Tag: schizoaffective disorder

Mom Is Gone Now and Politicians Are Still Unhelpful

mikegaeta

I’m doing what advocacy I can still, though it is very slow moving. Most recently, I contacted a couple of California State Representatives to let them know I’m available to provide testimony for legislation related to treating people with severe mental illness (SMI). Improving access to treatment and care for people with SMI is getting more attention these days, due to the homeless crisis here in CA. However, as was the case when my mom was alive and we’d try to get her help, politicians and their aides are showing little interest in helping or listening to me. One of the aides of State Representative Buffy Wicks (District 15) actually asked me what my credentials were, when talking to them on the phone! As a political scientist, that perplexed me. As a citizen and tax payer, that disgusted me. Politicians need to be more responsive to their constituents, regardless of status.

I’m “playing the game” for now. But I’m not above harassing them to get a meeting. Below is a copy of a letter I recently sent to Representative Miguel Santiago (District 53), as an example.

Dear Representative Santiago,

I am writing to you because I would like to give testimony for bills and proposals related to the treatment of people with severe mental illness (SMI). I understand that there is currently a bill, AB 1340, that you are sponsoring that is scheduled to be discussed in January. The bill, as I understand it, would amend/modify “Grave Disability” criteria that is a part of the 5150/LPS process. I am highly interested in providing testimony for that proposal, given that I have unique experience and invaluable knowledge in dealing with the 5150/LPS process.

A photo from 2009 of mom and I before we appeared in probate court. I was her conservator for a short time.

Professionally, I am a community college teacher and a Political Scientist. I have been teaching full-time at City College of San Francisco since 2005. I am, also, an advocate for people with SMI and a former caregiver of a family member with a SMI. My mother, a second generation Mexican-American, began exhibiting signs of a serious mental illness around 2002. I started to play a direct role in trying to get her help and treatment in 2007. By then, as a result of no treatment, she was having hallucinations and not taking care of her medical/physical needs, particularly her diabetes. Despite my family’s best efforts, my mother would spend the last 1/3rd of her life with an untreated SMI. In my experience with the mental healthcare system, as my mom’s advocate and caregiver, I largely blame the 5150/LPS process for her needless suffering and premature death.

I found out relatively quickly how difficult it was to get help for my mother, when I began advocating for her in 2007. Though my mother would be 5150ed various times, between 2007-2009, I was told by representatives in both San Francisco County’s and Fresno County’s Behavioral Health Department that it would be easier for them to take her in and treat her if she were homeless! “Really?!”, I thought. “How unconscionable!” I had to get both counties involved, since I was living in San Francisco and my mom was primarily in Fresno, at the time.

Starting in 2010, the unimaginable would happen. My mom would end up homeless, living in a car, due to multiple evictions from apartments. At times, when we could, my sister and I would try to have her 5150ed, out of desperation. She’d show up at our houses exhausted and sick from lack of sleep and rest, and failing to treat her diabetes. The police would show up and, each time, refuse to 5150 her. Though homeless and obviously ill, they would judge her to not be “gravely disabled.”  They would essentially tell us, “She has to be lying naked in urine and feces on a railroad track” for her to meet “gravely disabled” criteria. In these experiences and more, what became clear to me is that her living in a car was considered “adequate shelter.” My mom barely having any clothes to wear, even in Winter, was still viewed as “adequate clothing.” Though she was diabetic, eating primarily high fat and high carb food was viewed as her being able to “adequately feed herself.” My mom having an official diagnosis of schizoaffective disorder did not matter to them. Each time, they would conclude she was “competent” and able to make decisions for herself.

To me and my family, this was an outright neglect of duty by these police officers. Eventually, in 2018, she would develop stage 4 kidney failure. A Modesto police officer took this institutionalized neglect and, really, cruelty, to a new level when he refused to 5150 my mother in January of 2018, when she stopped taking her medications for various serious physical conditions. My mom was in the midst of an acute psychotic episode and stopped taking her medications because “God told her they were poison.” Going on day four, she was unable to eat or drink anything. She did not have an appetite and would puke up anything she tried to drink. She was demonstrating organ failure. Despite this, the police officer determined she did not meet 5150 criteria. My arguments to the contrary and pleas for help fell on deaf ears. The police officer, like many before him, ruled my mom was “competent” and able to decide for herself if she wanted to go to the hospital. My mom could have died at the house. The police were willing to let her die. Fortunately, however, from the urging of other family members, my mom would agree to go to a hospital later in the day and be medically/physically stabilized.

