I am hardly posting on my blog, for different reasons. One, work keeps me plenty busy. But I, also, am having a hard time balancing my advocacy, work and personal hobbies. That said, I will be sharing some news about a recent public event I participated in in Modesto, CA. It was the first time my film, “Benevolent Neglect”, was shown in a theatre!
With this post, I’d like to share some important personal news. After an intense amount of training this past year, I was able to finally receive my Black Belt in Aikido. I started training 14 years ago, around the time I first started trying to get help and treatment for my mom. Needless to say, dealing with my mom’s longterm medical crisis and housing insecurity derailed and delayed my training. I started training regularly again in 2019, but then the Pandemic hit! Well, I finally persevered and I know my mom would be very proud of me!
Here’s a video I made of my personal journey in Aikido. I incorporate the personal journey with my mom a little bit.
I’ve decided to try and convert this blog to a promotional page for my film, Benevolent Neglect. Having a website for my film is one of those marketing aspects I haven’t been able to create yet, given I’m a one person operation and my regular “day job” keeps me way too busy. I’m content with the positive responses my film is garnering, but I know it has the potential to attract a bigger audience. That’s the only way any politicians are going to take it seriously, I figure. I’ve sent it to officials to watch, but haven’t received any response or feedback from them. Typical, I know. In the least, it will give me something productive to do when I feel my advocacy is fruitless. I’m not sure what it’s going to look like yet, but I still plan on blogging on occasion, once it’s converted.
In the meantime, here are some short videos I took when I went to visit my mom at the cemetery on Mother’s Day. I was feeling somewhat creative and wanted to give a more personal feel for what it’s like when I’m there. I’ll usually stop by on my way to Fresno and then, again, on my way back to the Bay Area. The first video is the Friday, two days before Mother’s Day.The second video is on actual Mother’s Day. A mariachi band greeted me as I arrived. It was lovely.
It was the third Mother’s Day without my mom. I would normally take her to Marie Callender’s, her restaurant of choice for the occasion. I turned 45 years old this year. I should still have my mother.
It has been a little more than three months since my mom passed away. Sadly, her scent is virtually gone from her room, but I am doing the best I can to honor and cherish her memory. Indeed, this is a central part of my healing process.
I try to visit her grave weekly in Madera. I’ll usually stop there for around thirty minutes, while on my way to visit my dad in Fresno. On special occasions, like Mother’s Day, I’ve stayed for more than an hour.
Last Friday, June 1st, was her birthday. Mama would’ve been 67 years old. For the occasion, I dressed up and took her a dozen red roses. She loved roses. Unfortunately, she wasn’t able to enjoy them for around the last ten years of her life. She, in fact, didn’t want any roses or plants near her because she thought that toxins could enter her body through them.
That’s what my mom’s untreated serious mental illness made life like for her. She literally couldn’t stop to smell the roses. Every day for her was a struggle. Seeing her suffer and deteriorate was a living nightmare for me.
One of the first things I did after my mom passed was throw out all her medicines. At any given time, my mom was taking around ten different ones for her various serious conditions. She was prescribed dozens of different ones in recent years. This includes “anti-psychotic” drugs like Zyprexa and Risperdal, but she never stayed on those long enough for them to have any effect on her.
The Risperdal was, ironically, prescribed to her during one of her last hospitalizations in January. They had never bothered to try and treat her SMI before when she was hospitalized. Predictably, she refused to take it after the first dosage because it made her feel drowsy.
I actually told the hospital staff to not give or prescribe it to her. What was the point? Why prescribe her psychiatric medicine without her being under the active care of a psychiatrist? The hospital didn’t even bother giving us information as to how to find one. They prescribed it anyways. It was waiting for me the next time I went to the pharmacy. Money, money, money! The game is rigged in the favor of the pharmaceutical companies.
Anything left from her week in hospice I threw out immediately too. My house and her room are going to be a sanctuary of peace and good health only. I returned pictures she had placed in plastic bags and drawers to keep safe from “being stolen” to their original locations. I placed her personal possessions, like her Bible, to prominent places on her dressers and book shelves. I bought a house plant for her corner table because I want something alive and beautiful to be in there.
