Stories from the front lines of Iowa’s mental health crisis
On April 16, I wrote an essay for the Register about the deaths of my neighbors — Mark, Charla, and Tawni Nicholson — and about their mentally ill son/brother Chase, who has been charged with murder in their deaths. I wrote the essay simply to express my sadness and anger over this family’s struggle to get Chase help in the dysfunctional Iowa mental health system. But in the days that followed, the response from readers across the state was overwhelming. My email inbox was flooded with messages from families just like the Nicholsons, desperately trying to get help for their mentally ill loved one but facing hurdle after hurdle. I heard from parents who’d lost a child to suicide, a daughter whose once-successful father suffers from schizophrenia and is now in jail, and a pastor who dealt with the suicides of two mentally ill parishioners in one year.
I had to do more.
Three Iowa families generously agreed to share their stories with me — to open up about their lives, their struggles to get treatment, their fears and hopes for their mentally ill loved one, and what they wish everyone knew about families dealing with mental illness. I’m humbled to now share their stories with you.
The Carpenters: A wish list of changes
Leslie and Scott Carpenter live in Iowa City where Leslie is a physical therapist in an outpatient practice and an adjunct associate with the physical therapist education program at the University of Iowa, and Scott has a Ph.D. in geochemistry and is technical sales representative for Olympus Scientific Solutions.
But all of their education and training failed to prepare them for the challenges that would forever change their family, when in 2008, Leslie and Scott’s life split into two parts, Before and After, with a telephone call. Their then-16-year-old son said he was leaving school one afternoon because he wasn’t feeling well. By that night, he verbalized his first of many serious suicidal intentions and was briefly hospitalized.
His diagnosis has evolved over the years, from depression and anxiety, to bipolar type 1, then manic psychosis, and finally to schizo-affective disorder, which is a chronic condition with symptoms such as hallucinations or delusions, mania and depression. It’s common for diagnoses to change, as these illnesses evolve over the course of many years, making it difficult to effectively diagnose and treat them.
In 2011, the Carpenter’s life in the After yet again took a turn when their son telephoned, talking about having died, his rebirth as God, and more. He was rushed to the hospital, this time for a lengthy inpatient stay, change of medication and a new diagnosis.
Eventually, his condition worsened over time, but there were no beds available and the family was forced to wait, caring for Patrick at home as best they could while also working full-time jobs. By now, their son was over the age of 18, and HIPAA privacy laws prevented Leslie and Scott from even talking with his doctors without a release, which their son withheld in an effort to coerce modifications of his inpatient care or to be taken on passes to leave the hospital for short durations.
They encountered more challenges. Doctors rotated on a monthly basis in psychiatric units, and so did his care. New medications were prescribed, one of which caused debilitating side effects like vomiting, choking, loss of appetite, incontinence, night terrors, light-headedness, tremors, and involuntary jerky movements. He was shuffled through multiple community service programs where services varied from agency to agency. And, when Patrick would become acutely ill and in crisis, Leslie and Scott would once again anxiously wait for a bed to open so Patrick could be admitted for intensive care.
The Carpenters are painfully aware that mentally ill patients in acute crisis are most likely to harm themselves or their closest caregivers — their family members. At times, they feel like they might be perceived as overbearing or too involved in the eyes of medical professionals, but with stakes this high, they have no choice but to be squeaky wheels. They’re fighting for their son’s life.
Leslie and Scott Carpenter describe specific challenges they ran into when seeking proper care for their son, Patrick.
After 10 years of dealing with the Iowa mental health system, Leslie and Scott have a long wish list of improvements. Re-open all of the beds at the two remaining mental health institutes and fully staff them. Open more psychiatric beds in regional medical centers in rural areas that are more than a one-hour drive to an urban center. Take medical decisions about mental health treatment out of the hands of insurance companies. Increase state efforts to recruit more psychiatrists, social workers, nurses and basic care providers to help better staff mental health agencies. And this is just the top of their list.
