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.  

Logan:X
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