How Neglect of Care Costs

My Name is Bobbi McCarthy: This is Our Family Story of How Neglect of Care Costs
Mental illness profoundly affects not only the individuals diagnosed but also their families and communities. This blog post shares our family's narrative about the devastating effects of severe mental illness, particularly focusing on our experience with a loved one suffering from schizoaffective disorder and anosognosia.

The Initial Crisis
Our story began when our son, at the age of thirty-three, experienced a severe break from reality that led to a rapid decline in his life. Our highly intelligent, self-sufficient, charming, funny son, who worked and cared for his small twin boys, was suddenly gone. He lost his job, his relationship, his children, his community support, his home, his car, and ultimately, his dignity. For almost two years, his brain was on fire with psychosis because we could not get him help! As parents, we felt utterly helpless; he was an adult refusing any form of intervention. We tried to reach out for help, but the systems in place failed him—and us—repeatedly.

The Struggle for Help
In the first six months, we called 911 on him twenty-six times due to escalating threats and erratic behavior. Our community also called 911 multiple times during that first year. He faced five restraining orders issued by family and community members and three no-trespass orders issued by local businesses. Despite our safety concerns, the system repeatedly failed to provide the necessary support. Whenever we got him to the ER, he was never homicidal or suicidal, so no one would admit him. He refused voluntary admission.

He was jailed four times for driving offenses and for erratic, scary behavior in the community. After losing his housing due to threats to landlords, he lived in hotels for eight months during COVID, which we paid for to keep him from being homeless. He never believed he was sick; he thought I was behind his being arrested and committed because I was a nurse controlling the minds of all the hospital staff and the police force.

During this time, we witnessed his decline firsthand. He lost forty pounds in six months, cutting his food intake down to rice and beans, convinced that anything I bought him was poisoned. He began to refuse any homemade food, and his features changed; he became unkempt, wearing scarves around his head and tying them to his belt loops to keep himself safe. He would call us nonstop, raging about conspiracies, talking in word salad, and quoting the Bible to prove points that only he could understand. It wore down our health quickly.

We called for police check-ins almost weekly during that first year when he would threaten someone or local churches. They would arrive and find him paranoid but not homicidal, so no action of help would occur. We called Adult Protective Services so many times that we eventually gave up; they were of no help. It was discouraging, and we began to feel hopeless, except for the faith that sustained us.


The Living Conditions
Whenever he was hospitalized or in jail, I would go to his house to clean. I would literally sit in a chair and just cry as I took it all in. He lived in filth, with bare walls and strange writings covering them—warnings he felt he needed to leave for people he believed were stalking him. There were large kitchen knives stuck into the half-wall, rotting food, and dirty dishes piled up. His bathroom would take days to clean, and even then, it was not truly clean. I took photos of it and sent them to the police, to APS, and to the doctors caring for him in the hospital. Nothing changed.
​
He would get out and not follow through with any discharge plan. By now, we knew he had schizoaffective disorder with anosognosia, meaning there was no way he would understand his need for care. He truly believed that the governor of Maine was imprisoning him because he held all her dirty secrets. All treatments failed. He would not go to the outpatient treatment programs set up for him because he was convinced they were spying on him and wanted to keep him in jail forever.

The Turning Point
It wasn't until he faced legal consequences for his actions that the system began to intervene effectively. The only thing that could control his behavior at all was the threat of jail. After two terrorizing charges and a charge of trespassing from the local FBI office building, he entered the Assisted Outpatient Treatment (AOT) system. Finally, with a lawyer and a judge overseeing his case, he received the treatment he desperately needed. Because he was found to be incompetent to stand trial, he was sent to the state psychiatric hospital (Riverview) for treatment. It took him five months to be found competent to stand trial. He was released to the community and his home under the care of the Assertive Community Treatment (ACT) team as a condition of his release/probation. This was a probationary period to see if he could remain a safe community member.

