Missouri’s mental health care system is inhumane and dysfunctional

I would like to know who the good Samaritans were who saved my sister from freezing to death as she was screaming at ghosts from the side of the road at two different intersections in St. Louis since December 2023. I would like to thank them for their actions.

At 6:51am on February 22nd, I received the phone call I had been waiting for for months. The medical technician on the other end said that he was sorry to wake me and that it was so early in the call, but my sister had died last night. She was 61 years old. The technician said he couldn’t tell me the cause of death and that the office staff wouldn’t arrive until 8am. My sister was temporarily residing in a residential care facility in St. Louis, and my brother, another sister, and I were hoping that she would get back on her psychiatric medication and return to life as it had been until last summer.

Of the four Bollinger children, she was by far the most sarcastic and stubborn. Almost seven years apart in age, she and I were best friends through our pre-teen, teenage years, and well into our twenties. She was the one who first dropped a snowball on my back while sledding when I was 13. She would always walk past my bedroom door, slam the light switch, and then say, “Oh, sorry! I didn’t know anyone was there!” She was always borrowing my sweaters and other items, frequently returning non-clothing items broken.

Her favorite moment occurred one summer Saturday in my mid-teens, shortly after I’d woken up and sat on the living room couch. She yawned while sweeping away the cobwebs. As the yawn reached its climax, I suddenly tasted paper. She crumpled up a notebook paper and shoved it into my mouth with perfect basketball skill. Boom! I later exacted revenge by hurling the butter knife into the kitchen sink, but not before it had penetrated her long brown hair and left behind a crunchy glob of peanut butter.

Being single and childless, I was her only regular contact after my parents died in early 2019. We spoke on the phone on weekends. The days were dictated by our work schedules, hers more so than mine. Unfortunately, most of those calls ended with many meaningful silences while we were each watching TV. Last Saturday, August 26th, she called twice at 7am but did not leave a message. A couple of weeks before August 26th, she had to hang up the phone. I found that odd, but it wasn’t until much later that I realized how it fit into the puzzle.

That day, after I woke up and noticed she had called without leaving a message (her usual pattern of behavior), I randomly texted and called her throughout the day, with no response. By late afternoon, I was feeling very anxious. She called again at 7pm, asking if now was the right time.

She told me that she had a bout of diarrhea last summer and her solution was to take large doses of Imodium AD. Things started to spiral out of control from there, but in typical Susan fashion, her pride took precedence and she didn’t tell anyone about her condition until it was no longer under control. She often acted impulsively, without planning or strategizing, she just acted.

When I picked her up from her apartment the next day (she had said it was too late the night before to go to the hospital), her symptoms were spot on: she had no balance or dexterity, and she had slurred speech (my sister wasn’t an alcoholic, but she did not do well with psychiatric drugs).

I knew she couldn’t drive herself, so I took her to a nearby emergency room, where they initially thought she had had a stroke and called an ambulance to transport her to the former St. Anthony’s Hospital (now called Mercy South) in south St. Louis County.

After an 18-hour hospitalization process, the surgeon told me she’d died from a combination of Ambien, a psychiatric drug, and high sodium. I still can’t believe it.

Within 48 hours of her admission, her brain began having seizures that continued sporadically until around Labor Day (November 1, 1999). That week, the head surgeon asked me for permission to put her in a medically induced coma for about 10 days. Being geographically closest, I quickly became the go-to person for making these decisions.

I believe the cumulative effect of all these seizures outweighed the positive effects of her psychiatric medication. 2023 turned into 2024 and things continued to get worse.

She lied about taking her medication regularly, believed she was working (her company put her on administrative leave at the end of August last year), and became increasingly manic.

Susan was first diagnosed with bipolar disorder in late 1981, when she was 19. I had just turned 12 and had no idea what a diagnosis meant. Besides, I was in the sixth grade and busy battling the nightmares that essentially accompany middle school: showers after gym class, lockers, puberty.

I later heard from my mother-in-law that mushroom drugs were also involved, but I couldn’t corroborate that. But it seemed logical, since Susan had chosen to attend school at least 1,000 miles from home. It made sense that she would want to “break free” once she left the nest.

