First Mom’s Mind, Now Her Body

After taking time off work, I returned to teaching in January. Needless to say, that and caretaking are keeping me plenty busy. As I write this, I actually have a stack of midterms besides me waiting to be graded. I suppose if I had more public interest in my blog, I’d figure out a way to make time to post more regularly. Still, three months since my last posting is too long a time period. (For those interested, I do give short updates and commentary on Twitter from time to time: @maestrogaeta)

Sadly, my mom’s health continues to deteriorate. As I’ve mentioned in previous posts, my mom has developed various serious medical/physical problems. Most recently, she has developed kidney disease. It was discovered last summer (‘16), during a hospitalization for respiratory problems (i.e. congestive heart failure.).

I was surprised and dejected to learn about her kidney problem. Before I moved her in with me in February ‘16, I pored over a couple years’ worth of medical records, as part of my planning. I didn’t see any mention of real or possible kidney problems. Based on what I read online, kidney disease can be asymptomatic for a considerable length of time. Still, why a doctor never bothered testing for that, given her compromised condition even back then, is just more evidence, to me, how poor our healthcare system is, especially for the indigent.

At the time of her hospitalization, her kidney function was at 30%. Since then, it has continued to decrease steadily. Six months ago, it was around 20%. Three months ago, it was at 14%. This past week, her kidney doctor told us it was at 12%. It’s technically kidney failure, at this point. In this time, she has become weaker and more fatigued, which is part of the illness.

Her kidney doctor has of course recommended dialysis or a kidney transplant, but after initially agreeing to be prepped and assessed for those things, my mom changed her mind, as she is inclined to do. Indeed, her long history of refusing treatment is not confined to her mental illness. She didn’t effectively treat her diabetes for years, for example. Her current condition is a direct consequence of this. They don’t call diabetes the “silent killer” for nothing.

AboutPic
Years ago, around ’07, on a mountain bike ride somewhere in the Bay Area. Enjoying the view the best I can, trying not to worry too much about mom.

And while her diabetes is more or less controlled now, in the past year, she has decided to stop seeing an eye specialist, a neurologist, a neurosurgeon and has refused to continue treating her anemia. She didn’t like those “quack doctors” and doesn’t believe she is really ill. She regularly tells me that she doesn’t have kidney disease and that the labs are “screwing with the test results.” She says similar about her glucose readings at times.

Given all this, I’m just grateful that she is continuing to see her kidney, heart and primary doctors and that she is regularly taking most of her prescribed medications. There has been zero progress made in treating her serious mental illness (SMI), however, which comes as no surprise to me.

There was nothing in her past to indicate that she would voluntarily treat her SMI and I knew not to expect much from the county’s mental health services. Their programs aren’t designed to help someone as high needs as my mom and their level of organization and professionalism are so inadequate, that my mom has never been formally discharged, even though we haven’t communicated with their offices in three months. Perhaps they need to be audited?

Her doctors haven’t mentioned it, but it appears that my mom’s fragile physical health is exacerbating her psychiatric condition. (My mom essentially has the poor health more typically associated with someone in their 80s. My mom is 66.) My mom has been highly agitated and hyper-fixated on her voices and delusions the last few months. She has been, literally, engaged every waking minute in “spiritual warfare.” At particularly acute times, she tells me the “evil voices” are actively saying that she’s going to die soon. Much of what she is saying and doing aren’t new, but the intensity and duration are deeper and longer. She is also expressing her general unhappiness with living in the area more.

I go about my day the best I can, monitoring my mom, sometimes arguing, and at times just trying to calm her down. I’ll try to engage her in some normal conversation. I’ll try to find her something to do. When she’s in a really bad place, I’ll pray with her and sage her room. My emotions run a bit all over the place as I see my mom slipping away. Eight or so years ago, when I first started to try and help my mom, I thought/hoped eventually she’d be able to return to work and we’d be able to rebuild our family relationships. Now, I’m just wondering when and how peace is going to finally come for us. Ideally, it would be while we are still alive.

Latinos/as Are Deserving of Access to Adequate Mental Healthcare, Especially My Mom

As a caretaker and advocate for my mom, I’m constantly reminded how much of what we have experienced, in dealing with my mom’s serious mental illness (SMI) and the mental health system, is reflective of the Latino/a experience. From problems with acquiring basic access to MH services, to trying to achieve adequate treatment and support, to the unresponsiveness on the part of MH professionals, to navigating cultural barriers in my family/community, all have been unnecessarily daunting. In our case, they have proven to be impossible to surmount in getting my mother adequate treatment.

Percentage wise, Latinos/as currently make up around 18% of the U.S. population. Around 16% of Latinos/as have experienced a mental illness in the last year, compared to 20% of whites, 16% of blacks and 13% of Asians.[1]

In respect to Latino/a subgroups, young Latinos/as have higher rates of attempted suicide compared to whites. For males, it was 6.9% compared to 4.6%, respectively.  For females, it was 13.5% compared to 7.9%.[2] Among U.S. born Latinos/as, Mexican-Americans and Puerto Ricans experience higher rates of mental illness than Cubans and other Latinos/as.[3]

The rates may very well be higher, however, given the multiple barriers preventing Latinos/as from acknowledging they have a MI and receiving adequate treatment. In the case of my mother, it took years to get her an official diagnosis. (In the case of my father, the PTSD he developed from the Vietnam War wasn’t officially diagnosed until recently, after he retired.)

Regardless of race/ethnicity, denial is a common response towards MI. This was very much the case with my mom and family. In hindsight, it was clear there were times when my mom was harboring extreme delusions and experiencing bouts of mania. At crisis times, the situation would swing between heated arguments with her to just avoidance. We viewed her “locura” (“craziness”) as just part of her personality.

More specific to Latino/a families than denial is pride. We don’t like others to see our weaknesses. We don’t want to admit we even have any. For most of us, not being many, if any, generations removed from working class or impoverished backgrounds instills in us a deep-seated perseverance; an attitude encapsulated by the slogan “¡si se puede!”

In the case of my Mexican-American family, my parents grew up poor, working in the fields of the California’s Central Valley. As my dad describes in a story he likes to tell: “Teachers would ask us when school started in fall what we did over the summer. The white kids would say they went to Disneyland. I would say, ‘I worked.’”

Our pride certainly led us to downplay any problems with my mom. Our family was “successful.” Together, my parents made enough income to be considered “middle class.” Latino/a families are also very private. We don’t like to “air our dirty laundry.” Problems

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Mom and I at my graduation from U.C. Berkeley in 1999.

are settled within the family. This extended to family gatherings. At times during these events, I would take it upon myself to try and help my mom socially navigate, in the hope of concealing any petulant and irrational behavior.

Attending extended family functions with her began to occur less frequently, however, as my mom’s mental health abruptly deteriorated.  She’d begin accusing the family of working for the F.B.I to spy on her. She’d begin accusing my dad of trying to kill her by putting poisons in her food and drink. She’d wake up in the middle of the night and insist she heard people trying to get inside the house in order to kill her. Suggesting she see a psychiatrist just made my mom angry and hostile, and everyone more miserable.

About 3-4 years into this, into my mom exhibiting a SMI, I began to take a more direct role in trying to get help and treatment for her. By then, my parents were divorced, but still living together. My mom was unemployed and uninsured, and her psychosis was a constant. She had nowhere else to really go and my dad was reluctant to kick his high-school sweetheart out of his house. I rolled up my sleeves one summer and went to work.