The Role of AOT and ACT
Through the AOT program, he was connected with a local ACT team that provided comprehensive support. This included being seen by a psychiatric nurse practitioner for medications and being assigned a case manager for medication management and home management. He was also assigned a counselor and a peer men's group. He attended the ACT team building for appointments twice a week and was visited at home once a week.
For the first three months, I had to drive him, which caused me fear and took a lot of time, but slowly the treatment plan began to work. I saw him calmer, more articulate, and less angry. He could hold longer, regular conversations and began asking about family, genuinely happy to receive news. Some of his beautiful humor began to return.

His case manager arranged rides for him with the KVCAP bus, allowing me to regain some hours to work. It has been six months now of the two-year court-ordered treatment via probation for the terrorizing charges, and he is doing the best he has in going on the sixth year now. He is still very sick, but he is functioning at a higher level. He is ordering groceries and managing his SSDI check without needing money from us anymore. He cleans his house regularly and walks to town for exercise and fresh air when feeling “smothered by voices.” He can call us when he has a need, and now allows us into the house to help him with those needs. He is making all his appointments, and if he is sick or cannot attend, he knows who to call. He can text for short periods with lucid thoughts. It is working, and we are the calmest we have been in six years.

The Financial and Emotional Toll
The financial burden of supporting our son during his illness was staggering. He lost housing, a car, family connections, and jobs in a mere six months. We spent roughly $20,000 on hotels to prevent him from being homeless. We bought him a home for $130,000, and until his SSDI kicked in at the end of year two, we paid all his expenses for food, laundry, and needs, totaling around $5,000. We continued to cover his heating needs, tax bills, and house maintenance, amounting to roughly $6,500 a year for four years, totaling about $26,000. The state paid for a public defender for him for three years, and he was housed at the Riverview Psychiatric Hospital for five months. He spent about four weeks in jail across three stints. We made thirty-six 911 calls, excluding calls from the community and businesses.

The emotional toll was equally heavy. I ended up in the ER three times with cardiac workups for chest pain and had to take a year of FMLA due to the high stress that caused my blood pressure to skyrocket. I was diagnosed with broken heart syndrome after year one, which is actual heart damage.

The Path to Recovery
Today, after six months into his two years of court-ordered treatment, our son is functioning at a higher level under the ACT team's care. He can manage his SSDI benefits, maintain some semblance of a home, and even reach out to us for help when needed. While he remains unwell, the progress he has made is a testament to the importance of structured support and intervention.

The Importance of Comprehensive Care
This journey has highlighted the critical need for understanding severe mental illness and the complexity of anosognosia that complicates an individual's understanding that they are sick and need help. Adults with severe mental illness and anosognosia cannot seek help because they do not realize they are unwell. They will not be able to follow through with discharge plans if hospitalized due to their condition, and they absolutely need treatment forced upon them because otherwise, they will not receive any.

Unfortunately, the current model of care is disastrous; it does not act on treatment until the person becomes unsafe to the community or, God forbid, kills someone. There is no system in place like that until the person enters the criminal justice system. Severe mental illness is complex, and addressing it requires compassion, understanding, and a commitment to providing the necessary resources for both individuals and their families.

Conclusion
Our experience underscores the importance of advocating for mental health resources and understanding the profound effects of neglecting care. It is a journey filled with challenges, but with the right support, recovery is possible. We hope that sharing our story can inspire others facing similar struggles and encourage a more compassionate approach to mental health care.

By prioritizing understanding and support, we can foster a system that empowers individuals to reclaim their lives and rebuild their relationships with their families.

---

The financial toll of not providing timely treatment for Bobbi’s son was staggering. Over the course of his untreated psychosis, the family spent roughly $20,000 on hotels to prevent homelessness, $130,000 to purchase a home, and an additional $26,000 covering food, utilities, taxes, and home maintenance. The state spent funds on a public defender and approximately $120,000–$150,000 for a five-month stay at Riverview Psychiatric Hospital to restore him to competency. He also spent roughly four weeks in jail across three stints, at an estimated cost of $4,000–$6,000. 

These figures do not capture the immeasurable emotional costs—the stress, fear, and heartbreak experienced by the family. This story illustrates the high price of neglect, and underscores the critical importance of timely, evidence-based intervention: when proper care is provided, individuals with severe mental illness can stabilize, engage in treatment, and rebuild their lives, saving both lives and taxpayer dollars.