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October 01, 2020

Mother’s devotion: Driven to improving mental health care

IU Health Methodist Hospital

Mother’s devotion: Driven to improving mental health care

After years of experiencing firsthand her son’s diagnosis of mental illness, Joan Esterline Lafuze wrote a book about her journey and praises for IU Health psychiatrists who helped treat her son.

By IU Health Senior Journalist T.J. Banes, tfender1@iuhealth.org

In March, when the world began grappling with a novel pandemic, Joan Esterline Lafuze was marking the one-year anniversary of her son’s death. And on her recent 83rd birthday she openly shared a very personal journey that lasted the lifespan of her only son, Robert Lawrence Lafuze.

It was the morning of March 1, 2019 when IU Health Dr. Michael Metrick, treated Robert. Later that day, at the age of 55, Robert died of a pulmonary embolism. His family said the death was sudden. He did not suffer.

But for 37 years leading up to that moment, Robert struggled with mental illness and the stigma associated with brain-based disorders. It was his parents who advocated for change and for proper treatment for their son.

“Robert had very complex psychiatric symptoms. Even as a child, Robert’s chances of survival weren’t great. He overcame a lot of people’s expectations,” said Dr. Metrick, who works at IU Health Methodist in hospital-based behavioral health services. He’s been in practice for 14 years.

Robert’s connection to IU Health began shortly after birth. When his weight didn’t correlate well with his chronological age, his parents took him to Riley Hospital for extensive evaluation. There were other concerns too. His head was disproportionately large for his body. Lafuze and her husband, Ralph, sought answers. When Riley doctors completed their evaluations and gave little hope for his survival, his parents took their son home to love him for as long as he lived.

And love him they did. Joan Lafuze who holds a doctorate degree and is a professor of biology at Indiana University East, wrote a book about that love. The name of the book is “Dad Named Me Robert: Let’s Talk about Mental Illness.”

In one of the early chapters she writes: “Despite medical concerns, Robert was an easy baby. Two of his three sisters had colic, but Robert slept and ate on schedule. He seemed happy to be alive.” Ralph and Joann Lafuze were married in 1960. Robert was the second born. In addition to his parents, his sisters Jeannette Ogborn, Leanne Lafuze Lightly and Mary Comer were also dedicated to his well-being. Ralph Lafuze died in February 2012.

“At the end of the day the uniqueness of Robert’s case was the ability and consistency in the support system of his family to get the resources to advocate for Robert’s needs,” said Dr. Metrick.

When his muscles failed to develop Robert was unable to sit or crawl. By 18 months when he wasn’t walking, the family learned his spine was not fully closed. His pediatrician didn’t expect him to walk or toilet train. But he did both.

Throughout elementary and middle school, Robert was diagnosed with hearing loss and learning disabilities. By eighth grade his parents identified the best match for his education as Muncie Burris, a statewide school associated with Ball State University that met his special learning needs. It was a 45-minute commute from his home in Hagerstown, Ind. Many days, his mom would drive him to school and wait for the building to open at 6:30 a.m. before heading to Indianapolis to teach classes. By his junior year Robert returned to his hometown Hagerstown High School, where his needs were appropriately met. He worked overtime and graduated with his class.

However, it wasn’t without challenges. Robert was 18, and starting his senior year when he and his father were in a car accident. About two weeks later, Robert was admitted to a psychiatric unit where he spent a month locked away. It was the first of many hospital admissions in the years that followed.

“The brain, nervous and endocrine systems as well as interactions between them are complex and even today are not well understood,” writes Lafuze in her book. “Suddenly our family entered the world of brain-based illnesses we call ‘mental illness.’” In the years that followed Robert took anticholinergic medication, but still he heard voices that were silent to others.

Robert was diagnosed with schizophrenia, a mental disorder that caused him to interpret reality abnormally. It was incurable, but treatments helped mitigate the symptoms.

His mother remembers feeling admonished by one psychiatrist who suggested it was because of her that Robert was having a psychotic breakdown.

“I was stunned. I knew what he was saying was not true because I was teaching the physiological facts regarding brain and behavior at the time,” said Lafuze. It was a moment of reckoning. She decided then that she would work diligently to make sure other mothers did not receive a similar message. She also wanted to advocate for change in how health care providers, first responders, and others caregivers view those with a mental illnesses.

“Persons who have brain-based illnesses that we call ‘mental illnesses’ deserve humane loving, care and respect,” said Lafuze. “Robert became ill at a time when students in most health care programs were still being taught that the cause of schizophrenia was faulty family dynamics. The person scrutinized the most was the mother,” she writes in her book. “Today we have shifted toward understanding mental illness as being a brain-based illness with behavioral symptoms.”

IU Health is the state’s largest adult psychiatry outpatient program, offering a full spectrum of adult care. The focus is to study, diagnose, treat and prevent mental disorders.

“Robert’s story is compelling in that he was able to overcome and achieve so much. He is a testament, not only to the power of will, but to the benefits of what a community of support can provide a person with chronic mental illness,” said Dr. Metrick.

He added that accepting and obtaining psychiatric care often means overcoming barriers that include learning who to see, where to go for treatment and what type of treatment is needed.

“Additionally, there exists some continued stigma about receiving mental health. The stigma can be both personal and cultural. However, the culture appears to be changing for the better. We are talking about it more. Many people are more open about their own experiences and acknowledging the importance of good mental health, just like any other medical condition,” said Dr. Metrick.

“We are indebted to all the professional people who have held us in their hands and hearts,” said Lafuze, whose family was a charter member of The National Alliance on Mental Illness-Indiana (NAMI Indiana) and has been active with the Mental Health Association.

“I remember the blackouts, the nightmares that became my ‘daymares’ because they did not go away after Robert woke up. I remember my daymares because I was fully conscious and rational dealing with a system that made no sense,” wrote Lafuze.

“No matter how many good and bad days or painful procedures and hospital stays, his mental illness never silenced Robert’s voice for speaking out to help others,” said Lafuze. “I can almost hear Robert saying, ‘Let’s talk about mental illness,’ because he truly wanted people to understand,” she added.

Lafuze likes to remember the inquisitive boy who was a strong reader and writer. She remembers the young man who enjoyed listening to The Beatles, KISS, Heart, ACDC, and Diana Ross. “We miss Robert but we don’t miss the mental illness. The smile pictured on his face, is something that even COVID can’t dim.”

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