Lack of health insurance was a significant barrier for us when I first tried to get her help. Indeed, it’s a problem experienced by too many Latinos/as. Until recently, 30% of Latinos/as lacked health insurance, compared to 11% of whites. That percentage has been significantly reduced, fortunately, due to the passage of the Affordable Care Act.

In 2008, however, George Bush Jr. was still president and my mom didn’t have an official diagnosis, essentially proof of a disability, we could use to apply for Medicaid.

I had little choice but to move my mom in with me in San Francisco. SF was in its early years of providing health care services to indigent, uninsured residents. I enrolled my mom and we began accessing community medical and mental health services.

Fast forward nine years later. Despite my best efforts, my mom still remains untreated. In that time, my mom has been released from hospitals against my wishes, homeless, and has developed various serious medical issues. Accessing MH outpatient services, whether community centers or county services, has proven to be entirely fruitless. Why see a psychiatrist, let alone take psychiatric meds, if you don’t believe you’re ill and believe the medicine is poison? I should mention, they won’t even see a person, unless the person makes the appointment themselves!

There are gross inadequacies and structural problems in our MH system. Nothing makes this more plainly obvious, perhaps, than the fact that our country’s largest MH treatment centers are prisons and jails. At a minimum, to address this, laws that prevent people like my mom from being effectively treated need to be amended, or ended, and the lack of psychiatric beds should be viewed for what it is, a national crisis!

More and better family education and outreach are essential too, in order to mitigate the cultural barriers that play a part in impeding Latino/a families from realizing and accepting they need help (The video above is a good example of what that looks like.). Truly universal healthcare is also a must. The last thing a family that is going through a MH crisis needs is more stress caused from excessive hospital/medical bills. Training and employing more culturally responsive and competent MH staff and psychiatrists, and expanding community MH centers/clinics, are also very important. The Latino/a mental health center we utilized in SF was a blessing in helping us finally get an official diagnosis for my mom.

I’ll advocate for these things for the rest of my life cause my mom, my family and community deserve respect and a decent quality of life.

Footnotes:

[1] Rates of mental illness are from 2014 data provided by SAMSA.

[2] From a CDC 2016 report: https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=24

[3] From a 2008 article in the American Journal of Psychiatry: http://ajp.psychiatryonline.org/doi/abs/10.1176/appi.ajp.2007.07040704

 

The World from My Mom’s Perspective

(Please consider making a donation at my mom’s GoFundMe page: https://www.gofundme.com/ym939shg)

There’s always something relating to our inadequate healthcare system I could write a blog post about. Given, however, that this month, June, is my mom’s 66th birthday, I decided to give my mom more of a direct voice. My mom doesn’t know that I have a blog or do any MH advocacy work for her, so I just told her I’m interviewing her for personal reasons, to record some family history.

MomNapa
Took mom to “wine country” for her birthday. I had just moved her in with me in San Francisco.

I would love nothing more than my mom to be psychiatrically stable, willingly engaged in a treatment plan and able to talk openly about her serious mental illness. Instead, what follows is a person’s life that has essentially been robbed from her, in large part, due to a lack of access to adequate mental health treatment. My mom has no insight into her psychiatric illness and doesn’t even believe her physical/medical problems are severe. She’s still a person filled with aspirations, fears, accomplishments and disappointments, all the same.

Me: Given your health problems, what do you miss being able to do the most?

Mom: Just getting up and going to run an errand. Even if it’s just going to buy stamps or things that we need. I miss that a lot.

Me: Your diabetes is more stable, but are you still uninterested in taking insulin, like your doctor suggested?  

Mom: I’m not interested. I had a terrible experience with it. I think the US is too sloppy with the FDA [Federal Drug Administration]. It was closed for years, not even doing their job. (My mom insists it was closed and that she used to have a newspaper clipping to prove it.)

Me: Do you actually believe you have diabetes?

Mom: I believe it’s brought on by evil spirits.

Me: How does that work exactly?

Mom: They come into your body as worms…and as minute organisms.

Me: So that’s how you got diabetes? 

Mom: Yes. I was a very healthy woman.

Me: A more recent issue is your kidney issue. How’s treatment going?

Mom: I’ve had a little bit of improvement. And I’m praying for a total healing, so I’m not really worried about it.  

Me: Remember that your kidney doctor said they were functioning at 16% the last time we saw him. Do you not believe they are going to get worse? 

Mom: No.

Me: Are you interested in prepping for dialysis and a kidney transplant?

Mom: No.

Me: What’s going to help your kidneys improve then?

Mom: Prayer and lots of faith. Like the Lord says, “Blessed are those who have not seen, but still believe.”  

Me: Do you even believe you have kidney issues?

Mom: There is some trouble, but it’s demon oriented.

Me: So, you came to live with me, initially, around 8 yrs ago in San Francisco. That didn’t workout. Around a year after you moved out, you became homeless. Where was God in that time?

Mom: He has been there, but the devils attacked our car. They wrecked into us terribly. (My mom and my uncle, her brother, were evicted from their apartment and essentially homeless, living in a car, for close to two years.)

Me: OK, but why no housing for almost two years?

Mom: Because they kept on breaking into our house whenever we would leave.

Me: [Interrupting] OK, but why would God let that happen to you?

Mom: It’s not that he allowed it. He was overwhelmed with so much work everywhere! He can’t be somewhere and anywhere at every second, like people think. 

Me: Do you think you might have mental health issues that need to be addressed?

Mom: Vicki (her counselor) is on my lying list. She was supposed to visit me at home last time and was a no show.  

Me: That wasn’t the question. What do you think about possibly having a mental illness?  Did Dr. T (real name withheld) in SF ever diagnosis you with anything?

Mom: I don’t care about Dr T. He started out being reasonable…at first. And then it got too heavy for him. He started being influenced by the other side.   

Me: Have you ever taken any psychiatric drugs?

Mom: I took what he recommended, but it made me feel drunk. (She took a small dosage of Abilify, too small to even have any real affect. The Dr. started her off at a small dosage, in order to build trust with her and reduce the side effects. Her current psychiatrist has also tried to get her to start taking a small dosage of medicine.)

Me: Anything else?

Mom: Zyprexa. I’ll take my half a pill.

Me: You need to take it every day, like the doctor said, but you don’t.

Mom: Because it was too much.

Me: OK.

Me: What do you have to say to someone that may think you have a mental illness?

Mom: What are the facts? Because I say there is “spiritual warfare” everywhere? You can go to a restaurant. You can go to a church.  There are people of the dead in there.  You can discern it. And sometimes they’re too nosey. And when they are too nosey, they are spying on you. 

Me: Who? The devil, the government, who? I lose track of everything that you blame.

Mom: The ones who are serving the enemy, whether it be a witch, a warlock, an anti-christ, a Satanist or a devil. 

Me: Is the FBI still following you?

Mom: <scoffs> They, umm…. They try to get in with the Sherriff’s office down the street or the police everywhere.

Me: So, the answer is “yes.” The FBI is still after you.

Mom: <Getting agitated.> No, I said the police! They get hoodwinked by the witchcraft and Satanists! 

Me: OK. So, what are some plans/goals of yours?

