Benevolent Neglect as a Short Documentary

I haven’t been posting because I’m working on a video project, while on my sabbatical from teaching. For my followers and visitors, yes, this project is a new phase in my advocacy work for my family. It’s a short documentary on my family’s experience with the mental healthcare system.

As those things go, costs accrue, related to production and planning. They’re relatively low, since I’m doing this project as an “amateur,” someone who has no formal training and experience with filmmaking. It’s something I feel compelled to do, though, and feel pretty good about the prospects of completing something valuable and important. If you could take the time to considering donating to my fundraising campaign for the film and sharing it with people you know, I’d greatly appreciate it. Here’s the link to the Kickstarter campaign (click on “campaign”).

Below is a snippet from the campaign website, followed by a short video segment of an interview I’ve already done with a family friend. Thank you for your consideration and help!

“This short documentary is my latest attempt at advocating and seeking justice for my mom and family. I have no formal filmmaking training or experience, but am determined enough to make something meaningful and impactful. I’ll be incorporating a significant amount of my own knowledge, experience and research in the film…

I’ve, also, been lucky enough, through making connections, to make plans to interview people who have worked on the “inside” of the mental healthcare system. One person used to work on a community mental health crisis team and another was a doctor in a psychiatric emergency room. I’ll be using my training as a Political Scientist to include a Politics of Mental Healthcare section in the film, as well.”

I’m a Former Caretaker and The Joker Movie Is Pretty Right On About Society

As a former caretaker, The Joker movie hit me in a raw way. I think the movie accurately portrays how society mistreats the poor and people with serious mental illness (SMI). I saw this, firsthand, in trying to help and take care of my mom, who struggled with schizoaffective disorder.

My mom wasn’t able to take care of herself adequately. She, in fact, had been suffering mightily and deteriorating for years. I couldn’t take it anymore. She deserved to live with a semblance of dignity.

When I started taking care of her full-time, we didn’t have a lot of family around and I didn’t have a lot of money saved up from my teaching job. So, my mom and I were pretty isolated socially and very reliant on the government for her healthcare and welfare needs.

I was able to stabilize her medically (physically) enough and keep her safe for two years, but society made it exceedingly difficult, in every respect, for me to do so. As it was, it never provided us with sufficient help and respect, since the onset of her SMI. My mom needlessly suffered for more than a decade. She would never be treated for her SMI and stabilized. She was discarded. We were discarded.

“They don’t care about people like you, Arthur.”

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Arthur Fleck doing his best to survive.

Those were the words spoken to Arthur Fleck by his government social worker (SW). She was referring to the policy makers (officials) who decided to close her office and, thus, cut Arthur off from his psychiatric meds. But as was clear in their interactions, even the SW didn’t seem to care all that much about Arthur’s struggle. As Arthur stated moments before she told him the news, “You never really listen to me.” He’s of course saying she doesn’t really care about him.

This was all too common an experience in trying to access MH services for my mom. For example, there was the time when an intake worker/clinician at a county Behavioral Health Department, in flagrant violation of county policy and state law, outright denied my mom MH services, because my mom, like many people with SMI, denied having a SMI!

The worker was cold and impersonal from the minute we met. I remember saying, angrily, on my way out of the interview/assessment, “I’m waiting outside, mama. All she’s doing at this point is filling out information so they can get their money for seeing you from Medi-Cal.”

There was the time when a hospital nurse and supervisor unsafely discharged my mom against my wishes. My mom was clearly in a psychotic state and unable to make a competent decision about her own care. My mom didn’t even believe she was in a hospital.

Despite this and her physical condition being fragile (She would be treated for sepsis and was just two days removed from a ventilator.), hospital staff would wheel her to a cab. They couldn’t even be bothered to do a psychiatric evaluation to see if she fit involuntary hold criteria.

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My mom didn’t like hospitals. I can’t blame her.

This incident was an extreme example, but our experiences with various hospitals taught me they don’t give a shit about people with SMI. Whenever my mom started to become non-compliant, due to her psychosis, staff would become less attentive and they’d begin preparing her for discharge, even if she wasn’t medically stable.

And this is what they were willing to do regularly in front of me. I can only imagine what they did all those times I wasn’t with her before she lived with me!

“Is it just me or is it getting crazier out there?”

That’s what Arthur asked his social worker during one of their sessions. She responded by saying, “It’s tough times. People are struggling with no work.”

Her comment is a reference to the larger political and economic situation the movie is based in. It’s a pretty subtle backdrop, but the movie itself starts with a radio report of a pitched labor battle, a garbage strike, to help make that very point.

It lasts weeks and leads to increasing piles of garbage on city and neighborhood streets. Tensions build and, eventually, protests breakout at what’s clearly deep frustration with economic inequality and uncertainty, and government mistreatment and negligence.

Arthur’s access to his meds and social worker getting cutoff epitomizes how poor people with disabilities are some of the biggest victims of these conditions. Social scientists actually have a name for such government practices. They’re called “austerity politics.”

