What happens when a loved one has SMI

Want to tell your story to the media?

According to the Treatment Advocacy Center, Spectrum News is looking for family members to interview about why they support SB 43 (the grave disability bill) and SB 363 (the bill creating a database for treatment beds)Spectrum is working on a character-driven story and would like to speak to people in “the Sacramento or the Bay Area who are in support of pieces of legislation, who have a personal connection for the need to update the behavioral health care laws.” They did a similar piece about CARE Court legislation.  If you are interested in an interview, please email TAC at Share your name, city and zip code, best phone and email and a brief description of your connection to SMI.

Lee Davis, who has bipolar disorder, serves on the Criminal Justice Committee of the Alameda County Mental Health Advisory Board. She was involuntarily committed into a psychiatric facility and credits the treatment with saving her life.  She and her mother made this video to tell her story and to explain her recognition that involuntary inpatient treatment is often necessary, which means that there must be policies in place allowing families to access such treatment as well as enough facilities to provide it. Lee is an active advocate for the needs of all persons with SMI.

Recently, Lee described to the Sacramento Bee how “forced” mental health care saved her life. See the article .

Madelyn Delaney, who had suffered from SMI from the time she was 13, was killed at age 38, while she was sleeping on the roadside and was run over by a hit-and-run truck driver in Modesto. She was the daughter of Jennifer Williams, FASMI member who is founding a new FASMI group in Stanislaus Co. Jennifer and her husband, Edward, are continuing to raise Madelyn’s daughter, Angelica Joy. Their story was covered on TV via ABC 10 News and in an LA Times article.

Treatment Advocacy Center [TAC]- a national resource for SMI advocacy – works to address gaps in the research we rely on to move treatment and policy for severe mental illness forward. One big gap: How SMI affects women. There just hasn’t been substantial research devoted specifically to how women experience and live with SMI and how we can shape treatment to better meet their needs. Together with my colleagues, we set out to right this wrong. The result is the first-ever SMI research report of, by and for women.

Mike's beautiful mom, Elizabeth

Most of the stories we hear from families are about their young adult children suffering from SMI.  Mike Gaeta‘s immigrant mother suffered from schizoaffective disorder in her old age. He faced many of the same frustrations with the system, and some unique ones.  It was very difficult for him to care for her, to watch her live in her car and resist treatment.  Mike made a moving film and website devoted to her.  His website –– is subtitled “my mom and her untreated serious mental illness.” Watch his excellent 2020 documentary film entitled Benevolent Neglect: A story about our failing mental healthcare system.

Alison Monroe‘s story appears in a 2019 article published by the National Shattering Silence Coalition. Here is an excerpt:

D is … a schizophrenic meth user. For years the system … regarded D’s problem as motivational, and it still wants to see it that way. The hospitals she stayed at tended to define her problem as drug abuse with some adolescent rebellion mixed in. If they could start her on medication for her brain, and impress on her how important it was to stay off drugs, she would be “in recovery” and thus able to live independently and maybe even get a job, and ready to be discharged from any hospital she was in. I followed her for five years, while she was discharged dozens of times — although as I describe below, the system didn’t make it easy for me to do that — and during that time I began to understand how profoundly wrong the system’s perception was. * * *

Once during this five-year odyssey, D was released from an emergency psychiatric hospital—she had been in and out of them (5150’d, as we call it in California) some 15 or 20 times—and we were walking around in the City. We went into Whole Foods (a high-end grocery store) so we could use the clean, spacious bathroom there (bathrooms in the Tenderloin are pretty scarce). Reminded by a display of dollar sodas, she told me an anecdote about voices. / The last time she was in that Whole Foods, she was thirsty and saw a similar pyramid of sodas. She remembered she had no money. But a voice told her, “It’s all right, I’ve got it, it’s paid for.” So, gratefully, she took a can from the pyramid, opened it, and took a sip. Quickly a security guard grabbed her, twisted her arm up behind her back, dragged her into a back room, threatened to call the cops, and told her never to come into the store again. Whoever had told her the soda was paid for was nowhere to be found.

Thus I began to understand that a mentally ill person cannot be blamed for what their voices tell them to do. Telling people them to take responsibility for their actions is no substitute for treating them or for keeping them safe. ….

During two horrible summers [when] she was homeless (between short stays in emergency facilities) and slept in other people’s tents or boats in several counties. She understood she had a government job where they paid her millions of dollars in secret bank accounts as long as she took meth every day. She had a case manager in our county—I was told she had “the highest level of care”—but to do anything for her they would have to find her, and as she had lost or sold her phone that did not happen. / Sometimes she would show up at my house to sleep, terribly thin and sunburned, talking about things I didn’t understand and listening to people I couldn’t see. She would sleep, but often she would bounce up again after a couple hours and say she had to go see or do something, and not come back for weeks. One time she stayed a couple days, and I was able to get her case worker to come over. He listened to her while she was lying in bed crying. D told him something that was hard for me to hear and hard to take in. She said that she had to take meth every day, at least a little bit, or her unborn baby would die. ….

Anita Wills has a son with serious mental illness.  She was interviewed by John Ramos of KPIX news last September. She told her family’s story as she spoke in support of the CARE Court legislation. 

We encourage people to share their stories.  They are the best testimony to what our families endure and what needs to be fixed in our system.