A mother, at wits’ end, sets out to find help for her sick son

San Francisco — Rob Sweeney sucked on an unlit cigarette while his mother stood at the car rental counter, trying to negotiate a better deal.

His legs twitched. His eyes darted right and left. His head bobbed to a beat no one else could hear.

After two airplane flights, he was antsy.

“Want to get some vodka and watch movies in my hotel room?” he asked the stranger sitting next to him.

Rob, 25, has been diagnosed with schizoaffective disorder, a catch-all term for a brain disease that causes a combination of delusions, paranoia, depression and mania. He has spent the past six years churning through Milwaukee County’s troubled mental health system, cycling week-to-week from house to hospital to homeless shelter.

Now he and his mother, Debbie Sweeney, have come to California in a desperate search to find a safe place for him to live.

Rob does things that make his mother sick with worry.

He walks into traffic, spits on people’s cars, yells racist slurs out bus windows, writes suicide notes, puts cigarettes out on his forehead and cuts his arms to make himself feel better.

He imagines people are trying to kill him.

Rob once ran into a stranger’s house in West Allis at two in the morning, convinced he was being chased.

In the past few years Rob has taken to keeping a knife in his pocket to keep the “evil people” away. When Debbie found a butcher knife under his bed, she told Rob he couldn’t stay at home any more. But he still sneaks into her house from time to time and stands by her bed late at night. Debbie has taken to locking her bedroom door.

“That’s what this disease does to you,” she said. “It tears a mother away from her son.”

No one has put these things together in a case file and taken Rob before a judge to say that he needs intensive treatment and supervision. openbookSix psychiatrists who were asked by the Journal Sentinel for their opinion on the best way to care for Rob said this is what should be done.

“He sounds like a powder keg waiting to explode,” said Steven Moffic, a retired psychiatrist who managed outpatient clinics for the Medical College of Wisconsin for 20 years.

Rob does not get any of the treatment the doctors recommended. He does not get therapy. He is not taught coping skills. He sees a psychiatrist four times a year for a maximum of 15 minutes each time, the standard for Milwaukee County’s mental health care.

Like thousands of other people in Milwaukee County, Rob lives in a twilight zone — too sick to make it on his own, not getting the help he needs. A 2009 analysis by the county’s Behavioral Health Division found at least 3,200 people with chronic and persistent mental illness who would qualify for services if they were available.

If the county had the kind of community care available in places like Madison, a team of professionals — a doctor, a social worker, an occupational therapist — would check him daily to provide enough support to keep him safe.

In Milwaukee County, the only option is commitment until he is well enough for community care. Debbie doesn’t know how to make that happen on her own. The system won’t help her figure it out. Instead, she is told Rob has the right to be mentally ill.

Rob actually gets more care than most.

Since 2008, he has been enrolled in one of the 1,264 slots for the county’s Community Support Program, the most intensive level of support a patient can receive short of being hospitalized. A case manager, Steve Seidl of Transitional Living Services, delivers Rob’s medicine, keeps charge of his finances and tries to help him find places to live.

There is only so much Seidl can do.

Unlike most mental health systems — including the one for Milwaukee County’s youth — the adult system does not provide full-service health management for patients. In Milwaukee’s “brokered system,” case managers try to link patients to services for housing and medical care that are provided by other agencies. Case managers have limited authority. Families find it impossible to learn who is responsible for what.

In Rob’s case, his mother and caseworker, who declined to be interviewed, are often at odds.

Email from Seidl to Debbie:

“I don’t think Rob should continue to be rewarded for his not cooperating with treatment.”

Debbie to Seidl:

“I don’t rescue him Steve…he shows up at my house, repeatedly, because you won’t find him a place to stay. He can’t be homeless!!”

Seidl to Debbie:

“He tells you things to manipulate you, tug at your heart strings and make you feel sorry for him.”

Debbie to Seidl:

“This is ridiculous that he is mentally ill and has no place to sleep. He has no food, he doesn’t even have his medicine!!! At the very, very least you should be driving out to him to give him his daily medication.”

Rob had a mental breakdown midway through his second semester of college, a time many mental illnesses emerge, especially in men.

In the six years since, police have hauled him to Milwaukee County’s psychiatric emergency room at least 12 times. He stays in the hospital for a few hours, or a few days, depending on what he wants or what his insurance coverage will allow, then he’s back on the streets.