Their son lives with the conflicts of his own illness: He desperately wants to be like everyone else and live independently, to have a job and feel “normal.” He’s intelligent, a gifted artist and dreams of a vocation using his artistic talents. He sees others his age, like his younger sister, moving on — graduating from college, getting married and having children — and is aware that he’s stuck because of his illness.
For now, their son is living in a residential facility and doing relatively well, but still not able to live on his own. As for Leslie and Scott, they continue to do what they’ve always done, which is live in the After the best they can, and repeat their battle cry to the elected officials who will listen:
We can do better! We must do better!
Kristin and Sammie: Falling through the gaps
Davenport mom Kristin Ertzinger measures her daughter’s time not by good days, but by good moments. Sammie, who is 18, has been in and out of mental health treatment facilities since she was 14 years old.
Sammie, who came out as transgender one year ago, has struggled with crippling anxiety and depression for much of her life. When her child was in late middle school, Kristin first discovered Sammie was engaging in self-harm by cutting, and had crippling anxiety, depression and suicidal thoughts. In 2013, Sammie was admitted for an acute psychiatric hospitalization for strong suicidal ideations, the first of nearly 20 over the next three years.
Kristin quickly learned that with each hospitalization, Sammie saw a different psychiatrist who had different ideas as to her diagnosis and medications, and that the hospital psychiatrists didn’t work with Sammie’s regular psychiatrist. So, in one stay any number of medications could be added or taken away, but the stays were never long enough to monitor how Sammie would react to the changes. Sammie would then be quickly discharged to follow up with her regular psychiatrist, an appointment that could be several weeks away. All of which creates a tremendous disconnect between the professionals treating her.
Kristin has already faced her biggest fear for her daughter: In February 2017, Sammie nearly succeeded in taking her own life when she crashed her car into a median pillar on Interstate Highway 80 at 75 mph, her most serious attempt to date. The crash resulted in fractured femurs at the hips, a fractured arm, foot, jaw, and skull, a grade 4 liver laceration with internal bleeding, and lacerations in both kidneys and her spleen. She spent 28 days in the hospital, and eight days in acute in-patient rehab. By divine intervention, Kristin believes, Sammie survived.
But the irony of Sammie’s 28-day treatment for physical injuries was not lost on Kristin. As a medical patient, Sammie was treated swiftly, no waiting for a bed, and with great care and excellent standards. That’s a stark contrast to the treatment Kristin has witnessed whenever Sammie passes through the emergency room as a mental health patient, where Kristin has seen Sammie treated with impatience, annoyance and indifference, waiting weeks or months, for any treatment at all.
The biggest difficulty now is that Sammie is so ill, she falls into a gap where there are limited options to provide her with the level of care that she needs. Despite the tireless efforts of her dedicated case coordinator, Sammie continues to be denied admission because there are no beds available, or Sammie’s “too high-risk” to be in lower-level facilities. At this moment, she’s on a waiting list for a bed at Eyerly Ball in Des Moines. But when will a bed open up? Who knows.
As a mother, Kristin wishes the world could see the person behind Sammie’s mental illness. The person who has an aptitude for science, math and complex puzzles, who has a natural music ability and plays piano and guitar. And like most 18-year-olds, Sammie has dreams. She wants to finish her last semester of high school and earn her diploma. She wants to learn a trade, find a job and enroll in college. But right now, she’s too sick to chase these dreams, the same as if she were fighting cancer or any other devastating physical illness.
Some days, Kristin is overwhelmed by it all, asking, “What if I had done this? What if I had done that?” She wrestles with guilt, anger, remorse and sadness. She worries about the effects the situation has on her younger daughter, who is only 7, and on her relationship with her partner. And, she worries about money.
Time off from her job as graphic designer at the Quad-City Times for those emergency hospitalizations, weekly visits to residential treatment for family therapies, countless medical appointments, and days when she just needs to be home with Sammie when it’s not safe for her to be alone takes a financial toll.