Mom: To get healthier, get better. I want to see and visit my family in Bakersfield more.  I want to meet religiously righteous people and make new friends.

Me: Name one thing you like about living with me.

Mom: That I get to see you more. (Aside from her brother, she was estranged from the family for years.)

Me: Name one thing you don’t like.

Mom: You don’t feed me enough.

Me: Oh brother.  (She means I don’t feed her what she wants to eat enough.)

This interview misses my mom’s more charismatic, funny and caring side. But it does make clear enough how much my mom is living in an altered/delusional state. Indeed, my mom’s mental illness has worsened, due to going untreated for so long. She hasn’t always heard voices, for example, and her delusions have increasingly become more elaborate and detached from reality.

Despite her steady deterioration, experience with homelessness and repeated hospitalizations, various MH and law enforcement authorities have regularly deemed her “self-directing enough” to not warrant involuntary psychiatric treatment. Her predicament is, also, too often ignored by MH advocacy groups that prefer to focus on people that have recovered and positive stories. The MH system is broken and has denied my mom a chance at recovery and our family of appropriate healing and sufficient peace. She’s deserving of love and dignity, though, which is why I’ll never stop fighting for her. Happy Birthday, mama! (I’m taking her to Monterey, CA next week as a birthday gift. She hasn’t been there in around 15 yrs.)

Logan Is a Comic Book Movie, But Also an Honest Take on Caregiving

As a comic book fan, I enjoy watching movies and TV series based on comic books. When they contain meaningful parallels with and/or commentary on life, I experience even more elation. Such was the case when I saw the movie Logan this past week. As a longtime fan of the X-men character Wolverine, I was enthralled by not just the acting, action and story, but the relationship between Logan and Professor Xavier as well. As a caretaker to a parent with a serious mental illness (SMI), the movie portrayed the nature of the work I, and so many others, do brilliantly and poignantly.

Being based a bit in the future from most other X-men movies, both characters are considerably older than how they are normally portrayed. Professor X is in his nineties and afflicted with a type of degenerative brain disease, perhaps Alzheimer’s. He is unable to take care of himself and, at times, due to his powerful telepathic powers going haywire, he becomes an imminent threat to others around him.  

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Logan giving medicine to Professor X to prevent psychosis and seizures.

Alzheimer’s isn’t technically a SMI like schizophrenia, but there are similarities. Like with schizophrenia, people with Alzheimer’s can experience delusions and psychosis. Indeed, the immense difficulty in caring for someone with such a debilitating illness is captured in the very first scene between Professor X and Logan. Their relationship in the film takes an explicit father and son quality.

In this scene, Professor X is acting out a delusion. Ranting and raving, and erratically moving around in his electric wheelchair, he doesn’t even recognize Logan, the man he personally welcomed into the X-men and nurtured for decades. No backstory needs to be given to understand that Logan is exceedingly tired and frustrated with their situation. He engages with Professor X very little. He is most intent on giving the Professor medicine to help him calm down and sleep.

Research confirms the great strain and toll. According to the National Alliance for Caregiving (NAC), for instance, 62 percent of caregivers of people with SMI reported that their jobs have made their health worse. Such possible health problems include physical ones, like chronic conditions, along with psychological, such as stress, anxiety and depression. Some caregivers even resort to substance and/or alcohol abuse. (1)

Along with battling virtually all of these problems, Logan also suffers from PTSD and suicidal thoughts. As any Wolverine fan knows, much of this can be attributed to his personal life and history. He has suffered tremendous pain and loss. Being Professor X’s caregiver should be seen as exacerbating his personal problems, however.

A large part of the strain and toll experienced by caregivers can be attributed to the hours required in doing the work. Along with regular cooking and cleaning, bathing and dressing and administering medications, there is constant monitoring of our loved one’s welfare, including through the night. There are also countless hours involved in case management and advocacy. Calls to doctors offices, figuring out health insurance rules and policies, and trying to access government services are all part of the job description. Financial stress is included and results from low pay and there being considerable unpaid labor. In 2007, the estimated value of unpaid work for caregivers was at least $375 billion. (2)

There is also the stress of dealing with our loved ones when they are agitated or in a psychotic state. This aspect is, also, portrayed succinctly and beautifully in the first scene between Logan and Professor X. The difficulty for Logan in seeing and confronting Xavier when he is in a “crazed” state is made obvious before Logan even enters his room. A friend warns Logan that the Professor is having a “bad day.”

Animated GIF  - Find & Share on GIPHY

Logan is all too familiar with the unpleasantness of seeing and hearing psychotic behavior. His face when he enters the Professor’s room says it all. He is exasperated and even a bit resentful. The first time I heard and saw my mom talk to herself, I was deeply saddened and traumatized. Several years later, I’m more accepting and better at interacting with her, but seeing and hearing her talk with herself in an acute state is still very disconcerting. And while I try not to, I can get exasperated and resentful, too. (Below is my mom having an acute episode. She often thinks she’s or a family member is in danger. She covers herself when in bed to prevent “evil spirits” from entering her body.)

There are strategies one can employ and things one absolutely shouldn’t do when a loved one is having a psychotic episode, like become angry and raise one’s voice. But frustration and impatience are inevitable, especially given the very limited social and familial support caregivers of people with SMI are given. According to NAC, more than 50 percent of caregivers feel isolated and alone. Relief or respite from duties, in our money driven society, is a luxury. Actual training for caregiving is virtually non-existent. And yes, estrangement from other family members and friends is a common phenomenon.

Logan takes place in a fictitious, dystopian world where mutants are on the verge of extinction, due to state sanctioned persecution and violence. The X-men are gone and Logan and Professor X virtually have nobody to rely on but each other. In the real world, mercenaries with robotic arms aren’t chasing us and our loved ones down, but we often feel we are forced to claw for survival for ourselves and loved ones, nonetheless. Along with having little legal recourse in getting help for my mother’s untreated SMI, I’m thoroughly fed up dealing with impersonal and unresponsive government and health care bureaucrats who make it clear, time and time again, they are pretty indifferent to our plight.

Despite the difficulty of it all, Logan’s loyalty to Professor X is unwavering. One of the underlying themes in the movie is the importance of family. Keeping Professor X safe seems to be the main reason Logan ends up not taking his own life. Interspersed in the regular feuding between them, there is obvious compassion and caring.

In a similar way, caregivers of people with SMI know that as difficult as things are, our loved ones are safer because of our commitment to them. They have already suffered too much, some of them, like my mom, spending time homeless. In the end, at least our consciences will be freed from guilt, knowing we did what we could. Finding and living in peace is a universal noble goal, after all. And it’s what my favorite comic book character is able to fortunately find by the end of the movie.

Resources:

1.) US News 2.)Caregiver Alliance

Some Musing on Obamacare

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” ― Martin Luther King Jr.

Zealous anti-Obamacare Republicans control Congress and President Elect Trump is still promising to make the repeal a top priority once sworn in, unlike some other campaign promises he has seemingly begun to back away from. In response, rallies were held across the country yesterday in defense of “health care for all.”

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A health care rally in front of SF City Hall.

Another campaign on social media has generated numerous personal stories and pleas on how Obamacare (aka Affordable Care Act) has saved people’s lives by providing them with insurance coverage.