Rob can’t find a landlord in Milwaukee who will rent to him anymore. He makes too much noise and too much mess. He’s been kicked out of homeless shelters for breaking curfew and smoking cigarettes. He lives out of motel rooms — when he can afford it and where they will allow him — with money from his federal disability account. Or he sleeps under bushes or begs his mother to let him sleep on her couch.

Rob Sweeney, shown here in 1996, has long dreamed of living in California — ever since visiting his grandfather in Los Angeles. He struggled in school, but always excelled with computers and hoped to work in Silicon Valley when he grew up.

Debbie knows it’s not very logical to travel across the country where they don’t know anyone, hoping to find some kind of answer to this very complex problem.

But Rob has talked since he was in grade school of moving to Silicon Valley to write programs for computer games. California could offer him a change of pace, a clean slate, the chance to realize his dreams. Maybe he will accept treatment there.

“I know it’s a little crazy,” Debbie said. “But there is nothing for him here.”

An executive assistant at a downtown insurance company, Debbie has planned for this trip since September. She clipped coupons and shopped for specials. She set aside most of her vacation days and dug into savings.

In February, she paid $483.60 for airfare for herself and Rob to San Francisco. She booked a room for them for nine nights at the Ramada Inn in Sunnyvale, near San Jose, and scoured the Internet for programs there for people with mental illness.

They would leave April 22.

Debbie hoped to come back to Milwaukee alone May 1, but bought a round-trip ticket for Rob, just in case.

Her fiancé encourages her to do what she thinks is best for her son. Her daughter sends her emails of comfort.

But this trip is Debbie’s lonely burden to bear.

A right to be mentally ill

Twenty years ago, Debbie might have had more allies. The National Alliance on Mental Illness was founded in Madison in 1979 after the state changed its commitment laws and thousands of patients who had been hospitalized were released, often to the streets.

The group was designed to help families navigate the new system and advocate for safer care. But in recent years the Milwaukee chapter has served as more of a patient advocacy organization, fighting changes to state law that might make it easier to compel unwilling patients into care — including those who don’t understand what is wrong with them.

The law allows family members or others to make their own case that a loved one should be committed for care. But it is rarely done, since the standards are so difficult to meet.

NAMI has helped Debbie learn about the symptoms of her son’s illness, but no one has helped her figure out how she might take his case to court to get him the intensive treatment doctors say he needs. The six psychiatrists each say community care is not enough for Rob right now. He can’t cook for himself or do laundry and doesn’t know how to avoid dangerous situations. He needs to be stabilized and supervised, the doctors say.

“How do you even do that?” Debbie said.

The way the system is designed, it’s Rob’s decision if he wants treatment or not, or if he will take his medicine. He hates Zyprexa, the medicine that makes the voices go away. It makes his arms and legs feel heavy, like he’s swimming in a pool of oatmeal.

He often refuses to take it and starts to hallucinate within hours. Debbie has suggested to Seidl, the caseworker, that they try a different drug — Clozapine.

Seidl agreed that it is the most effective medication available. Still, he shot down Debbie’s idea.

“The only way we could venture a trial of this without Rob’s approval and to do it most safely would be in an extended in-patient stay, and he was on a Commitment, neither of which is a likely scenario for Rob at this point,” he wrote in a recent email.

Case managers have told Debbie that her son has a right to be mentally ill; Debbie doesn’t understand that. Why would anyone want to be terrified the way Rob is when he imagines people are chasing him or getting inside his brain? Why would anyone want to be too scared to get out of bed? Or to be kicked out of the library for vagrancy or stopped by police for walking down the street?

The other day Debbie found Rob lying on the bathroom floor crying.

I’m sick, Mom, he told her. I’m so sick and I can’t think straight.

Rob is getting worse.

“I am slowly watching my son die.”

Early signs of trouble

Rob, the oldest of two children, was born in distress. As a baby, he was fussy, startled easily and wailed at the slightest noise or touch.

Rob Sweeney was born July 16, 1987, after a frantic delivery. Debbie had been in hard labor for more than 12 hours when the lines on the fetal heart monitor jumped, showing signs of distress. The doctor called for a forceps. They would have to hurry.

His father stood waiting to cut the umbilical cord, but a nurse whisked the newborn away to a warming table in the corner. He was blue and not breathing. Debbie lay nearby, heart pounding, waiting to hear her baby cry.

“Once he started, he barely stopped,” she said.

Rob was a fussy baby. He startled easily and had trouble nursing. He didn’t like being held and wailed at the slightest noise or touch.

“I couldn’t put him in anything with wool or corduroy,” Debbie said. “It had to be real soft.”