All of this is to say nothing of other times the 5150 process and various authority figures and officials failed my mother. I detail this some in a documentary film I made in 2020 titled “Benevolent Neglect.” It is available for viewing on YouTube. (A film trailer is available for viewing here: https://youtu.be/ta08Lo3ULqo ) With this letter, I have focused on the problems my family has faced with how “Grave Disability” is interpreted and applied. It is too NARROW. Dr. Julea McGhee, who is the emergency room psychiatrist in my film, told me this.  She said the problem is insurance companies determine what constitutes “Grave Disability” and that they intentionally define it narrowly. In her opinion, many more people should fit the criteria for “Grave Disability” than actually do. I understand that AB 1340 would amend “Grave Disability” to include “medical self-neglect.” I strongly support including “medical self-neglect,” as my mother’s frequent hospitalizations and deteriorating health were undoubtedly the result of her severe mental illness. As I think I demonstrated, I can speak on this with considerable knowledge and authority. I have much more I could say and contribute in this discussion and debate. Thank you.

National Best Seller Reviews My Film

National Best Seller Reviews My Film

mikegaeta

I was lucky enough to have my film, Benevolent Neglect, reviewed by national best selling author and mental health advocate, Pete Earley. Pete knew my family’s story somewhat, from when my mom was living with me in Modesto. As a way to raise awareness about our plight and to possibly have people at the ready to help me shame local government to help my mom, I had asked Pete to run a couple of my blog posts on his blog. He obliged.

I was hoping Pete would like my film. I wasn’t expecting him to give it such a glowing review, though. I’m so happy he did. Mom would be proud of me, for sure. Here are some excerpts:

“A Modesto police officer refuses to involuntary commit Josie so she can go to the hospital even though she is clearly a danger to herself. Why? Because she is able to tell him what day and month it is, along with the name of her street. A  hospital supervisor ignores Estrada’s pleas even though his mother has nearly died because voices are telling her not to take her diabetes medication. Why? Because Josie wants to be discharged and the supervisor doesn’t want responsibility for her.  A California Department of Mental Health employee rebuffs Estrada when he says his mom has been kicked out of so many apartments, she now is homeless. Why? Because she is living in her car and therefore has a roof over her head.”

“All of us rejoice when we read accounts about individuals, such as my son Kevin, who get treatment and the tools needed to control the symptoms of their illnesses and do well in life. I believe most Americans with mental illnesses can but Estrada’s film reminds us that getting that help often proves impossible.”

You can reach the whole post here: http://www.peteearley.com/2020/09/28/14812/

First Cut of My Film Is Done!

First Cut of My Film Is Done!

mikegaeta

Hi all,

It took me longer than I wanted, but the first cut of my film, Benevolent Neglect, is completed. I’m circulating it to a small group of people for feedback, but plan on being completely done by the end of August. I wanted to share the news and opening scene with my “followers” on here. You can view it below. Thanks for the support, especially to those of you who have been following my blog for some time now. It never got the attention I would have liked it to, but every visitor and follower mean a lot. I know the story has the potential to resonate with many more, so that’s why I decided to make a film. Feedback, so far, has been very positive.

I’m a Former Caretaker and The Joker Movie Is Pretty Right On About Society

I’m a Former Caretaker and The Joker Movie Is Pretty Right On About Society

mikegaeta

As a former caretaker, The Joker movie hit me in a raw way. I think the movie accurately portrays how society mistreats the poor and people with serious mental illness (SMI). I saw this, firsthand, in trying to help and take care of my mom, who struggled with schizoaffective disorder.

My mom wasn’t able to take care of herself adequately. She, in fact, had been suffering mightily and deteriorating for years. I couldn’t take it anymore. She deserved to live with a semblance of dignity.

When I started taking care of her full-time, we didn’t have a lot of family around and I didn’t have a lot of money saved up from my teaching job. So, my mom and I were pretty isolated socially and very reliant on the government for her healthcare and welfare needs.