What’s missing, however, in these stories and discussion/debate about defending the ACA is recognition that there is still much that needs to be improved, particularly for the most vulnerable. As it is, there are around 30 million people still without insurance and too many, if not most, are underinsured. As a caretaker to someone who has a serious mental illness and various serious medical problems, I’ve seen firsthand how woefully inadequate our system still is. The question to me is: how do we defend the good things AND fight for more?

Some Egregious Problems

The expansion of Medicaid, at least in CA, has exacerbated the already high doctor to patient ratio. It took me weeks just to find a doctor when I moved my mom in with me. Dozens of providers told me they weren’t accepting anymore Medicaid patients (Medicaid is called “Medi-Cal” in CA.). When I finally found a doctor for my mom, the first available appointment was two months away. There are scattered reports that confirm this problem. And this says nothing about how difficult it is to get the doctor to respond to a phone call in a reasonable time period.

As I chronicled last January, my mom was blatantly abused and neglected by a hospital when she slipped into an acute psychotic episode. Against my wishes, as her next of kin, and despite her being in an obvious psychotic state (She didn’t even believe she was in a “real hospital.”), hospital supervisors let her sign herself out and staff wheeled her to a taxi cab. (Read the story here: Me vs. The Hospital) Understaffing is an issue. The hospital didn’t have a psychiatrist on duty at the time to do an assessment of my mom. But flagrant disregard for people with SMI and poor training are also to blame.

There is a severe shortage of psychiatric beds. In 1955, there was 1 psychiatric bed for every 300 Americans. In 2010, there was 1 psychiatric bed for every 7,100 Americas. In California, the situation is particularly stark. According to a 2012 report by the Treatment Advocacy Center, the state eliminated 16 percent of its beds between 2005 and 2010, leaving just 14.2 public psychiatric beds per 100,000 people – far below the 50-bed standard considered necessary to provide minimally adequate mental health treatment. In 25 counties in the state, there were no psychiatric beds at all. This leads to people in mental health crisis clogging up emergency rooms, and many more being warehoused in jails/prisons, which are the primary treatment centers in the country today. My mom hasn’t been successfully treated for her SMI, in large part, due to this gross shortage.

Even with insurance, the severely sick, disabled and poor are given death sentences. My mom’s physical health has deteriorated severely. She suffers from congestive heart disease, anemia, diabetes, high blood pressure and kidney problems. The lack of monitoring and coordination between her doctors is a disgrace. Her state is such that medicines are constantly being changed and she requires close and daily monitoring for any adverse changes in her condition. I shouldn’t have to go periods of weeks or months without talking with her doctors and/or receiving assistance. And without me for regular transportation to weekly doctor appointments, she’d probably already be dead.

She should be in some sort of assisted living facility. In the least, she should be receiving regular visits in the home from doctors, counselors and even clergy as part of a medical treatment team. These things are either difficult to access, due to costs, or aren’t available at all in particular counties.

Solutions

From my standpoint, we still need a drastic overhaul of our healthcare system. This includes a single-payer system that would help get healthcare costs under control and allow the government to use its leverage to negotiate reasonable prices for medications. It also includes prioritizing preventive care, adequate treatments and programs, including home visits by medical/treatment professionals, for people with substance abuse and/or mental illness, and adequate funding and staffing for hospitals. In the case of psychiatric hospitals/treatment centers, the repeal of the Institutes for Mental Disease (IMD) exclusion is an absolute necessity, in order to insure a substantial increase in funding for psychiatric hospitals.

The gains made to save and improve people’s lives under Obamacare obviously need to be defended, but not at the expense of ignoring the vast improvements that people deserve and still need to be made. Otherwise, too many are still condemned to misery and suffering.

Right now, Single Payer is a legitimate, possible alternative that would expand coverage and improve care immediately, while protecting the gains recently made with ACA. In the case of CA, Democrats have a super majority in the legislature. What a heck of a message it would send to Trump and company if CA used this opportunity to truly expand healthcare to all its residents by passing Single Payer. Check out more info. about the campaign here: https://healthycaliforniacampaign.org/

Estranged at Christmas No More

The end of the year holidays and winter cold were some of the hardest times for me and my family the last handful of years. My mom’s housing was unstable at best. The worst of it was punctuated by her being effectively homeless for two of those years. In that time period, very short housing stints aside, she primarily lived in a car.

I’d do my best to spend Christmas Day with her, regardless of her immediate living situation. I’d drive down to Bakersfield or Fresno from the Bay Area, put her up in a hotel room and take her to Marie Callender’s for a Christmas meal, her preferred choice. The following day, I’d usually take her shopping for some clothes and undergarments, if need be. She’d regularly have minimal clothing. Clothes that she’d buy or I’d buy for her would typically disappear within months. She’d claim people would steal them from her car or from the places she was living in. I figured that she probably threw them out, as she routinely did in the past, upon believing that the clothes would become contaminated with toxins or spoiled by evil spirits.

This is what the holidays were for me. There was no real respite or joy from my time off work. It was just a sad reminder of our inability to get any care or treatment for my mom’s serious mental illness. I was planning on doing similar last year for Christmas. I was mentally preparing myself for the trip to Bakersfield the next day, when my uncle called to tell me that my mom was in the hospital with respiratory problems.

I got what information I could out of him. He was always short on information, in his usual enabling fashion. He covered for my mom and had been showing signs of deteriorating mental health himself the last couple of years. Like my mom, he denied she even had a serious mental illness.

The attending nurse told me, unsurprisingly, that my mom’s glucose was high and that my uncle was stubbornly refusing her insulin. Both my mom and uncle believe that it’s a poison and dangerous for my mom. The nurse explained that her high glucose was exacerbating her lung infection. I told the nurse that I would be there the following day, on Christmas, and, as her next of kin, I wanted them to begin administering her insulin.

When I arrived the next afternoon, I wasn’t prepared to see my mom on a respirator and essentially lifeless. My heart sank and I could feel my blood pressure and temperature immediately rise. As soon as I could, I talked to the attending nurse about her status. The nurse, a different person than the one I talked to the day before, informed me that her glucose was over 700 and that my uncle was still denying her insulin! My mom’s glucose had reached the 500s various times in the past, but I didn’t even know glucose could get into the 700s. I was in disbelief and fumed with indignation towards my uncle.

Aside from mentioning my uncle was intimidating, the nurse had no real explanation as to why they weren’t treating my mom with insulin, after I told her that I requested it on the phone the day before.  Nonetheless, I explained my mom’s psychiatric condition and history to her, and told her to start administrating insulin immediately. Despite wanting to put my uncle through a wall, I diplomatically suggested he go home and rest. Once he left, I told the hospital staff to tell hospital security that he was not allowed to see my mother.

My mother’s condition slowly improved, once they began administering insulin. Altogether, she would be in the hospital almost a week. As the initial few days hinted, though, the whole experience, from beginning to end, would be a proverbial nightmare. The hospital would ultimately discharge my mom unsafely and prematurely, against my wishes.

My mom would slip into an acute psychotic episode and begin refusing treatment. She would begin exclaiming maltreatment by the hospital staff and say she wasn’t even in a “real hospital.” At one point, she tried to get up and walk out, although she was too weak to walk and the urine catheter was still attached to her. The hospital would eventually take her out on a wheelchair to a waiting cab. This blog was initiated primarily by that experience. From January, the post about it can be found here: Me vs. the Hospital

I formally filed complaints with both the hospital and the California Department of Public Health (CDPH). Those complaints/investigations would prove unfruitful, however, just as I imagined they would. I’ve complained to the CDPH before about a different hospital. In that case, a hospital was trying to discharge my mom without considering the recommendation of her attending physician. The doctor wanted my mom to start taking insulin.