Rob was 3 the first time he got in serious trouble.

At age 3, Rob was diagnosed with attention deficit hyperactivity disorder after an incident in which he threw a chair over a balcony at Hales Corners Lutheran Pre-School. School administrators said he couldn’t continue there. Here he is shown with angel wings as part of a performance at the school.

He threw a chair over the balcony of Hales Corners Lutheran Preschool that landed a few feet from where other children were playing.

No one was hurt, but school administrators said Rob could not continue there. They didn’t have the resources to handle a child with his problems.

Debbie begged them to reconsider. She was raised Lutheran and wanted her children to go to Lutheran schools. She liked the values they taught — do unto others as you would have them do onto you.

We’re going to start seeing more and more of these crack babies, one of the teachers told her.

Debbie was shocked; she had never taken drugs.

This was the first of many humiliations she would learn to endure.

Debbie stopped going to church.

She took Rob to see a psychiatrist who diagnosed him with attention deficit hyperactivity disorder and put him on 5 miligrams of Ritalin three times a day, a dose he maintained for the next ten years.

Once Rob got to school, administrators developed an individualized education plan for him and assigned a team of teachers and social workers who met regularly to review his case.

One of the school counselors suggested Rob might have autism, because of his poor ability to relate to other people, but the idea was dismissed, Debbie said, because Rob scored so high on intelligence tests.

By eighth grade, he refused to take the Ritalin, too embarrassed to go to the school nurse for his midday dose.

“We noticed the difference immediately,” Debbie said. “Even his handwriting changed.”

It seemed like he got into trouble every day, for lipping off, forgetting to turn in his homework, fights on the playground.

Debbie and her husband divorced when Rob was 7. She wrote off a lot of the bad behavior as an effect of trauma from the breakup. Three years ago, Brian Sweeney moved to Florida. He rarely sees or talks to Rob.

Rob, at age 6, participated in T-ball, but was never much for school athletics or activities. He had trouble concentrating and lacked dedication. Instead, he and his friends enjoyed playing computer games.

Rob never was much for soccer or baseball or swimming. He wasn’t able to concentrate. He didn’t have the dedication or the discipline to practice.

Computers were his passion.

He and his friends would spend hours at the local computer store building their own networks and playing games. Rob struggled in his other classes, but soared in computer class. During his senior year, he took classes at ITT Tech, a private college offering classes in computer technology and engineering.

Rob made it through Whitnall High School with just enough credits to graduate in 2005. Debbie had high hopes for him studying computers at the community college in Shreveport, La., where her mother lived. Rob moved in with his grandmother, but the arrangement only lasted a few weeks.

“It was a disaster,” Debbie said.

Debbie traveled to Louisiana to get him settled in his own place.

The following spring, she got a call from Rob saying that he couldn’t think straight. He was hearing voices. He drove himself to the nearest hospital, where they admitted him to a locked psychiatric ward.

Three days later, Debbie got a call from a nurse saying Rob had sneaked out.

Debbie tried to get Rob to go back to the hospital. Instead, he got into his car and drove back to Milwaukee, pulled over by police outside Chicago for driving 118 mph.

For the next several months, Rob lived at home in Franklin and worked a variety of jobs — fast food restaurants, phone sales, yard crews. None of the jobs lasted more than a few months. Debbie recently counted 28 places where he had worked since high school.

By the summer of 2008, the voices in Rob’s head had become more menacing.

“He thought the cars were talking to him and that there was someone hiding in the backyard playing a drum,” Debbie said.

He moved to an apartment on W. North Ave. in Milwaukee with a friend from high school.

One day, Debbie got a call from Rob’s roommate saying Rob was lying on the couch laughing uncontrollably and not making any sense. Before long, he started to imagine that the man next door was controlling his brain. He was petrified and refused to get out of bed.

Debbie persuaded Rob to go to the hospital for a few days. Eventually, he was enrolled in the county’s targeted case management program. As he grew sicker, he was put in the most intensive program the county offers. The federal government declared him to be disabled and awarded him monthly payments of $880.

Debbie resolved to learn all that she could about ADHD and schizoaffective disorder and brain synapses and medication levels. She signed up for parent education classes.

“In the end, he’s my responsibility,” she said.

California air

Maybe this trip to California would shake something loose for Rob. Maybe someone would take pity on him and give him a chance.

If nothing else, maybe Debbie could get Rob’s federal disability benefits transferred to California and find a group home there that would take him and where he would obey the rules.