I was able to stabilize her medically (physically) enough and keep her safe for two years, but society made it exceedingly difficult, in every respect, for me to do so. As it was, it never provided us with sufficient help and respect, since the onset of her SMI. My mom needlessly suffered for more than a decade. She would never be treated for her SMI and stabilized. She was discarded. We were discarded.

“They don’t care about people like you, Arthur.”

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Arthur Fleck doing his best to survive.

Those were the words spoken to Arthur Fleck by his government social worker (SW). She was referring to the policy makers (officials) who decided to close her office and, thus, cut Arthur off from his psychiatric meds. But as was clear in their interactions, even the SW didn’t seem to care all that much about Arthur’s struggle. As Arthur stated moments before she told him the news, “You never really listen to me.” He’s of course saying she doesn’t really care about him.

This was all too common an experience in trying to access MH services for my mom. For example, there was the time when an intake worker/clinician at a county Behavioral Health Department, in flagrant violation of county policy and state law, outright denied my mom MH services, because my mom, like many people with SMI, denied having a SMI!

The worker was cold and impersonal from the minute we met. I remember saying, angrily, on my way out of the interview/assessment, “I’m waiting outside, mama. All she’s doing at this point is filling out information so they can get their money for seeing you from Medi-Cal.”

There was the time when a hospital nurse and supervisor unsafely discharged my mom against my wishes. My mom was clearly in a psychotic state and unable to make a competent decision about her own care. My mom didn’t even believe she was in a hospital.

Despite this and her physical condition being fragile (She would be treated for sepsis and was just two days removed from a ventilator.), hospital staff would wheel her to a cab. They couldn’t even be bothered to do a psychiatric evaluation to see if she fit involuntary hold criteria.

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My mom didn’t like hospitals. I can’t blame her.

This incident was an extreme example, but our experiences with various hospitals taught me they don’t give a shit about people with SMI. Whenever my mom started to become non-compliant, due to her psychosis, staff would become less attentive and they’d begin preparing her for discharge, even if she wasn’t medically stable.

And this is what they were willing to do regularly in front of me. I can only imagine what they did all those times I wasn’t with her before she lived with me!

“Is it just me or is it getting crazier out there?”

That’s what Arthur asked his social worker during one of their sessions. She responded by saying, “It’s tough times. People are struggling with no work.”

Her comment is a reference to the larger political and economic situation the movie is based in. It’s a pretty subtle backdrop, but the movie itself starts with a radio report of a pitched labor battle, a garbage strike, to help make that very point.

It lasts weeks and leads to increasing piles of garbage on city and neighborhood streets. Tensions build and, eventually, protests breakout at what’s clearly deep frustration with economic inequality and uncertainty, and government mistreatment and negligence.

Arthur’s access to his meds and social worker getting cutoff epitomizes how poor people with disabilities are some of the biggest victims of these conditions. Social scientists actually have a name for such government practices. They’re called “austerity politics.”

In a basic sense, we have been living under an era of “austerity politics” for decades. Since the 70s, governments, at every level, have been cutting costs and services (i.e. downsizing), in the name of “fiscal responsibility” and in order to foster a better “business environment.” It’s a process, a project really, that started as a result of a sluggish economy, increased foreign competition and lower corporate profits. The movie is set in the early 80s, the decade when the process accelerates. (My mom would actually lose her job with the State of California in the late 90s, due to layoffs.)

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An abandoned psychiatric hospital

Mental health services have not gone untouched. People like to blame the Republicans and Ronald Reagan for the closing of state psychiatric hospitals. But today, even in “Liberal” San Francisco, we have a local government severely neglecting the needs of its own SMI population. So much so, we have local MH workers themselves speaking out against the inadequate conditions and publicly protesting. In fact, former Chief Psychiatrist of SF General Hospital, Robert Okin, describes the situation as a “war on the mentally ill.”

Arthur’s social worker’s full comment actually was “They don’t care about people like you, Arthur. They don’t care about people like me either.” I’ve had my issues with regular staff and frontline workers. In fact, a friend my mom and I made at her dialysis center even told me, in a private conversation, that her coworkers don’t care about the patients. They only care about the money.

This regime we are living under of austerity leaves me with no doubt, however, that high level administrators and public officials are the biggest culprits of all. They make it too difficult, if not impossible, for even the best and most empathetic workers to do their jobs.

“Society decides what’s fun-ny.” 