At the time, my mom was more amiable to the idea. Having cataracts, though, she was unable to administer the shots herself. I was lobbying the hospital to send my mom to an assisted living facility, where someone could administer her shots. The hospital was ready to discharge her without her insulin prescription, though. The hospital director was predictably none too happy that I had talked to the doctor at length about my mom’s care plan. Ultimately, the CDPH would find no violations in their investigation, even though it’s illegal for hospitals to discount/ignore doctor recommendations as part of their discharge plan.

This more recent investigation was an obvious joke from the start. The investigator took three months to contact me, from the time I filed my initial complaint. By then, I had already talked with one of the hospital administrators about some of the things that occurred there. I just mentioned my frustration with some of the staff’s insensitivity and the ignoring of my request over the telephone to administer my mom insulin. I didn’t want to tip her off to my complaint to the CDPH about the hospital discharge, so I didn’t mention it at all.

By the time the investigator contacted me, I was sure the hospital did what it had to do to cover its tracks. To top it off, the investigator sounded meek and unprepared for the job over the phone. She seem entirely disinterested in what I was divulging to her and didn’t once ask me to clarify or repeat anything I had said. I didn’t see how she could have been taking adequate notes.

By the time I was informed over the summer of the findings, a good six months after the incident, I wasn’t at all surprised that the investigator found no violations. Out of it all, I just received some assurance by the hospital administrator that she would work on some additional training for the staff and talk to the doctor about my concerns. Little consolation and just more proof to me that the health care system and government collude to provide inadequate and inhumane care for the people who need quality care the most.

Christmas is tomorrow and as tough as most of this past year has been living with my mom, I find some peace and consolation that she’s physically safe. In the least, I don’t have to spend any sleepless night worrying about where and how she is. It hit freezing temperatures

letterfrommom
A letter my mom wrote pleading with me to let her live with me.

for the first time this winter this past week. Letters my mom would write to me exclaiming how cold it was living in the car and asking to live with me have given way to complaints that the house is too cold at 65 degrees. “We need to watch our heating bill.”, I’ve told my mom just about every day this week. “You haven’t thrown away your jacket, have you?” I said yesterday, jokingly. “If not, put it on.” The Christmas tree definitely brings her some solace, despite the ongoing “spiritual attacks.” It’s the first tree she has had in around ten years and her bedroom is more cozy and better decorated than mine. For me, my blood pressure is the best it has been in years. For these things, we are grateful.

 

 

What To Do When Someone You Know Is in a Mental Health Crisis

In just the last month, I’ve had two friends ask me for advice on getting help/treatment for someone whom was experiencing a psychotic episode. In one of those instances, a friend’s loved one was hospitalized with potential liver failure, after consuming too much aspirin. Just trying to get basic information about what I could do to get help/treatment for my mom, when I first started trying to years ago, was one of my most frustrating and agonizing experiences.

A couple of counselors I paid to see were of little to no help whatsoever. It took phone calls to crisis hotlines and government agencies, and researching mental illness for me to start piecing together some sort of plan towards what I could do to try and get my mom effective treatment. My friends’ experiences convinced me to try and provide some information and a guideline on what to do when someone is experiencing a mental health crisis.

Disclaimer: I’m not a lawyer. My advice is mainly practical and based on vast experience with the current policies and practices of our MH system in California. Residents in others states should still find it helpful, though.

What Is Psychosis? 

A MH crisis very well may occur without psychosis being present. I’m going to focus on situations with psychosis, though, since it’s what I’m most familiar with and what is the most frightening for all involved.

From the National Institute of Mental Health: “The word psychosis is used to describe conditions that affect the mind, where there has been some loss of contact with reality. During a period of psychosis, a person’s thoughts and perceptions are disturbed and the individual may have difficulty understanding what is real and what is not.  Symptoms of psychosis include delusions (false beliefs) and hallucinations (seeing or hearing things that others do not see or hear).

A very common delusion experienced by a person having a psychotic episode is the false belief that someone or something is trying to harm and/or kill them. Hallucinations can take various forms and, when experienced together with delusions, can cause immense distress and potential danger for the person in crisis and people around them. “Can’t you hear them? They’re outside the door! They want to get me! Why don’t you believe me?!” “Those people across the street work for the FBI and are spying on me because of what I know about the government’s plans! Do you work for the FBI too?!” Obviously, a person in such a state of mind should be considered extremely volatile and agitated.

Ideally, the onset of an acute psychotic episode can be discerned before it develops. Here are some warning signs to lookout for: http://www.nami.org/earlypsychosis  For people with a known serious mental illness and history of psychotic episodes, predictors of imminent psychosis include substance abuse and ceasing medication and/or treatment.

Options for Voluntary and Involuntary Treatment and/or Commitment 

Options available to you can vary considerably, depending on the state and/or county you reside in. Recent budget cuts and austerity politics have made an already inadequate MH system pretty pitiful. Nevertheless, it’s essential to know the options available to you, as if it’s one big strategy game, because it is.

Ideally, the person in a MH crisis will be willing to seek help and treatment. This can take the form of just taking the person to a hospital emergency room. Oftentimes, there are immediate medical/physical conditions that need to be stabilized and/or treated anyways, like diabetes or high blood pressure. Or, in more extreme cases, potential organ failure. As soon as possible upon admittance, let the attending staff know, ideally a supervisor, of the person’s MH condition.

If you know the person stopped taking medication for a known mental illness, obviously getting the person to take their psychiatric medication again should be part of the hospital treatment plan. In the event that there isn’t an official diagnosis, but a mental illness is suspected, request an evaluation from the hospital psychiatrist or a mental health clinician. Hospitals want to minimize their costs, especially in this day and age, so don’t be afraid to nudge them quite a bit to do this. Again, it’s all a big strategy game. They typically want to discharge the person as soon as possible, whereas you want them to stabilize and treat the person sufficiently. In the least, they should give information about what MH services are available at the hospital or the county. Ask to speak to the hospital social worker for this information. You may, also, try to get their assistance in finding housing, in the event that the person’s current housing is insecure or non-existent. From board and cares to assisted living situations, there could be options for you and him/her.

When a person is refusing to seek treatment during a MH crisis, an involuntary commitment or hospitalization will be the only recourse. Unfortunately, due to strict civil rights laws and lack of psychiatric hospital beds, it’s exceedingly difficult to do this. Even if you’re successful in getting the person admitted,  it’s likely that the person will be released before they are effectively treated and/or stabilized. There are strategies that can and should be employed to increase the chances for commitment and treatment, however.

In the large majority of states, if not all, at the minimum, in order for someone to be involuntarily committed for a psychiatric hold, he/she needs to be a danger to oneself or other people.  What constitutes being a danger to others is pretty straight forward. A person need to be a violent, physical threat. The chances of this occurring during a psychotic episode are good, especially in the case of someone having persecutory delusions and/or hallucinations. If a person believes someone is trying to hurt and/or kill them, they will understandably try to protect themselves. My small framed mom has hit me in such a state.