She had to do something, and this was the last thing she could think of.

“If Rob kills himself, which he’s talked about a lot lately,” she said, wiping the tears from her eyes, “I have to know that I did all I could for him.”

At the airport’s car rental counter, Debbie decided on a white Jeep. She’d dreamed of tooling around the West Coast in a convertible, but couldn’t afford it. Dinner most nights of the trip would be a bag of nuts from Costco, a power bar and a bottle of soda.

They rolled down the windows and took off in search of the motel.

“Oh, man, feel that air,” Rob said.

His mother giggled.

“It’s 71 degrees at 9 o’clock at night,” she said, glancing at the car’s temperature gauge.

Everything seemed better here.

“I’m going to get a job and make $500,000 a year and go to college,” Rob declared. “And I’m going to hang out with movie stars.”

But first, a stop at the liquor store.

Rob grabbed a six-pack of vodka lemonade and a pint of rum.

Debbie knew it was not a good idea for Rob to mix alcohol with Zyprexa. Still, what 25-year-old man doesn’t want to cut loose a little? “That better last the week, honey,” she said.

Unsettled mission

Debbie woke up that first morning in California ready to roll. Rob was another story. For all his bluster the night before, he just wanted to sleep.

She tried coaxing him for hours, but he wouldn’t budge.

Finally she got him in the car to look for lunch. They pulled into a nearby shopping mall in search of Taco Bell, Rob’s favorite restaurant. But the best Debbie could do was a sandwich shop that served hummus and sprouts and carrot juice.

“This is California, Rob,” she said. “They eat healthy out here. You better get used to it.”

While Debbie went inside to buy the food, Rob paced the parking lot.

Back and forth. Back and forth.

When Debbie returned, he grabbed his food and found a spot by himself at a far-away table.

“You want anything else, Rob?”

He shouted over his shoulder:

“Yeah, I want a house and Porsche and $500,000.”

Throughout lunch, Rob badgered Debbie, shouting across the patio: “Take me back to the motel.”

Eventually, Debbie relented. Angry that the swimming pool was closed for repairs, Rob headed straight back to bed, slamming the door in Debbie’s face.

The motel is about 20 minutes from San Jose, where Debbie had researched their options.

“It’s supposed to have some of the best mental health care in the country,” she said.

Debbie had talked to a case manager for Santa Clara County’s mental health agency who said a move might work, especially because Rob was on federal disability. The case manager talked of getting Rob a job, even gave Debbie a list of agencies and places to live.

How this was reported

To report this story, Journal Sentinel reporter Meg Kissinger traveled with Debbie Sweeney and her son. Rob, to California from April 22 to May 1. Kissinger returned with Debbie Sweeney from May 18 to 20.

All descriptions of scenes and conversations were witnessed by the reporter, or reconstructed through detailed interviews with Debbie Sweeney and other participants. For instance, phone conversations that are described typically were conducted by Debbie Sweeney on speakerphone. Where Debbie’s thoughts are included, they were expressed out loud at the time or described in detail.

In addition, Rob Sweeney’s medical history was provided by Debbie Sweeney, with his permission. Likewise, Debbie Sweeney provided extensive notes she has compiled over the past six years on where her son has lived, when he has been hospitalized, and her own email correspondence with his Milwaukee caseworker, Steve Seidl, and others.

But as the trip drew closer, the woman — Victoria — was less specific about how it all could be done. Now she wasn’t returning Debbie’s calls.

Debbie set out for downtown San Jose to find her. She found the office, a 10-story building in the midst of a huge medical center campus. She stood before the lobby directory, scanning it for Victoria’s name.

No listing.

She tried calling. This time Victoria picked up.

“We’re here in the lobby,” Debbie said.

Victoria refused to see her and wouldn’t tell Debbie what her office number was.

“It’s confidential,” Victoria said.

She gave Debbie the names of drop-in centers she could try.

On her way back to the car, Debbie’s cellphone rang. It was Rob.

“Want to know what I figured out, Mom?” he said. “It doesn’t matter if we’re in a crappy motel room. I’m lucky we’re here at all. This is costing you a lot of money.

“Thanks, Mom. I love you. Stay safe.”

Debbie smiled.

“Just when I’m ready to kill that kid, he does the sweetest things.”

Chapter 2: The run-around

A mother, at wits’ end, sets out to find help for her sick son – JSOnline.

Jimmy Kilpatrick, a national recognized professional special education advocate since 1994.

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