Arthur says this after embracing his homicidal, violent urges and becoming The Joker. It’s the beginning of a strident public criticism he makes, while appearing on a late-night talk show, to explain his rage and motives. His criticism really is the first time he says something so politically cohesive in the movie.

In a basic sense, he says society made the rules and the rules were made to keep him marginalized and an outcast. He worked hard and honestly, but he lost his job cause of a dishonest coworker and cold-hearted boss. He wanted to get better, but he was cut off from his meds. He cared for his ill mother the best he could, but in the end, she was his biggest betrayer and abuser.

My life experience hasn’t been so bleak. In fact, there were many people, workers, clinicians and strangers that were nice to me and my mom, and did try to help in some way. And my mama knew I loved her and I know she loved me, even though her SMI strained our relationship.

But I damn well know there are too many people who have it worse, like Arthur. And some of them, unfortunately, do lash out with violence. As it is, I’ll never forget what was done to me and my family. I don’t know if I’ll ever be able to forgive. Society will try to focus on individual motives or psychological reasons for behavior it doesn’t like, but the fact of the matter is society, is too often, the monster.

High Stress, Caretaking and Their Aftermath: PTSD Takes Root

High Stress, Caretaking and Their Aftermath: PTSD Takes Root

mikegaeta

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A selfie with mom, a few months before I moved her in with me.

My mom’s birthday just passed. She would have been a young 68 years old. Like last year, I went to the cemetery to take her flowers. Visiting her grave on special occasions is a kind of ritual for me now, and I don’t expect that to really ever change. It’s part of my healing, and my healing is going to be a long road, I’ve realized.

Sure, the grief is lessening, but other issues remain. Or I should say, have revealed themselves, like my Post Traumatic Stress Disorder (PTSD). Now, I knew I had anxiety. I’ve wrestled with that for some time. In fact, I mentioned that to my mom her last week with us, while she was in hospice, as a way to try and make some atonement for losing my temper with her at times. I apologized to her and said my anxiety can make me irritable.

Just weeks after my mom passed, though, I began to notice some persistent changes and problems with my mind and body. Things I hadn’t really noticed before. As I researched and learned through counseling, they were definite signs of PTSD. Before I explain my experience, here’s what the National Institute on Mental Health (NIMH) says about it:

“Post-traumatic stress disorder (PTSD) is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event… Nearly everyone will experience a range of reactions after trauma, yet most people recover from initial symptoms naturally. Those who continue to experience problems may be diagnosed with PTSD.”

It’s well-known that PTSD is something experienced by many combat vets. Experiencing the death of a loved one, however, is also traumatic and can lead to PTSD in survivors, especially when the suffering is prolonged.

Mental health advocates have a name for this. It’s called “traumatic loss.” Two researchers define it the following way:

“A death is considered traumatic if it occurs without warning; if it is untimely; if it involves violence; if there is damage to the loved one’s body; if it was caused by a perpetrator with the intent to harm; if the survivor regards the death as preventable; if the survivor believes that the loved one suffered; or if the survivor regards the death, or manner of death, as unfair and unjust.”

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Restraints my mama was put in at a hospital.

My experience with my mom meets most of these “check boxes.” Over the course of many years, I lost my mom twice, once to her mental illness, the second time physically. In her last two years, the time she lived with me, her kidney disease would gradually take over. I witnessed her lose her physical strength and increasingly pre-age. And the violence? I saw, firsthand, how my mom was the victim of institutional discrimination, abuse and neglect. My heart broke over and over again, in many ways, in this whole ten year plus ordeal.

The sadness and guilt were as intense as I figured they would be, after my mom passed. But as I got better at navigating the murky waters of grief, I started to notice those other changes and problems.

For one, I was restless and uneasy. I would pace between rooms in the house at times. I didn’t recall ever doing that before, aside from the week my mom was in hospice. I liked to relax whenever possible. What was this about, I wondered?! I began noticing, too, that something was going on with my mind. Thoughts were racing and intrusive, and I would be a bit forgetful. I wasn’t able to “zone out” by just watching TV anymore. I had to, also, navigate and skim things on my computer, when watching a TV show. Memories and moments of despair played like songs on repeat in my mind, like the time my mom told me, about a month before she passed, that she didn’t have the strength in her hands to cut zucchinis for Albondingas soup. That was the last time she helped me in the kitchen.