In a basic sense, we have been living under an era of “austerity politics” for decades. Since the 70s, governments, at every level, have been cutting costs and services (i.e. downsizing), in the name of “fiscal responsibility” and in order to foster a better “business environment.” It’s a process, a project really, that started as a result of a sluggish economy, increased foreign competition and lower corporate profits. The movie is set in the early 80s, the decade when the process accelerates. (My mom would actually lose her job with the State of California in the late 90s, due to layoffs.)

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An abandoned psychiatric hospital

Mental health services have not gone untouched. People like to blame the Republicans and Ronald Reagan for the closing of state psychiatric hospitals. But today, even in “Liberal” San Francisco, we have a local government severely neglecting the needs of its own SMI population. So much so, we have local MH workers themselves speaking out against the inadequate conditions and publicly protesting. In fact, former Chief Psychiatrist of SF General Hospital, Robert Okin, describes the situation as a “war on the mentally ill.”

Arthur’s social worker’s full comment actually was “They don’t care about people like you, Arthur. They don’t care about people like me either.” I’ve had my issues with regular staff and frontline workers. In fact, a friend my mom and I made at her dialysis center even told me, in a private conversation, that her coworkers don’t care about the patients. They only care about the money.

This regime we are living under of austerity leaves me with no doubt, however, that high level administrators and public officials are the biggest culprits of all. They make it too difficult, if not impossible, for even the best and most empathetic workers to do their jobs.

“Society decides what’s fun-ny.” 

Arthur says this after embracing his homicidal, violent urges and becoming The Joker. It’s the beginning of a strident public criticism he makes, while appearing on a late-night talk show, to explain his rage and motives. His criticism really is the first time he says something so politically cohesive in the movie.

In a basic sense, he says society made the rules and the rules were made to keep him marginalized and an outcast. He worked hard and honestly, but he lost his job cause of a dishonest coworker and cold-hearted boss. He wanted to get better, but he was cut off from his meds. He cared for his ill mother the best he could, but in the end, she was his biggest betrayer and abuser.

My life experience hasn’t been so bleak. In fact, there were many people, workers, clinicians and strangers that were nice to me and my mom, and did try to help in some way. And my mama knew I loved her and I know she loved me, even though her SMI strained our relationship.

But I damn well know there are too many people who have it worse, like Arthur. And some of them, unfortunately, do lash out with violence. As it is, I’ll never forget what was done to me and my family. I don’t know if I’ll ever be able to forgive. Society will try to focus on individual motives or psychological reasons for behavior it doesn’t like, but the fact of the matter is society, is too often, the monster.

High Stress, Caretaking and Their Aftermath: PTSD Takes Root

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A selfie with mom, a few months before I moved her in with me.

My mom’s birthday just passed. She would have been a young 68 years old. Like last year, I went to the cemetery to take her flowers. Visiting her grave on special occasions is a kind of ritual for me now, and I don’t expect that to really ever change. It’s part of my healing, and my healing is going to be a long road, I’ve realized.

Sure, the grief is lessening, but other issues remain. Or I should say, have revealed themselves, like my Post Traumatic Stress Disorder (PTSD). Now, I knew I had anxiety. I’ve wrestled with that for some time. In fact, I mentioned that to my mom her last week with us, while she was in hospice, as a way to try and make some atonement for losing my temper with her at times. I apologized to her and said my anxiety can make me irritable.

Just weeks after my mom passed, though, I began to notice some persistent changes and problems with my mind and body. Things I hadn’t really noticed before. As I researched and learned through counseling, they were definite signs of PTSD. Before I explain my experience, here’s what the National Institute on Mental Health (NIMH) says about it:

“Post-traumatic stress disorder (PTSD) is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event… Nearly everyone will experience a range of reactions after trauma, yet most people recover from initial symptoms naturally. Those who continue to experience problems may be diagnosed with PTSD.”

It’s well-known that PTSD is something experienced by many combat vets. Experiencing the death of a loved one, however, is also traumatic and can lead to PTSD in survivors, especially when the suffering is prolonged.

Mental health advocates have a name for this. It’s called “traumatic loss.” Two researchers define it the following way:

“A death is considered traumatic if it occurs without warning; if it is untimely; if it involves violence; if there is damage to the loved one’s body; if it was caused by a perpetrator with the intent to harm; if the survivor regards the death as preventable; if the survivor believes that the loved one suffered; or if the survivor regards the death, or manner of death, as unfair and unjust.”

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Restraints my mama was put in at a hospital.

My experience with my mom meets most of these “check boxes.” Over the course of many years, I lost my mom twice, once to her mental illness, the second time physically. In her last two years, the time she lived with me, her kidney disease would gradually take over. I witnessed her lose her physical strength and increasingly pre-age. And the violence? I saw, firsthand, how my mom was the victim of institutional discrimination, abuse and neglect. My heart broke over and over again, in many ways, in this whole ten year plus ordeal.

The sadness and guilt were as intense as I figured they would be, after my mom passed. But as I got better at navigating the murky waters of grief, I started to notice those other changes and problems.