Our brother, who lived closest to her, was sent to find out what had happened. Sadly, it’s easier to pluck pearls from oysters than to get him to tell the story. I still don’t know what he found when he arrived in Albany, New York.

Susan dropped out of Rensselaer Polytechnic Institute (RPI) after one semester, and I vividly remember her bragging that a college recruiter told her that RPI only accepted students from two public school districts outside St. Louis, one of which was ours.

She enlisted and served in the United States Air Force from 1986 to 1988. She was honorably discharged after severely injuring her leg while walking in London, England. She then moved to Chicago and found work at Motorola. By the mid-1990s she was working for AT&T in Denver and lived in Phoenix until 2003. That year, her mother flew alone to Phoenix to pick up Sue after she had a particularly bad manic episode and brought her home, where Sue remained. As Susan grew older, her diagnosis changed to bipolar disorder with manic depression, personality disorder, and other subsets. She spent a lot of time in various mental health facilities in multiple states throughout her twenties, thirties, and forties.

The August hospitalization turned into a visit to a St. Louis nursing home (not the one where she died) just before Halloween, during which she remained there for two months without any psychiatric medication.

She returned to her apartment, and by November, I felt well enough to begin scheduling medical appointments to address other neglected health issues. The problem was that I couldn’t drive her to all these places whenever she wanted. I think she began to believe that I was her personal chauffeur, even though we live over an hour away. We had hoped to transition her to a group like Visiting Angels, which helped my aging father and his mother, but Susan had never been able to calm her behavior enough to make that possible.

Right after Thanksgiving, my brother-in-law offered to take Susan to two appointments while he was in town for work. Unfortunately, Susan got in her car (which she shouldn’t have been driving) and left right before he arrived. It turned into a two-day road trip, driving all over St. Louis County until she ran out of gas in front of the middle school. I don’t think she slept once in those 48 hours. I didn’t ask any questions. It was a struggle just to get Susan’s car back to her apartment.

It’s been three months since she passed away, and my biggest issue is dealing with the mental and physical health care systems in St. Louis City and St. Louis County. I now kick myself for not double-checking to see if her medical file included psychiatric medications. I simply assumed it did because she had previously attended the VA and the aforementioned mental health facility. A minor red flag is that the hospital and other medical personnel had little idea she was a veteran, which should also be in the file.

I can’t tell you how many times I had to tell each nurse that she was a veteran so that she could receive benefits if applicable, and I can’t remember how many times I told her that she had been at the same facility earlier that year or the year before.

One time my sister had to have a GI tube inserted. It was due for removal in 6 weeks, around Halloween. Then the surgeon who inserted it, both in private practice and at the hospital, refused to remove the tube. She had to go back to the same hospital where it all began just to have the tube removed. It didn’t take long, but it was a pain.

I don’t understand why blanket federal regulations prohibiting the coercion of patients to self-medicate can’t be argued in cases like my sister’s. Mental health crisis center staff repeatedly told me they couldn’t do well-child checks or surprise home visits unless my sister said she would harm herself or others, which she never said, at least to me. In Sue’s case, having someone force her to take psychiatric medication was exactly what she needed, given that she lied to us about being on psychiatric medication.

But eventually her seizures negated all the positive effects the psychiatric drugs had on her brain. She locked her two cell phones because she couldn’t see the screens well enough to read, and she frequently lost her reading glasses. By the end of the year, she was barely making sense and wasn’t listening to us. Her text messages became more erratic and incoherent. She was highly susceptible to advertisements, any kind of advertisement, no matter how widespread. She believed they were all directed at her and she had to respond to them or take advantage of them. There were all kinds of text conversations and emails on her cell phone, starting with responding to random text messages and email advertisements.

Our parents lived into their late 70s, three of my grandparents lived into their early 70s, and my paternal grandmother lived to nearly 98. Many years ago, I predicted that Susan would not live past 65, let alone 70. I have never wished I was so wrong in my life.

I still remember my mother’s greatest lament about Susan’s situation: “Chuck, that’s such a shame. She’s so smart. And so are all of you.”