I started to realize that it was like I was stuck. Stuck in my role as caretaker for my mom. Stuck trying to fight my hardest to keep her alive. Stuck dealing with, and often pushing back against, her doctors and hospital administrators, monitoring and assessing her condition every day, counseling her to take all her medicines, and then keeping her as comfortable as possible in hospice.

Yea, I was stuck. My body and mind didn’t know how to turn itself off or even how to lower the volume. Part of them, I’m sure, didn’t want to. I just wanted my mom back. How dare the system take her away from me, from us, so unjustly and prematurely! To accept my mom passing was to accept that we ultimately lost the “battle,” so to speak.

The restlessness, intrusive thoughts and hypervigilance I just described are classic symptoms of PTSD. I, thankfully, don’t have nightmares. But my sleep isn’t great. More than a year after mom passed, I still wake up a few times during the night, as if she’s still here. She’d wake me up, for different reasons, or I’d wake up to go check on her. And rare is the morning that I am able to sleep in past 7:00. I used to get up at that time, like clockwork, to give my mom her morning medicine. I can still be tired, but my racing thoughts won’t let me go back to sleep easily.

And irritability? Check. Anger? Check. While I experience these emotions at times, for what appears to be no logical reason at all, unrelenting intrusive thoughts summon them easily enough. As for flashbacks? Sure. When I see a homeless person or when I’m at a doctor’s office for a medical checkup, my blood pressure and anxiety easily rise. I’m back there, again, in some fashion.

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A tribute to mom: A rose, representing mom, going to heaven.

All this said, I am in counseling and doing my best to take care of myself. I was 8 months into my grief counseling when I started to see another counselor for more formal treatment. He would diagnose me with PTSD. I’m also experiencing low-level depression, which makes the self-care part of my healing hard sometimes (I have little motivation to cook), but my counselors say I’m doing very well, all things considered. Still, I know I need to find a meaningful purpose. I need to find peace. I need connection with others. I need understanding. It’s a long road and will probably always be a winding one. But I’ll persist and continue to heal because I know my mom would want me to.

Tribute: My Beautiful Mom Showed Me What Strength and Courage Are

Tribute: My Beautiful Mom Showed Me What Strength and Courage Are

mikegaeta

“The real political task in a society such as ours is to criticize the workings of institutions that appear to be both neutral and independent, to criticize and attack them in such a manner that the political violence that has always exercised itself obscurely through them will be unmasked, so that one can fight against them.” –Michel Foucault

Despite my family’s best efforts to care for her and make sure she received adequate medical and mental health treatment, my beautiful mama passed away prematurely on February 27 at the age of 66.

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My mom at around eleven years old

My mom was the daughter of Mexican immigrant farm workers and the youngest of eight children. She graduated from high-school and received her Associate’s Degree from Fresno City College, despite having to work in the fields with her family starting from a young age. She would marry her high-school sweetheart, my father, shortly after his return from the Vietnam War.

My mom was a devoted wife, mom, sister and aunt and would defend her family fiercely from all injustices and dangers. One of my earliest memories of her protecting me involves her confronting an older boy who was bullying me when I was in first grade. In talking with him, she convinced the older boy to act as a bodyguard for me against any further bullying from anybody.

When she was not busy working or advocating for us in our schools, my mom enjoyed hosting and feeding extended family and our friends. Whether with her lasagna or albondigas soup, my mom would regularly showcase her excellent cooking skills. Her menudo was particularly good. To this day, my dad adamantly says he has never had menudo as good as my mom’s. In recent weeks, my cousins have reminded me how central my mom’s love, charisma and generosity were to our larger family’s closeness and happiness.

My mom also loved and served the Lord dutifully. Indeed, the two things that made her happiest were being with friends and family and praising and sharing the “word of God”

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My mama with my sister and me.

with others. Her faith in and love for God shaped most of her relationships and many of her decisions. The joy she expressed in her faith would provide the ultimate benefit to one of her childhood friends when they would reach their 20s. My mom gave her friend religious testimony and counseling that literally saved her friend from a dark, depressing time. I learned about this in the tribute my mom’s friend gave at the funeral service. “I wanted that joy,” my mom’s friend said.