These rituals and acts seem to be helping me. The feelings of guilt, which experts say are inevitable, are subsiding. Increasing my physical activity, reconnecting with extended family and attending counseling are all helping too. My trauma counselor told me yesterday that it was like I was in a war and I was the medic, the frontline and the commander all at the same time. I know it’s going to take great effort and time to calm down from that and sort things out.
An art piece I bought and placed in mama’s room.
He also said that I’m doing really well. I like to think it’s because I have my mom’s fortitude. She was so strong. Her faith never wavered! I, also, like to think that I have her guidance now. I’m asking her for it every day.
My world has been turned upside down. I’m starting a journey without the constant anxiety and fear of what may happen any minute to my mama. That struggle went on for at least fifteen years. I know she’d want me to do what makes me happy. I’m trying, mama.
A little more than two days ago, on Sunday afternoon, my mom stopped taking her medicines. She told me the “Holy Spirit” told her to stop taking them because they were making her ill. She is insisting that she start taking herbs instead, referencing Ezekiel from the Bible.
Ezekiel 47:12 “And the fruit thereof shall be for meat, and the leaf thereof for medicine.”
I can’t say I’m surprised. My mom has stopped taking her medicines numerous times in the past, the last time being in February of last year. Then, it took merely 24hrs for her blood pressure to increase to over 200 and for her to start experiencing breathing complications from her congestive heart failure.
This time, her decision to stop taking her meds was more gradual. In recent weeks. she has been increasingly complaining about the medicines and, in fact, stopped taking one of her blood pressure medications around a week ago. In the last few months, she has also increasingly refused various treatments. She refused to treat her anemia (She didn’t like the weekly shots.) and refused to start prep for dialysis, despite reaching kidney failure stage. As of three weeks ago, her last appointment with her kidney doctor, her kidney function was at 13%.
Given her history, I saw a few different scenarios playing out the last few weeks, this being one of them. I know it’s exceedingly difficult for my mother to be confined to the house. It makes it too easy for her to withdraw into the prison of her mind. So I was hoping a short trip to one of her favorite vacation spots, Monterey, CA, would help improve her spirits and make her more cooperative for at least a little while, but no.
The first day went well enough. But during the evening, she woke up a few different times in the hotel room to conduct “spiritual warfare.” Upon returning Saturday, she slept well enough that night. She was tired from walking around the wharf that late morning. But after eating breakfast and taking her meds on Sunday morning, she returned to her usual fixation with the voices. After a couple of hours of intense conversation with herself, she came out of her room to announce to me what the “Holy Spirit” had told her.
[Me and mom having a conversation on Monday. Her BP hasn’t been over 200 since.]
For now, her heart rate is fluctuating a bit and her breathing seems OK. And although I know not to take her at face value, she says she’s not experiencing any pain anywhere. I’ve had my sister, a family friend and my aunt all talk to her about taking her meds to no avail. I’ve called her heart doctor and the county mental health crisis line to get some information and advice. The doctor said, predictably, to call social services and the crisis hotline operator said, also predictably, that I can call 9/11 if I need to.
Lighting a candle for my mama and asking people on social media to pray for us.
I know the drill already, though. Emergency personnel can try to talk her into going to the hospital, but if she refuses, unless they see her as a clear danger to herself, they aren’t going to make her go. At some point, her blood pressure and/or glucose will get dangerous highly and I’ll have more leverage to request/demand they hospitalize her. I will probably make the call sometime Wednesday afternoon.
I’m of course very stressed out and worried about my mom. I frankly don’t think she will survive another hospitalization. The last two times she has been hospitalized, she never recovered to where she was prior to that. And I worry about the possibility of her becoming incapacitated in some way, leaving me to decide her fate. I don’t want that choice. I shouldn’t have to make that choice. My mom should have been given a chance at recovering and rebuilding her life years ago.
(Originally published in August of 2010. It was the beginning of dealing w/persistent government neglect towards my mom. Knowing what I know now, my mom should have met criteria for what is considered “gravely disabled” and been taken in for mental health treatment, not just at this time, but countless others since.]
On Thursday night, exhausted and hungry, my mother began to cry and plead with two of my cousins: “I’m tired of this. I’m tired of all of this. I don’t want to live like this anymore. I have nothing.”
These break downs happen often. While she shows tremendous courage and endurance in living her life with an untreated serious mental illness, at times of distress, she breaks down and cries, saying that she doesn’t want to live estranged from her family. Needless to say, it is heartbreaking for me and my family to see and hear my mother when she is distraught like this.