Despite everything, Kristin is still proud to be Sammie’s mom. She counts her daughter as one of the bravest people she knows. And she tells herself that as long as Sammie’s still alive, in this moment, there’s still hope.
Teresa and her son: ‘Iowa just has no plan for this’
I met Teresa more than 10 years ago through a mutual friend, and if I had one word to describe her, it would be tireless. She’s a single Urbandale mother of six — two young adult biological children, and four children under the age of 8 adopted from the Iowa foster care system. Teresa’s home is a busy place: lots of chatter, toys, school work and laundry.
Of her four adopted children, one is already showing signs of serious mental illness at age 8. (For safety reasons involving the child’s birth parents, I’m not using his name or Teresa’s last name.) He came to live with Teresa as a foster child when he was 5 years old.
From the beginning, he displayed behavior problems in response to the well-documented physical, sexual and emotional abuse and neglect he suffered in his birth parents’ custody. But like most adoptive parents, Teresa welcomed him into her family hopeful that he’d improve with a safe and loving environment. A typical kid in many ways, he loves riding his bike, playing any kind of sport and building with Lego blocks. He is a smart, bright boy.
But not long after the boy settled into his new home and enrolled in kindergarten, his behavior problems increased. There were verbal and physical outbursts, attempts to run away, and hiding from teachers at school. It took nearly a year to get him his first mental health provider through the Iowa DHS system. Right away, he was diagnosed with attention deficit hyperactivity disorder and post-traumatic stress disorder.
When the boy was 6, Teresa and her then-husband officially adopted him and gave him a forever family. But within two weeks, he started sneaking out of the house at night and hiding from his parents. He was caught pouring cleaning fluids on his siblings and the family dog. He urinated on furniture and smeared his own feces on the walls.
Over the course of two years, he went through five therapists after one moved out of state, two went on maternity leave and never returned to work, and two more were unable to find a diagnosis or clear treatment plan. They switched his medications and added to the list of acronyms: ODD (oppositional defiance disorder) and finally, RAD (radical attachment disorder). While shuttling the boy to dozens of doctor’s appointments, sometimes 20 appointments a week between all of her children, Teresa was forced to put alarms on every door in the house and sometimes stays up all night to monitor him.
Last month during an episode, the boy attempted to burn the family house down by short-circuiting a fan, saying to Teresa, his case worker and his doctor that he wanted to kill his family. He was immediately admitted to Mercy Behavioral Health, only to be released five days later on the advice, “If he tries to burn the house down again, give us a call.”
This started spinning a revolving door so many families can’t get out of: hospital admissions, early release, admitted somewhere else, early release again, and round they go. Upon yet another early discharge, Teresa desperately asked her caseworker how to keep herself and other children safe while the child was in crisis. Her caseworker’s response: “Iowa just has no plan for this.”
Today, after waiting nearly a month for a bed, the 8-year-old is in the Psychiatric Medical Institute for Children in Glenwood getting the intensive treatment he needs in a safe, controlled environment.
But Teresa doesn’t know for how long. Until the insurance runs out, she supposes. And once that happens, she has no idea what she’ll do next. She’s still trying to learn the intricacies of the Iowa mental health system.
Teresa’s biggest fear is that her son will never get the consistent, long-term help he needs to stabilize, and will never know what it’s like to just be a kid with no worries. She wishes that people understood mental illness is like a bullet wound. It’s just as serious and can cause just as much damage to a human body and spirit.
But if she has one hope for her son, it’s that he’ll one day get well enough to find some peace and be a productive member of society. And that he’ll know his tireless mom never gave up on him.
Kali VanBaale is the author of the novels “The Good Divide” and “The Space Between” and is the recipient of an American Book Award. She teaches creative writing for Lindenwood University and lives outside Bondurant with her family. Contact: www.kalivanbaale.com or @kalivanbaale on Twitter.