Being a danger to oneself means being suicidal, but it also can mean putting oneself in a dangerous situation. For example, a person wandering into a busy street or a diabetic not managing their diabetes properly. There’s some ambiguity here. If not sure, try to ask a county mental health professional before getting authorities involved.

When someone you care about is dealing with a MH crisis, nonetheless, it’s obviously important to make sure you are safe. Stay calm. Don’t argue with the person in crisis. Do your best to assure them they are OK. Keep a safe distance if the person is agitated and angry. As soon as you can, call 911. Make sure you explain to dispatch that it is a psychiatric emergency and request that officers trained in MH crisis interventions and assessments be sent over.

Understandably, many people are reluctant to call the police, due to fear of police brutality, potential racial bias, and the lack of adequate police training in MH crisis responses. An alternative is to call a field clinician team or mobile crisis team. There are many more counties that have police SWAT teams than there are those that have field clinician or mobile crisis teams, though. Call your county’s Behavioral or Mental Health Department, or their crisis hotline, to ask if a MH response team is available.

Be Prepared for a Potential Involuntary Commitment

With someone who has a known serious mental illness and/or a history of psychotic episodes, being prepared is essential. Be sure to do the following:

  • Prepare a document (a “medical/psychiatric information sheet or report”) that includes a list of medications, contact number, relevant legal information and of course any pertinent medical/psychiatric information, such as illnesses/diseases and formal diagnosis. Once hospitalized, the attending physician or staff may not have the time or be able to communicate with you regularly. And don’t assume the doctor or hospital/treatment center is able to access any medical information about the person, via a computer or database system. The document you provide them with, regardless, can provide them with valuable information and save them substantial time. Make sure to keep the document updated with changes.
  • Know the laws and criteria in your state for involuntary commitment: http://www.treatmentadvocacycenter.org/component/content/article/183-in-a-crisis/1596-know-the-laws-in-your-state
  • Don’t be afraid to be assertive or play hardball. The laws around involuntarily hospitalizations are strict and there are various “checks and balances” once a person is admitted. People with serious mental illness are very good at telling police officers and clinicians what they want to hear when being questioned. Don’t be afraid to refute or counter what the person tells authorities. And don’t be afraid to tell the psychiatric staff that you don’t feel safe with the person returning home and that you will hold them legally liable, if anything harmful happens to the person if discharged without adequate treatment first.

The Health Insurance Portability and Accountability Act (HIPPA)

The privacy of an individual’s health information is protected by federal law. The strict interpretation of the law has led to objections by family members that it prevents them from knowing information that is relevant to the welfare of their loved one and safety of their home. There is usually more flexibility when a person’s judgment is grossly impaired, however. The doctor or staff can act in the “best interest” of the person, when their judgment is severely impaired, and give information to a family member and/or friend. I haven’t experienced any real problems getting information or talking to medical staff, when my mom has been involuntarily hospitalized. However, there are plenty of stories of family members being completely shutout, even when their loved one is cycling in and out of acute psychosis for extended periods of time. Get more information on HIPPA here: https://www.nami.org/About-NAMI/NAMI-News/Understanding-What-HIPAA-Means-for-Mental-Illness

 Other Considerations and Options

  • Short of a MH crisis, if the person is willing to receive help and treatment, then there are other options available, such as county outpatient services. The different programs can vary in their level of involvement. People with a serious mental illness should qualify for “intensive services,” programs that involve a treatment team and assertive intervention that can include monitoring and home visitations.
  • More than 46 states have passed what’s commonly called Assisted Outpatient Treatment (AOT). AOT is court ordered outpatient treatment and specifically designed for people with serious mental illness who refuse MH treatment voluntarily.
  • The lack of adequate funding for MH services and psychiatric hospitals/treatment centers has led to jails and prisons becoming the largest psychiatric treatment facilities. Familiarize yourself with what to do if someone you know ends up being arrested during a MH crisis: http://www.treatmentadvocacycenter.org/component/content/article/183-in-a-crisis/2614-understand-criminal-justice-involvement
  • Become an advocate for the person you know who suffers from a mental illness. Educate yourself as much as possible on mental illness, the various treatments and programs available, and the history and nature of our mental healthcare system (The National Alliance for Mental Illness offers education classes for family and friends.). As in the case of what I’ve had to do for my mom for just minimal support, emails and phone calls to and meetings with attorneys, journalists, politicians, along with complaints to state officials, all may need to become a regular part of your arsenal. Pushing for adequate mental healthcare reform is, also, a worthwhile and noble goal.

Slowly But Surely, My Advocacy Work Continues

Most people’s minds, including my own, are on the elections. I’ve been thinking a bit about what the results mean for the future of mental healthcare reform. I’m reminded every day of the inhumane consequences created by my mom not having access to adequate psychiatric treatment. How could I not think about it?

Today, it was at a visit with the neurologist. My mom started crying during a memory test, because she couldn’t answer some of the questions. She doesn’t understand the nature or full extent of her health problems, but she knows she is being unjustly deprived of a better quality of life. So, despite whatever happens politically in our country, I’m in it for the long run. No person, no family, deserves to be so ignored, neglected and abused.

Slowly but surely, I’ve been gaining more attention to my blog and family’s story. Part of this has been done by contacting other bloggers, advocates and advocacy organizations. While I’ve gained support and interest through Facebook and Twitter, I’ve definitely garnered most of my attention through promotion at other blogs and, more recently, joining an actual campaign.

earleyautoI was fortunate enough to have one of my blog posts promoted by well-known mental health advocate and writer Pete Earley. Pete has written a number of books, including two on mental illness. His book, Crazy: A Father’s Search Through America’s Mental Health Madness, is based on his own experience with trying to get psychiatric treatment for his son. I had actually read the book some years ago when I first started trying to get help for my mom. It truly is a fascinating read and remains one of the most valuable resources I’ve come across in learning what my family and I are up against. Pete was also very warm through our communication. He even sent me an autographed copy of his book Crazy. I’d encourage anyone interested in mental health reform to read the book and subscribe to his blog: http://www.peteearley.com/blog/

I also had a blog post promoted by the Treatment Advocacy Center, an organization that specifically focuses on the lack of treatment and programs for those with serious mental illness. More recently, they asked me if I’d participate in a campaign to raise awareness for the need for more psychiatric hospital beds. It wasn’t too difficult a decision for me. I had some concerns about what kind(s) of actual policies, if any, this may lead to them pushing for. I wouldn’t want my family’s story to be used for something I wouldn’t agree with. I figured I could always decide to stop participating, though, down the road if need be. The campaign #ABedInstead was launched last month and I’m happy to be a part of it: http://www.treatmentadvocacycenter.org/what-you-can-do/a-bed-instead

commentsI was quite surprised, actually, by the amount of support and interest my family’s story generated, on Facebook in particular. It received more than 1000 “reactions”, 167 shares and almost 100 comments. The comments provided me with helpful feedback. Overwhelmingly, the comments were religious in content and highly supportive. My mom’s illness takes very religious and cultural forms. Indeed, she has always been a devout Christian. This response definitely makes me think I should touch on more of the religious aspect of her life, and religion and mental illness as a subject matter. It’d be challenging, but it’s worth the try.

Other things I may do is start a YouTube channel where I talk about being an advocate and caregiver for my mother. I might even try writing a book or two. Those articles I’ve been meaning to write on racial/ethnic and class disparity in mental healthcare definitely need to get done first, though.

