One Journey Ended, Another One Begins

Since my mom passed away 5 months ago, I readily admit that I’m experiencing an existential crisis. My mom needlessly suffered a long time. Going back to when more obvious signs of her serious mental illness (SMI) began showing in ’03, we are talking at least 15 years.

IMG_2497
As my mom’s health worsened, I’d have to check in on her when she was sleeping more frequently.

My family and I had to helplessly watch her suffer too. For me specifically, I watched her suffer every day the last two years that she lived with me. Not a day went by that I didn’t deeply worry she could die or slip into a coma, so grave was her physical condition. Her psychiatric condition was such that I had to watch my mom live in daily distress. She was a prisoner to her delusions and hallucinations.

Her 8 days in hospice went well enough, all things considered. But for us, specifically our relationship, there was no real closure. You see, we couldn’t tell my mom she was coming home from the hospital to die. She didn’t want to die.

I nervously made conversation with her when she arrived back at the house from the hospital. It was difficult to find the right words. It usually was, talking to mom.

Me: “They [the hospice] came suddenly for you, huh?”

Mom: “Yeeaaa,” she replied disapprovingly.

Me: “No more hospitals?”

Her: “I hope not,” she said dejectedly. She loathed hospitals and was very tired and weak, after stopping dialysis.

Me: “OK,” I said. I didn’t tell her my full thoughts, though. “OK mom…no more hospitals.”

My counselor says I’m doing surprisingly well. I attribute it to my family’s strength and fortitude, particularly my mom’s. What a fighter she was! I, also, attribute it to the grieving and heartache I experienced all those years prior to my mom moving in, though.

The first year of the two she’d spend homeless living in a car, for instance, was probably my lowest point. Getting through that intact helped me weather future storms.

Still, I know my ability to find adequate peace and happiness, moving forward, will largely depend on my ability to understand my mom’s suffering in a way that provides me comfort and mitigates my deep anger and sadness. This is largely a spiritual inquiry, I realize

I don’t really know where to begin, though. I’m not religious in the Christian sense, at least not anymore. My mom loved the Lord and she instilled her love and understanding of the bible’s teachings to me and my sister from an early age. Going to college, as it can do to people, made me more secular, though.

There was a time in my early twenties that I considered myself an atheist, in fact. As time went on and I reached my late twenties and early thirties, I became more agnostic. I don’t doubt part of that change occurred from the heartache I endured, seeing my mom’s initial onset and then condition deteriorate over time.

UeshibaPrayer
Ueshiba praying and giving reverence to nature and the divine.

I’d gravitate a bit towards Buddhism, mostly through my training in Aikido, a martial art. The founder of Aikido, Morihei Ueshiba, consciously developed Aikido as a physical embodiment of his spiritual views and principles. He specifically adhered to Shintoism, an ancient Japanese religion. By the time Ueshiba began practicing it, though, it was heavily influenced by Buddhism. There are definite similarities.

Like Shintoism, there are many deities and prayer rituals in Buddhism. My interests, though, are in cultivating certain principles and “states of being” valued in Buddhist philosophy such as empathy, peace and harmony with others and the environment, and being in touch with the present/one’s surroundings. I’ve found developing these very useful in helping me deal with immense stress and anxiety.

Indeed, I believe both my Aikido training and study of Buddhism helped me become more aware of my internal emotional processes. This allowed me to better mitigate my pain and fear, my depression essentially, through the years, especially during the time period when my mom was homeless.

This isn’t to say I didn’t ever pray or show reverence to Christian tenets and practices. I prayed with and for my mom. I even visited a Catholic priest with my aunt years ago to get insight as to what was happening to my mom. He assured us that it wasn’t demonic possession (I already figured as much.).

This continued when my mom moved in with me in February ’16. When I prayed, though I may have said the word “God,” I didn’t really pray to the Western, biblical one. To the extent I was praying to something at all, it was to the universe or to my ancestors. I prayed at times to my grandma, my mom’s mom, to help us in some way, too. I essentially prayed to anything that could and would help. It didn’t seem like anything was listening, though, at least at the time.

Now that my mom is gone, I’m trying to remain as open as possible to the spiritual possibilities and facets of life. Admittedly, I contemplate from time to time that there may very well not be anything greater than the physical world and, maybe someday, I’ll draw that conclusion. But right now, for me to accept that entirely would lead to the most cynical and depressing states of mind.

