To save others' lives

Annette watched her son deteriorate from schizophrenia. His death changed the course of her life forever.



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Annette Kleinhenz is a part-time nurse at Columbus Regional Health in the psychiatric unit. She is currently taking classes at IUPUI to earn her master's degree and become a licensed nurse practitioner. Kathryn Moody Buy Photos

How do you do what you do, Annette?

People have asked her that before.

She is over 50 and has 11 kids and five grandkids and is earning her master’s degree and teaches in the lay ministry and works part-time as a nurse and teaches nursing clinicals and, sometimes, a class for families dealing with mental illness, and she does it because she lost her son twice.

How do you do what you do, instead of letting grief swallow your whole life? You stand up and realize that God is calling you to fix something. That’s how.

Annette Kleinhenz lost her son, Caleb, four years ago. But he had already been ?fading.

Schizophrenia had dropped in like settling dust some nine years before that, smothering his relationships, his emotions, his grasp on reality.

It wasn’t supposed to happen to him, one of God’s golden sons. He played sports, studied hard and wrote with a wit that shocked his own mother.

Schizophrenia doesn’t care about that.

Annette sits at the head of the conference table, relaxed but authoritative, a practiced role, wielding a laptop with a PowerPoint called “Helping Children Through Loss.”

In February 2011, her family lost ?a grandfather.

One month later, Caleb killed himself.

Pictures of Caleb appear on her screen. This clinical is specifically about mental illness, and his story is part of the lesson. But it doesn’t matter how much practice she gets telling that story or where she starts. The tears bubble out, throttling her voice.

“He looks like Val Kilmer,” she says, joking. And then she adds, wistfully and quickly, straight to the laptop: “I just miss him so much.”

Does she want to be here, doing this work? The question is irrelevant. The answer lights up her laptop screen.

People need people like her, desperately need people like her, so much that they are dying despite support systems and medicines and therapies. And so here she is, doing the work.

Caleb’s death made a lot of things simple.

***

Annette hates paperwork. She would rather teach, work hands-on, than write prescriptions all day. But she is going to IU- Purdue University Indianapolis to get her mental health nurse practitioner’s license specifically to do the work she likes least.

Prescribers are in short supply. There are only 280 psychiatrists in Indiana, a state with more than six million people. That’s one for every 28,000 people. The psychiatrist in her hospital sometimes must limit his time with patients to 20 minutes each.

One in four people will experience a mental health issue in their lifetime, according to the National Alliance on Mental Illness. One of 100 people on the IU campus may become schizophrenic, said Dr. Bill Hetrick, chair of the psychology department at IU. That’s 400 people on this campus at risk.

When an ill person does get to a doctor, the treatments, fraught with stigma and misconceptions, can strip their self-esteem. Medications produce an altered state, said Ron Masters, a licensed clinical social worker in Bloomington. If the medications aren’t managed right, the afflicted don’t feel free — they feel regulated into a sterile nonexistence.

Many critical patients must wait two months to see a psychiatrist, Annette said, forcing some family practitioners to become front-line prescribers when their time with patients is already limited.

Not everyone with a mental health issue needs medicine or a psychiatrist, Masters said. But Masters, Hetrick and Annette all agree professionals are spread thin. Annette calls it a hands-on, heart-on profession. Burnout is high.

“Why am I even doing this?” she says with a laugh.

Because she’s been as close to mental illness as a person can be without having it herself.

Because she remembers all the doctors, good and bad, and knows she must pay it forward.

If there’s another mother’s Caleb out there, she would want him to have a nurse like that.

***

Caleb was the Big Brother, capital B.

In many of his pictures, Caleb is holding the newest baby. He set an example for his friends. During boyhood, he would kneel by his bed at night and pray without being asked.

He was also fearless — a well-intentioned troublemaker. He’d talk to any girl, said Sam Abrams, Caleb’s childhood friend. Do backflips off bridges into water when everyone else would simply jump.

He went to Brigham Young University, accepted as an honors pre-med student, ready to study psychiatry. Annette still doesn’t know why, of all professions, he chose psychiatry.

He was also preparing for his mission. As a young Mormon man, Caleb looked forward to his mission his whole life. At 19 years old, he’d be sent to Taiwan — right in the midst of a horrific typhoon season.

Annette, her husband, Larry, and the recent baby flew to Utah to see him before he started missionary training. During the few days the family spent with him, Annette felt something was off. As if he wanted a way out. Later, he would say he was afraid to touch people, afraid to leave his DNA. In pictures you can see his hands cramping into claws.

She cried for two hours after dropping him off. Later, another mother at the airport called her and said cheerfully, “Annette, he is so focused!”

But that was not the easy-going, breezy, do-his-homework-in-the-bathroom-before-class son Annette knew.

While in Taiwan, Caleb became fully psychotic. He left his mission one year early, lost.

At home one morning, Annette pulls out a poster board with tacked-on pictures of Caleb. She gazes at one photo of him looking shyly toward the camera over a flooded street in Taiwan. She puts a hand to her mouth thoughtfully. “His eyes look so odd.”

The golden boy was gone. Disappeared.

***

Just above the kitchen table in the Kleinhenz house, there is a painting of 14 pairs of feet.

Jesus’ sandals are at the front. Right behind mom’s red heels are Caleb’s size 10 ½ white slippers.

Back when Annette first attended IU in 1978, she wanted to be an obstetrician. But two years in, she got married and had 11 kids. The time was right.

When she went to nursing school in 2010, even when Caleb was in the midst of his life with schizophrenia, she was convinced obstetrics was for her. Having been pregnant for 99 months, she felt like she understood babies.