While the immediate cause of her death was kidney failure, I know the main culprits are a negligent and abusive healthcare system and callous and inhumane government. My beautiful mama began exhibiting signs of a serious mental illness as early as 2003. She began claiming people were out to get her and that microchips and hidden cameras were being used to track her movements and interfere with her thoughts.

After years of witnessing her neglect her diabetes and put herself in dangerous situations numerous times, I began intervening to try and get my mom help in the summer of 2007. By then and much to my agony, my mom was hearing voices and talking to herself. Little did I know how virtually impossible it would be to get the help my mom desperately needed.

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My mom and me at my graduation from U.C. Berkeley.

From top to bottom, the healthcare system showed a constant disregard for my mom and our family. Medical doctors and hospitals had little patience and sympathy for someone who frequently would become distrustful and non-compliant (Patient Dumping from a Son’s Perspective). Skillful and caring counselors and psychiatrists we’d interact with were few. Even then, there was little they could do, given my mom did not believe she was ill and refused to take psychiatric medicine.

And while there is a legal basis to involuntarily hospitalize someone against their will, authority figures would regularly find my mom “self-directing” enough as the reason for them not to take action. For example, numerous police officers would say like pre-programed robots, “A person has to be lying down naked on the railroad tracks for us to take them in.” Hospital social workers would ask me “What does your mother want?” when I would request a psychiatric evaluation. Me saying “She wants to be with her family,” would garner little sympathy.

When she was homeless and living in a car for a time, I pointed out to a representative from the Californian Department of Public Health that she meets involuntary hospitalization legal criteria, since she was homeless as a result of her mental illness. I was told that, “Technically, a car roof is a roof over one’s head.”

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Mom and me visiting Monterey, CA in Dec. ’17.

Ultimately, in the end, though they were claiming to respect “civil rights,” they all were actually aiding and abetting a system that refuses to provide quality psychiatric hospitals and treatment and, instead, prefers to leave too many people to suffer, estranged from family and friends in the streets or thrown away in jails or prisons.

I moved my mother in with me in February ’16 because I could not continue to see her suffer and estranged from the family she loved and did so much for. I lost my mama twice, the first time to her mental illness and the second time, years later, to her physical illness. I was never able to have her be a fully healthy part of my life during most of my 20s and all of my 30s. Now I am 42 years old and will have to figure out how to rebuild and live my life without my beautiful mom.

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Mama was laid to rest wearing her favorite peach dress and white sweater and the necklace I bought her for Christmas.

I am currently seeing a grief counselor and it is clear I have a lot of trauma, emotions, and anxiety to work through. What will help me heal and prosper are the strength and courage my mom showed through her adversity. She never wavered from principles or lost her faith in the Lord or her will to live. I hope to become half as strong and half as principled in my life, particularly in my advocacy for a better healthcare and support system for caregivers and families. We deserve better. My mama deserved better. We love and miss you mom.

Patient Dumping From a Son’s Perspective: Hospitals Are Consciously Negligent

Patient Dumping From a Son’s Perspective: Hospitals Are Consciously Negligent

mikegaeta

Last month, a concerned passerby posted a video on social media of a young woman named Rebecca being unsafely discharged from a Maryland Hospital. Public outrage was so widespread and swift, the CEO of the hospital released a statement, within a few days of the incident, stating the hospital is “taking full responsibility” for their failure.

Newspapers from coast to coast ran articles on other incidents of “patient dumping” in the immediate aftermath. The Sacramento Bee, for instance, ran this article: Hospital dumps senior at homeless shelter.

Largely missing in the coverage and accounts, however, are details about what transpired inside the hospitals that led to such egregious outcomes. Is it incompetence or negligence? Who in the hospital is to blame? Are policies and laws contributing factors?

As a son of a mother who suffers from a serious mental illness (SMI), I’ve experienced several unsafe discharges and hospital mistreatment of my mom firsthand. Like Rebecca, my mom has been wheeled out of a hospital in the middle of a psychotic episode. Certainly, part of what makes people with SMI so vulnerable to this inhumane treatment is that many of them don’t believe they are ill. They often refuse or stop psychiatric treatment. When they stop taking their psyche meds, psychosis inevitably follows. As Cheryl, Rebecca’s mom, told CBS news: “She has to be on meds, otherwise she has psychosis. She will have a manic episode.”