Fortunately, my perception has, also, changed already,  in a way that allows me to see things anew. I truly believe my mind and senses are the clearest they have been in years. This has made some of the journey a bit more painful, as the depths of my mom’s suffering are easier to see and feel. But it has also helped me see and appreciate certain events as something greater than mere coincidences. In other words, as assurances from the universe, and even maybe my mom, that things are going to be OK and that I do have help. I wasn’t able to see this before.

To share just one example: After some mulling, I decided to buy the cemetery plot next to my mom. While we buried her in the same cemetery as her parents, she’s immediately surrounded by strangers. I didn’t feel comfortable with that, ultimately.

I didn’t realize it right away, but the account number I was assigned for my plot is “5150.” I couldn’t believe it when I noticed it on the paperwork, while sitting at my office desk at home that day. It’s not an exaggeration to say that that sequence of numbers fully characterizes the nature of our relationship for the last 10 years. 5150 is the California legal code for involuntary hospitalizations and something I would try to have done to my mom multiple times, in the hope she would be stabilized.

If my mom was trying to send me a message, that would be a way she’d do it. She had a sharp sense of humor and was definitely blunt when she needed to be. When I saw the numbers, I just smiled, shook my head and said, “OK mom. Good one.” I didn’t feel like she’d be mad at me, though she’d despise me trying to hospitalize her, while she was alive.

After all, she used to like to tell me that someday the “truth will set me free.” She’d say it in reference to her delusions and hallucinations. They took a very religious form. When I’d get frustrated, I’d sometimes throw it back at her. “The truth will set you free, mom.” I can only hope that she would know and accept the truth now.

To touch on some science, I know the mind can see what it wants to see. But events like this one seem too improbable to accept as just coincidences. And I know one thing is absolutely certain. That things like this, patterns or connections between events and my family’s history, didn’t happen before my mom passed. If they did, my mind and heart weren’t open to them. The suffering and depression were too great. An event like that above, I’d just as likely interpret as more “bad luck.”

That was confirmed as much by a Buddhist counselor that spoke on trauma at a recent meditation workshop. He said that people need adequate breathing space and refuge, in order to cultivate their minds, bodies and spirits. He’d go on to say that people who are in life and death circumstances, especially those who have developed trauma, have a much harder time cultivating the calmness and clarity (i.e. being present) necessary to make and feel connection with people and the world/universe around them.

IMG_0072
The center piece to my family altar. My family’s ethnic and racial heritage and history are themes.

Heck, when I think about things in hindsight sometimes, I now see that, as hard as things were, things worked out OK for us in many ways.  There’s also the “coincidence” that my mom nearly passed away exactly two years after she moved in with me. It was like the universe or God was saying, “I’m or we are watching and with you.” That was confirmed recently by the pastor of a local church my mom and I attended. In assuring me that my mama was looked after, even through her sickness, Pastor Lyn said, “Jesus is behind us, beside us and in front of us through our trials.”

Whatever the “truth” is, I’m grateful I’m finding some solace in things I’ve experienced and seeing things anew. Little rituals, like honoring a family altar I put up in my living room, help too. I don’t know where this path I’m on will end. But I do know that as long as I let my love for my family and principles, like justice for the poor and misfortunate, guide me, things should workout. I got through the worse of it, after all, OK.  I’m pretty sure both Jesus and Buddha would agree.

Mama Isn’t Here Anymore, But She Is Still with Me

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.

IMG_2715Last 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.

IMG_2673I 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.

IMG_2669
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.

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

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

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

IMG_2618
My mom at around eleven years old

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

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

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

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

IMG_2640
My mama with my sister and me.

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

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

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

IMG_2157
My mom and me at my graduation from U.C. Berkeley.

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

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

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

IMG_2479
Mom and me visiting Monterey, CA in Dec. ’17.

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

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

28783368_1906526199359606_5814926190774121318_n
Mama was laid to rest wearing her favorite peach dress and white sweater and the necklace I bought her for Christmas.

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

The Medicines Are Poison Again

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.

IMG_2488
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.

My Mom Is Homeless and Cries for Help from Her Family, The Government Ignores Our Pleas

(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.

227667_1037677981327_3352_n
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.

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

IMG_2157
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.)