Things changed when Caleb died her second semester in.

When her son was alive, she had amassed papers filled with handwritten names and phone numbers of people in NAMI and the Depression and Bipolar Support Alliance. She’d gathered the intel, attended the meetings. She tried to stay away from mental health, but it was following her.

She realized she was running away from something God had intended for her to do.

So she got a nursing job in the same hospital Caleb had been admitted to toward the end of his life.

She cares for up to nine patients in an eight-hour shift. She listens to them, between the paperwork and charts. She barely has enough time to stuff food in her mouth. She doesn’t sit down.

She tries to be the one who listens when her patients struggle with stigma. Those in the hospital struggle with their families and each other.

“People think ill people don’t have anything important to say,” Annette said.

The worst part about mental illness, she said, is losing your credibility.

Sometimes patients approach her in public. “I know you cared about me,” one woman said in the middle of the mall, grasping Annette’s hands. “I know you cared because you wanted to cry when I cried.”

***

You could say Caleb lost his mind, but the metaphor falls flat — Caleb lost his station as caretaker, his sense of personhood, his belief in God. He struggled to rectify the world he saw with kind eyes and the voices telling him to die.

He nailed up $600 worth of sound blankets around his room to block the voices out. He stayed up all night to ensure the sun would rise. One delusion drove him to sandpaper his teeth. When he emerged from it, he was sickened by what he’d done to himself. At one point, he made his Facebook picture a photo of an anencephalic baby born in Nepal. That’s how he felt about himself, Annette said. A freak, exposed.

Annette is careful to say that for many, medication saves lives. For the years Caleb was on medication, it felt like he’d rejoined the tribe. He’d no longer walk in tight circles, trying to sort out his manic energy.

Caleb tried 11 different medicines. Only one addressed both his hallucinations and his intense apathy brought on by schizophrenia. He had to take it twice a day.

Hard to do when, like most with schizophrenia, you don’t believe you need it.

At Christmas in 2009, he announced he would stop taking his meds because he felt like he was eating more pills than food.

After that, the schizophrenia pulled him further and further into psychosis. The delusions grew grander. He believed he was part of a computer server he was trying to build.

In August 2010, Annette and Larry drove between Columbus, Ind., and Bloomington to find a prescriber who would give Caleb medicine.

Hospitals said they couldn’t help because he wasn’t an immediate danger to himself or others.

Finally, a hospital in Columbus saw him. The nurses pulled the parents aside. Caleb needs to be admitted, they said. Please be OK with this.

The family had supported him for eight years without hospitalization. But they said OK.

Annette remembers vividly when Caleb caught on. He started yelling. He cussed at her, something he’d never done before. He knew he needed medicine, he could recognize that now, but hospitalization came like an insult.

Since the discovery of antipsychotic drugs in the 1950s, fewer people are institutionalized for life, Dr. Hetrick said.

Short-term stabilizing hospitalizations, as Caleb experienced, are now the norm. Despite the side-effects, medicines treat the hallucinations and delusions fairly well, Hetrick said.

But 74 percent of those in treatment stop or change treatment within 18 months.

Mental health and physical health are treated as separate entities, rather than together, as they should be, he said.

Many with severe mental illnesses die sooner from poor physical health, Annette said. Until recently, Annette avoided convenience stores. They reminded her of Caleb buying cigarettes and Polar Pops to try and escape the stillness imposed by his medicine.

The culture of medicine is changing slowly. The Medical College Admission Test, the test that students take to get into med schools, is 40 to 60 percent on psychological concepts.

Annette knows now the scariest part of hospitalization is that no one outside of the psychiatric unit knows how the process works. To them, it’s an alien place. Many families don’t realize they can visit or ask questions of the nurses there, even though the nurses encourage it.

One day, when Annette was sitting with Caleb in the solarium, she noticed his shoe ties were made from zip-ties.

He looked away, embarrassed.

On some level, he knew how bad he was, Annette said. He felt stigma against himself. Caleb was watching from inside the whole time.

***

After dinner, Annette takes her younger daughters and future daughter-in-law, Hillary, to the living room to watch Caleb’s funeral video.

It’s been some time since she watched it, but she feels that the time is right to pull it out again.

“Send Me On My Way” by Rusted Root starts playing.

Well, pick me up with golden hand

I may see you, I may tell you to run

You know what they say about the young

She crosses her arms across her chest and puts a hand to her mouth. “These songs remind us of him so much.”

She doesn’t like to talk about exactly how he died. “It’s sacred,” she says quietly.

It was in a public place, in the middle of the day.

His death is painful to remember. Larry, the brothers and close family friends dug Caleb’s grave as a way to cope. But the funeral was, in many ways, one of the happiest days they’d had in a long time.

Friends and teachers of Caleb’s spoke to his wit, his kindness, his strange wisdom.

Her first daughter, Megan, shared her own wisdom with Annette not long after.

“If he died in a car crash, the focus would have been on psych meds and driving. If he’d overdosed, the focus would have been on drug use and mental illness.”

Instead, he’d died in a way that focused the conversation on mental health care.

Her beliefs tell her this was the plan of God and had been the plan from the beginning. Mormons believe their spirits have existed for all of time, and they come to experience life as a mortal to learn and bring back wisdom, passing back through the Veil after death.

She believes, most of all, she knew Caleb before they both came to earth. That she signed up to be his mom, knowing what would come.

One memory of her life before Caleb stands out. She’d been driving, pregnant, and suddenly she knew — her son’s name was Caleb. A spirit was whispering to her, she said. Her son would be named Caleb, and he would teach her great spiritual truths.

Well, whatever spoke to her that day, she knows now it wasn’t wrong.

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