In my mom’s case, she harbors deep delusions and paranoia about the medical system as part of her serious mental illness. She believes medicines are poison, so is prone to stop taking them at any given time, for example. This is all reinforced by voices that she hears: The Meds Are Poison Again

Over the course of the last five years, both my mom’s physical and psychiatric health have substantially deteriorated, due to her lack of self-care/adherence to treatment. Hospitalizations have become pretty regular events, as a result. While hospitals are limited by their own policies and government laws, and patients have the “Right to Refuse” treatment, on multiple occasions more should have and could have been done legally, procedurally and ethically to help and treat my mother.

Between 2012-2015, my mom was hospitalized at least a dozen times in Kern County and neighboring areas. For two of those years, she was homeless, living in a car. When I could, I’d travel down from San Francisco to be with her. I was mostly sidelined to talking with doctors and nurses on the phone, though.

As it turns out, I didn’t even know about most of her hospitalizations. I only found out about them by recently acquiring her medical records from various hospitals. Since moving my mom in with me in February 2016, I have seen the process play out three times firsthand. I have a unique experience and vantage point, so to speak.

Patient In, Patient Out

Like clockwork, starting on day four or five, hospitals begin to make clear that they want my mom discharged. The physical therapist usually gets deployed at this time (A patient has to have a minimal amount of strength to be safely discharged.) and the case manager and doctor start discussing discharge plans. This is the very time table I’ve experienced, even when my mom’s vital signs aren’t stable and she’s physically very weak.

This inevitably leads to breaches in ethics and law. In a 2012 incident, for example, a Kern County hospital would have discharged my mom unsafely AND illegally, if not for my presence and direct advocacy. The attending doctor wanted my mom to begin taking insulin as part of her treatment plan. One problem: my mom had developed cataracts, so was incapable of administering the insulin shots to herself. The doctor and I agreed that she should go to a skilled nursing facility for assistance.

IMG_0063Despite this, the hospital was planning on discharging her on what would have been the fourth day. Upon talking to a Director, it became clear the Director was ignoring the doctor’s treatment plan and placement recommendation. She told me that my mom could just continue to take oral meds! I told her I expected my mom to be placed in a skilled facility until she was able to administer the insulin herself and that I knew discounting the doctor’s treatment and recommendations in a hospital discharge plan is legally prohibited.

The hospital acquiesced reluctantly. It’s hard to imagine this absurd situation happening if my mom was wealthy and not on government insurance. Whatever the exact reason(s), the hospitals are obviously trying to minimize costs.

During Psychosis, Inhumane Treatment is Policy

I should say at this point that my mom has never been successfully treated for her SMI. Suffice it to say, the chances of her experiencing an acute psychotic episode when hospitalized are very high. In this state, she will start openly accusing the hospital staff and doctors of trying to kill her. She’ll begin refusing her medicine, try to pull out her IV, become hostile and sometimes a bit combative. She’ll, also, often times try to leave the hospital on her own accord.

I’ve seen this happen, firsthand, and can only imagine this was par for the course when she was estranged from me. And while I’ve always known that hospitals were limited in what they could do to my mom when she’s having an acute episode (They’re not psychiatric hospitals after all, right?), I have quickly learned that they regularly and consciously do much less than they can to stabilize and keep her safe, despite her psychosis.

I experienced this directly in December of 2015. My mom was hospitalized due to respiratory complications related to her congestive heart failure. Like so many times before, she had stopped taking her medications. She was almost completely non-responsive by the time she arrived and was immediately placed on a respirator. On day three, upon my arrival, I would find out that her glucose was above 700 when she was admitted!

On day six, merely two days after being taken off the respirator, my mom began to have an acute psychotic episode. We were essentially abandoned by hospital staff when it became clear that my mom was going to continue to refuse treatment, after pulling out her IV line. Her room was directly in front of the administration desk, so there was no way, given the commotion, that the charge nurse and other supervisors weren’t aware of what was going on.

The hospital staff left me in the room alone with my mom, as she became increasingly agitated and began demanding that she be taken home. I requested a psychiatric evaluation, in the hopes that she would be considered a “danger to herself” and placed on a 51/50 involuntary hold.

Under CA law, a 51/50 authorizes the involuntary hospitalization and possible treatment of someone experiencing a psychotic or suicidal episode. I say possible because a person can be involuntarily hospitalized, but may still be released without undergoing treatment, as has been the case several times with my mom.

