becomes, almost like a bad habit (and you know what they say about bad habits right?)

And while it all appears so comfy, the scary part is that you can’t get out. Imagine being shoulder deep in quick sand that you didn’t know you stepped in it until just that point. You know you need to get out to stay alive but you don’t know how, because it’s slowly sinking you into oblivion. It seems as though no matter what you do, you’re still sinking. You panic not knowing what to do. The only way you can be saved is if someone reaches out their hand for you to grab or if you stand still and think logically. Then when you’re finally out you swear you will never think like that again, continue on the path of life, being careful and avoiding any signs of danger until….you step into quicksand again.
http://bringchange2mind.org/stories/entry/stephanies-story