For a week, my mother and uncle were homeless AND without a car in Bakersfield. My uncle had driven them both down to Bakersfield from Fresno last Thursday. Driving back and forth between Bakersfield and Fresno has become routine for them these last few months. They do it when my mother feels Fresno is particularly unsafe, i.e. when the “enemy is out to get them.” They will drive around for hours, or even days, and will sleep in their car.
Sometime the following evening, though, my mom was pulled over by the police while driving. For all I know, my uncle just let her drive because she wanted to or because he was tired and asleep in the backseat. Whatever the reason, letting my mother have access to the keys was foolish because my mother has a suspended license and the police impounded the vehicle.
They stayed in Bakersfield for a week trying to get their car back. For a couple of days and nights, members of my extended family put them up in a hotel. That was all my extended family could do for them, though. Like my sister and me, it is too difficult for my cousins to be around my mother, especially since they have young kids. My mom has scared their kids before, believing as she does that there are people and evil spirits around her and trying to cause her grave harm. So, for the other five nights, instead of going to a homeless shelter like my cousins and I suggested, my uncle and mom elected to sleep in another uncle’s car.
Come this past Thursday evening, they were both worn out. According to my cousins, my mom was so tired and hungry, that she looked like she was going to pass out. I can only imagine what her glucose level might be. She admitted to me on the phone earlier that day that she is out of one of her diabetic medications.
My sister and I made phone calls throughout the week to Adult Protective Services (APS) and the police to try and get them to do a welfare check on my mother and, if possible, to connect her with temporary housing. APS and the police were unable or unwilling to do anything, though, because we couldn’t tell them with any certainty where my mother was going to be at any given time. We knew my mom and uncle were at the courthouse during the day, but APS told us they only go to actual residencies and a rude police operator told me that the police aren’t going to waste their time by looking for someone in a courthouse.
My mom and I in 2008 at a family celebration.
Well, as of today, the 28th, my mom and uncle are back in Fresno. My sister and I are hoping that we can get Fresno APS to visit my mom. This is not a sure thing, however, because Fresno APS has been uncooperative. They have been refusing to check in on my mom the last two months, even though we have told them that she is regularly sleeping in the car and had been evicted from her apartment. Fresno APS sent an investigator to my mom’s residence three months ago and found signs of neglect, but since that time has been saying that, due to my mom having a conservator, checking in on my mom’s condition and welfare is the probate court’s responsibility. (The probate court is the court that handles conservatorship issues.)
Because of this bureaucratic negligence and indifference, my sister and I have missed work and spent the last two days meeting with and talking to people at different agencies about what’s going on. My sister was able to talk to a supervisor at the investigation department of the probate court and was told, predictably, it was APS’s responsibility. Talk about passing the buck! With that information in hand, I called the Deputy Director in charge of APS and told them what I had been told.
Finally, around 4:30pm on Friday, I received a call from Bea, a supervisor at Fresno APS, who said that she was going to reopen my mom’s case and send someone to visit my mom sometime this next week. My sister and I are not holding our breath, though. We know by now to not get our hopes up in relying on the government for meaningful help. We won’t be surprised if they find an excuse not to visit my mom at all. Even if they do pay her a visit, we know they probably won’t do anything. It’s pretty simple. They should find some shelter for my mom, hospitalize her if they have to and physically separate her from her brother, since he is neglecting and enabling her. We all damn well know that if she was wealthy and/or famous, it would not be this hard to get her help.
It’s time to end this post now. I need to return my ailing mother’s phone call. She is sounding really tired and weak.
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
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.
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.
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.)
Last Friday, June 1st, was her birthday. Mama would’ve been 67 years old. For the occasion, I dressed up and took her a dozen red roses. She loved roses. Unfortunately, she wasn’t able to enjoy them for around the last ten years of her life. She, in fact, didn’t want any roses or plants near her because she thought that toxins could enter her body through them.
I actually told the hospital staff to not give or prescribe it to her. What was the point? Why prescribe her psychiatric medicine without her being under the active care of a psychiatrist? The hospital didn’t even bother giving us information as to how to find one. They prescribed it anyways. It was waiting for me the next time I went to the pharmacy. Money, money, money! The game is rigged in the favor of the pharmaceutical companies.
benevolent neglect 