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.)