“The Most Important Election in Our Lifetimes,” But for Whom?

The “most important election of our lifetimes” chorus is at a fever pitch this year, given the top presidential candidates’ very different styles and rhetoric. Is it as important for everyone, however? If recent history is any guide, too many people with serious mental illness (SMI) and their families will continue to grossly and unjustly suffer, regardless of who wins.

1 in 5 Americans live with a mental health issue such as anxiety or obsessive compulsive disorder. Less known, however, is that 4% of the population, 1 in 25 Americans, suffer from a SMI such as bipolar disorder, major depression, or schizophrenia. Of this subgroup, about 40% go untreated. They end up being disproportionately included among the incarcerated or homeless. In fact, about one-third of the homeless suffer from an untreated SMI. Too many others are prematurely lost to suicide.

Part of what makes people with SMI difficult to treat is the nature of their illness. For more than fifteen years now, my mother has been living with a SMI. She suffers from severe persecutory delusions, paranoia, and hallucinations. She believes cameras in the walls and neighbors watch and monitor her, and, at times, that her food, water and the air are poisoned. Daily, she claims that evil spirits are attacking her, causing her both physical and emotional pain.

My family and I have tried desperately to get her help, but nothing has succeeded, not family interventions or meetings with religious clergy, not meetings with counselors or psychiatrists. To her own detriment, she does not believe she is ill. Researchers call this lack of insight “anosognosia.” Approximately, 50% of the people with SMI suffer from it.

And, as the statistics suggest, my mother has experienced extreme hardship. She has gone from being employed, married, and middle-class to being unemployed, divorced, and impoverished. Recently, she experienced a two-year stint of homelessness, living mainly in her car in California’s Central Valley, at which time, both her physical and psychological health greatly deteriorated. Physically, she suffers from diabetes, congestive heart failure and, most recently, kidney failure. She has not always heard voices, but her psychosis has deepened to the point that she now hears voices around 80% of the time.

The government and mental health care system share blame for our plight. Through lack of responsiveness and by design, they have made it exceedingly difficult to get help for my mom. At various times, my sister and I have contacted and met with different county departments and agencies. More than once, for example, we had to badger Adult Protective Services (APS) and the Public Guardian Office (PGO) just to check in on my mom. Ultimately, APS passed the buck to the PGO.

The PGO, in turn, concluded that my mom was competent enough to take care of herself. In the same breath, however, the PGO manager told me that my mom needed to be involuntarily psychiatrically hospitalized and treated! PGOs can and do take responsibility for the care and housing of people with mental illness. This was the manager’s way of telling me they did not want responsibility for someone who was not stable and adherent to psychiatric treatment. Like the APS, the PGO was washing its hands.

Sure enough, my mom has been involuntarily hospitalized, what in California legal terminology is called a “51/50 hold.” Altogether, she has been 51/50ed six times for putting herself in danger, two times in San Francisco (more liberal), two times in Fresno, and two times in Bakersfield (both more conservative). Each time, however, my mom was released in under 24 hours without even being psychiatrically treated, ostensibly for no longer meeting the “legal threshold” of endangerment, but also unquestionably because of a lack of psychiatric hospital beds.

The stats bear this out. Not unlike other areas of health care, for decades, deep cuts have been the trend. According to the Treatment Advocacy Center, nationally, we now have 11.7 psychiatric beds per 100,000 people, as compared with 337 beds per 100,000 people in 1955. In California, according to the California Hospital Association, the number of psychiatric beds available statewide decreased by 2,700 — or nearly 30% — from 1995 to 2013, while the state’s population grew 20%!

Why? Part of it is because mental health funds are being improperly diverted. In California, the money legislatively intended for people with SMI is going into programs and services that are not accessible to or effective for people with SMI. In fact, recently, the State Auditor found that mental health money and outcomes are not being adequately monitored.

There is also a bipartisan consensus on continuing to close psychiatric hospitals and under-resource those that remain open to reduce public spending, in the name of “fiscal responsibility.” Ronald Reagan may have initiated the closing of psychiatric hospitals, but plenty of Democrats, including President Obama and California Governor Jerry Brown, are continuing what he started.

To her credit, Hilary Clinton recently released a promising mental health plan. It calls for decriminalizing mental illness and supportive housing, among other things. There is virtually no mention, however, of the lack of quality psychiatric hospitals or treatment programs that could help people with SMI— As if it is not even up for discussion. There is, also, no mention of support for a congressional bill (H.R.2646), which attempts to partially address these problems. Donald Trump has not made mental health care reform a priority at all, but Clinton as of yet has not shown a true appreciation of the scale of the problem.

Sure, it is easy enough to say that Clinton’s plan provides at least a basis for improving our mental health care system. As a political scientist, I understand politics is the art of compromise. I also know, though, that health care insurance companies hold too much sway and politicians, of both parties, are more responsive to Big Business and the affluent, rather than the indigent, old, and disabled, their rhetoric and policy statements aside. I have, after all, contacted various political representatives to try and get help. Some inquiries have been made reluctantly on my behalf when dealing with slow and/or incompetent agencies/departments, but not any one of them has ever asked me what kind of policies or programs could help my mother.

Instead of waiting for enough help from the system, I took a leave from my job to try to take care of my mom. I moved her in with me this past February. At the time, she was living in a hotel. Her health is frail and I worry she does not have much more time to live. She, and others like her, deserve access to quality hospitals with well-trained, and culturally responsive doctors and staff. We look forward to the election results, like most of the country. But regardless of the outcome, we will continue to live day to day just trying to survive in a society that is, in many ways, “mad” and needs healing and treatment, too.

Violence and Serious Mental Illness: What’s to Hide?

My dad came to visit my mom and I for a couple of days this past week and I used some of the time for respite from care-taking duties. I went to go see Suicide Squad, a movie based on the DC comic book franchise. The squad is basically a team of super criminals. One of the super criminals is the character Harley Quinn, who in the movie is the girlfriend of a homicidal maniac, the Joker, the character of Batman comic book fame. Like the Joker, Quinn is also an immensely violent, psychotic killer. Her weapons of choice include a colorful, personalized baseball bat which she uses to bludgeon people to death.

quinnbat
Margot Robbie as Harley Quinn in the movie Suicide Squad.

As the movie demonstrates, there is little question that Hollywood, as with much of our pop culture, demonizes people with serious mental illness (SMI), particularly people with schizophrenia. In the movie, Quinn openly admits to hearing voices and experiencing other hallucinations. She exhibits some endearing qualities, like loyalty to her friends, but fully embraces and relishes in her homicidal and criminal urges.

As any mental health advocate would quickly point out, however, these portrayals are highly unfair and misleading. That fact is that most people with serious mental illness are much more likely to be victims of violence, vulnerable as they are to homelessness and compromised physical and psychological health. Theft and assault are the most common crimes committed against people with schizophrenia.  For women with schizophrenia, rape is a constant danger (1). This demonizing of people with serious mental illness undeniably contributes to the gross discrimination and victimization people with SMI experience in their daily lives, whether by other people or at the hands of the government.