As we reached the two-hour mark of this crisis, it became clear that the hospital didn’t want to take any real responsibility or time to help and treat my mom. At one point, the night nurse, who had just started his shift, was willing to restrain my mom, after seeing my mom almost fall trying to get out of her bed, but was overruled by his supervisor. Eventually, my uncle would arrive, after being called by my mother. The hospital would use his willingness to aide my mom in their desire to wash their hands of the situation.

After some argument, the administrator contacted the attending doctor in order to help decide what to do.

As the audio indicates, I ended up arguing with the charge nurse about having a mental health (MH) crisis team (“Metro Evaluation Team”) to come to the hospital to do a psychiatric evaluation on my mom. Hospitals have their own psychiatrists, but in some counties like Kern County, MH crisis teams are also available. I was told they could go to the hospital by an operator I talked to with the county’s MH crisis line. I had called the crisis line about an hour before, just moments after my mom took out her IV. As one can hear, however, the charge nurse denied that the MH crisis team could do that. She went so far as to misrepresent the involuntary treatment process in her argument.

When someone is going to be involuntarily treated for their psychiatric illness, they are first medically stabilized. This way, the doctor can be sure there isn’t an underlying medical problem causing the psychosis. She referenced these steps in the process to claim that the Metro team couldn’t psychiatrically evaluate anyone at a hospital at all, unless the person was medically stabilized first.

My argument was there was no reason why my mother couldn’t remain there to be stabilized before she was transferred to a psychiatric facility, assuming the MH crisis team deemed her needing involuntary psychiatric treatment. It’s possible she misunderstood the process herself. I find it more plausible that she intentionally misled me.  Either way, she didn’t even bother to call the MH crisis team to get clarification or advice. I couldn’t call the crisis team myself. The hospital is required to make the call. That’s common policy in many counties that utilize MH crisis teams.

My mom would be effectively denied a psychiatric evaluation, even though she was in the throes of an acute episode. The charge nurse had actually placed the order for the hospital psychiatrist, but in the end, effectively deemed my mom “mentally competent” enough to have her sign herself out “against medical advice.” The administrators obviously knew medically/physically that my mom was not well enough to leave the hospital, so were insistent she sign the form. The hospital would supply my mom with a wheel chair and have the nurse wheel her out to a waiting cab. The nurse would tell me minutes later that he was ashamed of what happened.

Shortly after this incident I moved to Stanislaus County and moved my mom in with me to try and take care of her. I’ve managed to greatly reduce the frequency of her hospitalizations, but three have still occurred under my caretaking. Compared to Kern County, my experience with hospitals here has been very similar. The discharge is rushed and the hospital becomes neglectful, at best, when she starts to become resistant to treatment. When I requested psychiatric evals during her first two hospitalizations, I was met with the same determined and concerted opposition I experienced that day in Kern County. Whether it was the charge nurse or the hospital social worker, hospital admin and staff insisted she didn’t need one.

My experience clearly suggests that it’s standard practice for hospitals to duck responsibility for a patient’s well-being when that patient experiences a psychotic episode. After all, if hospitals are willing to neglect and jeopardize my mom’s health in front of me, just imagine what they do to patient who doesn’t have a family member or someone to advocate for them during their hospitalization.

Cheryl stated that her daughter had been missing for two weeks before she saw her on IMG_2511the video. Since then, fortunately, Rebecca has started receiving psychiatric treatment and is reported to be doing better. Clearly, other and better options are available, as this case has shown. And even with my mom, we just recently experienced a different, better outcome in her most recent hospitalization a few weeks ago.

My mom was restrained for the first time ever in her history. The difference? Apparently, her having a catheter attached to her jugular to begin dialysis. She attempted to pull on it when she was in an acute episode. The countless times she has pulled out her IV lines and has tried to walk out of the hospital, despite being medically unstable, have never proven to be enough, in contrast.

My mom would eventually calm down and cooperate long enough for her to be stabilized medically. She’d be safely discharged on the eighth day. As I told one of the hard working nurses, to me, it was a good hospitalization for my mom overall. People with serious mental illness and families like mine deserve more help, care and respect than we often receive. Stop the patient dumping and unsafe discharges now!