To help combat this prejudice and stigma, mental health advocacy organizations, like the National Alliance on Mental Illness (NAMI), spend millions of dollars on educational programs and public relations campaigns. Indeed, I personally benefited from attending a NAMI family-to-family educational program when I first started trying to get help for my mom years ago. Learning about the different types and symptoms of mental illness and hearing the stories of other family members helped me develop immense insight and compassion for people with SMI and their families, including my own.

Not only does my mom have a SMI, but she has multiple brothers and sisters that lived or are living with SMI too. One of my few memories, as a child, of my schizophrenic aunt is of her having a violent outburst during a family gathering. She attacked my uncle and left a large, bloody scratch near his eye. My sister and I, terrified, huddled in the corner behind the living room couch, while the adults tried to restrain her until the police arrived.

Another time my aunt, without warning, hit her mom, my grandma, over the nose with a glass ashtray. Needless to say, I grew up afraid of my poor afflicted aunt. And for quite some time, I was also in denial of what kind of SMI my mom had. Initially, when trying to help my mom receive treatment and care, I thought she was perhaps bipolar. “She can’t be schizophrenic,” I’d say to myself.  “Schizophrenics are horribly deranged.” Slowly but surely, and through the course of dealing with much personal grief, I’ve come to accept that symptoms of schizophrenia were expressing themselves in my mom too. Hearing her talk to herself for the first time was absolutely heartbreaking. She mimicked the demon I came to think of my aunt as in my youth. She was the demented monster or “Psycho” in so much Hollywood movie lore. (My mom has been diagnosed with schizoaffective disorder.)

Fortunately for my family, my mom has never expressed the level of violence my aunt did. She yells and curses often times, but mainly to the voices tormenting her. She gets angry at me, of course, but manages to not swear at me or try and physically hurt me, to my surprise and relief. That’s not to say she hasn’t ever physically assaulted me, or sworn at me though, because she has.

Years ago when living with me in San Francisco, my mom punched me in the stomach one day when I stepped in front of her to prevent her from walking away from our apartment. A police officer was on the way to take her to General Hospital for a 51/50 hold. She was in an acute episode that morning and angry and hostile, claiming the people who were dropping off their children for school across the street were spying on her. As she turned around to go back into the apartment, she coldly said to me, “I’m going to fuck you up when I return [from the hospital].”

Fortunately, for us both, my mom is significantly less hostile and belligerent towards me than she used to be, even though her psychosis is more of a constant. Sometimes I wonder, though, if I should be more guarded. Maybe I should lock my bedroom door at night when she’s in an acute episode, like I sometimes used to. As a trained social scientist, I like to rely on evidence and research to inform my opinions. But the research on the connection between SMI and violence is woefully inadequate. Indeed, not much on it exists at all.

In a recent blog on the subject, well-known mental health advocate and journalist Pete Earley says, “Because of stigma, we always begin every conversation about violence by explaining that individuals with mental illnesses are no more violent than the general public and, in fact, are more likely to become victims than perpetrators” (2.) He’s talking about MH advocates and reformers, but the same can perhaps be said for researchers and/or academics. After all, they can be closely aligned with or dependent on advocacy organizations, like NAMI, that are reluctant to talk about violence committed by the mentally ill. Instead, they prefer to focus on positivity and recovery.

The fact of the matter is, however, that many people with SMI languish without successful treatment for years, if not for their whole lives. For many that suffer from persecutory paranoia and delusions (i.e. the belief that people or some kind of entities are out to get them), it’s likely they will violently lash out during a time of acute psychosis through physical force. (In their minds, they are defending themselves.)  When my mom punched me in my stomach and verbally threatened me, I know it was because she believed an evil spirit was controlling me or possessing me. My mom’s illness takes a very cultural and religious based form.

With respect to the sparse literature, much of it fails to illuminate the subject matter. One study published in an academic psychology journal in 2014 shows a relatively weak connection between violence and people with SMI. One thing of particular interest is the following, though; of the 429 crimes committed by 143 offenders with three major types of mental illness, researchers found that 3 percent of their crimes were directly related to symptoms of major depression, 4 percent to symptoms of schizophrenia disorders and 10 percent to symptoms of bipolar disorder. To me, this is interesting because it challenges my preconception that schizophrenics are among the most likely to commit crimes and/or violent acts. As the authors admit, though, there are some problems with the study’s methodology that need to be improved (3).

Just this past month, however, a recent study was published by the Treatment Advocacy Center that specifically focuses on family homicides committed by people with SMI. The study is persuasive and innovative, in that it uses national data provided by the Federal Bureau of Investigation (FBI), Center for Disease Control (CDC) and numerous media reports. In essence, it extrapolates media reports on family homicides committed by people to SMI onto national homicide data. It’s arguable that the data underreports the connection or numbers, since, for one, many homicides committed by people with SMI probably go unreported by the press. Nonetheless, the data shows that people with SMI do commit murders at higher rates than the general population.

According to the report, there were approximately 4000 family homicides committed in 2013. The number of family homicides associated with SMI was 1150. This was 29% of all family homicides and 7% of all homicides in 2013. People with SMI make up approximately 4% of the US population any given year. Thus, they obviously accounted for a disproportionate percentage of family homicides and total homicides nationwide. Other things of note in the study are the specific family relationships and comparison to changes in the national homicide figures (4).

The majority of homicides involving parents and their children were committed by people with SMI. In addition, around 67% of parents killed by children were killed by children with SMI. Around 50% of the children killed by parents were killed by parents with SMI.  And although homicide rates in the US have decreased in recent years, there has been virtually no decrease in the number of children with SMI killing parents or parents with SMI killing children (4).

As in the high profile cases that have rocked national attention recently, most of the people with SMI who commit murders are receiving inadequate or no psychiatric treatment. And in many instances, violent acts committed by people with SMI are preceded with warning signs such as obvious psychotic symptoms (e.g. severe hallucinations) and verbal threats. Key indicators also include abuse of drugs and/or alcohol and past acts of violence. While it can be difficult to distinguish which factor is more influential (Is it the abuse of drugs or not taking psychiatric medication that plays a bigger role?),  not taking effective medication no doubt increases the chance for violence, regardless of an individual’s personality traits and/or circumstances.

homeless-chicagoWe undoubtedly need more and better studies on the connection between violence and SMI, in order to better inform our policy and political decisions and change the way we as a society think about mental illness. Ignorance and fear leads to stigma, and the reality is that people with SMI and their families need more compassion and access to MH treatment and services than what is currently being provided. Violence, after all, takes various forms. Leaving people alone to suffer from their hallucinations and delusions is a form of violence. Leaving family members alone to deal with and try to help them is also violence, a psychological torture really. As long as this situation is allowed to continue, then nobody’s hands are truly clean.

Footnotes:

  1. Torrey, E. Fuller, Surviving Schizophrenia (New York: Collins, 2006), 287-289.
  2. http://www.peteearley.com/2016/06/23/violence-and-mental-illness-an-uncomfortable-subject-but-a-grim-reality-for-some-families/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+peteearley+%28The+Official+Blog+of+Author+Pete+Earley%29
  3. As the authors mention, the sample size is small and the number of violent crimes are probably underreported. http://www.apa.org/pubs/journals/releases/lhb-0000075.pdf
  4. Torrey, E. Fuller and others, Raising Cain: The Role of Serious Mental Illness in Family Homicides (Treatment Advocacy Center, June 2016) http://www.treatmentadvocacycenter.org/storage/documents/raising-cain.pdf