For one, I was restless and uneasy. I would pace between rooms in the house at times. I didn’t recall ever doing that before, aside from the week my mom was in hospice. I liked to relax whenever possible. What was this about, I wondered?! I began noticing, too, that something was going on with my mind. Thoughts were racing and intrusive, and I would be a bit forgetful. I wasn’t able to “zone out” by just watching TV anymore. I had to, also, navigate and skim things on my computer, when watching a TV show. Memories and moments of despair played like songs on repeat in my mind, like the time my mom told me, about a month before she passed, that she didn’t have the strength in her hands to cut zucchinis for Albondingas soup. That was the last time she helped me in the kitchen.

I started to realize that it was like I was stuck. Stuck in my role as caretaker for my mom. Stuck trying to fight my hardest to keep her alive. Stuck dealing with, and often pushing back against, her doctors and hospital administrators, monitoring and assessing her condition every day, counseling her to take all her medicines, and then keeping her as comfortable as possible in hospice.

Yea, I was stuck. My body and mind didn’t know how to turn itself off or even how to lower the volume. Part of them, I’m sure, didn’t want to. I just wanted my mom back. How dare the system take her away from me, from us, so unjustly and prematurely! To accept my mom passing was to accept that we ultimately lost the “battle,” so to speak.

The restlessness, intrusive thoughts and hypervigilance I just described are classic symptoms of PTSD. I, thankfully, don’t have nightmares. But my sleep isn’t great. More than a year after mom passed, I still wake up a few times during the night, as if she’s still here. She’d wake me up, for different reasons, or I’d wake up to go check on her. And rare is the morning that I am able to sleep in past 7:00. I used to get up at that time, like clockwork, to give my mom her morning medicine. I can still be tired, but my racing thoughts won’t let me go back to sleep easily.

And irritability? Check. Anger? Check. While I experience these emotions at times, for what appears to be no logical reason at all, unrelenting intrusive thoughts summon them easily enough. As for flashbacks? Sure. When I see a homeless person or when I’m at a doctor’s office for a medical checkup, my blood pressure and anxiety easily rise. I’m back there, again, in some fashion.

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A tribute to mom: A rose, representing mom, going to heaven.

All this said, I am in counseling and doing my best to take care of myself. I was 8 months into my grief counseling when I started to see another counselor for more formal treatment. He would diagnose me with PTSD. I’m also experiencing low-level depression, which makes the self-care part of my healing hard sometimes (I have little motivation to cook), but my counselors say I’m doing very well, all things considered. Still, I know I need to find a meaningful purpose. I need to find peace. I need connection with others. I need understanding. It’s a long road and will probably always be a winding one. But I’ll persist and continue to heal because I know my mom would want me to.

February Musing #3: Hallucinations or Visitations?

A year ago, today, would be day 6 of hospice for mom. By then, she wasn’t eating and was physically very weak. She needed substantial assistance to get out of bed to go to the bathroom or another room.

At one point, I believe on day 5, she asked one of my cousins why she was getting weaker. My mama truly didn’t understand. Such was the state of her serious mental illness (SMI); She’d have little self-awareness about her true medical condition.

Indeed, since my mom first started exhibiting signs of a SMI, this had been a constant feature. Even as her physical health sharply declined over the years, her lack of self-awareness just became more elaborate.

“The machines (blood pressure and glucose monitors) work when they want to.” “The lab results are being tampered with.” “The medicine is what’s making me sick.” She’d say all these things and more on a regular basis.

In fact, to my mom, the beginning of hospice just confirmed her belief that she would start getting better, since she could stop taking her medicines (In hospice, a patient’s regular medicine is stopped and the focus becomes on keeping him/her comfortable. Yay for morphine.) This is what she was saying God wanted, before hospice even started, after all.

While we were careful with our words, in response to my mom’s question, my cousin could only tell her the truth, “It’s your kidneys.” Mama didn’t respond. It was taking a lot of effort for her to talk at that point. Perhaps she just decided to save her energy or just pray silently. But I’m sure that didn’t make any sense to her at all. My mama was expecting to get healthier and stronger, not sicker and weaker.

As if navigating the situation and counseling her weren’t challenging enough, given her delusions, she’d also experience intense hallucinations.

Now before hospice, as part of her SMI, mom had regular audio hallucinations. But aside from occasionally seeing things that weren’t there, like cameras on the walls (They were usually just spots of sunlight coming into her room.), she didn’t really have visual hallucinations. Visual hallucinations began appearing relatively early in hospice, though. Being new to her, this understandably confused and, at times, distressed and scared my mama.

They’d begin on day 3 and, curiously, would begin around the same time she’d start developing severe apnea. My girlfriend and I were talking to my mom by her bedside in the evening, when she seemingly started nodding off to sleep.  She closed her eyes mid-sentence and her head began to lower.

Around 30 seconds later, she raised her head, opened her eyes and asked us:

“Do you see them?”

“See who, mom? It’s just us. What’s there?”

“There’s some people standing over there. Shadowy figures. I can’t make out their faces.”

“Are they scary, mom?” I asked. To my great relief, she replied, “No.”

This continued around an hour that evening. Mom wouldn’t see things every waking minute, fortunately, before finally falling asleep. But she’d continue to see the shadowy figures and would begin to see flashes of light. She’d also say she saw a woman she didn’t recognize, sitting in the room with us. Thankfully, mom wasn’t frightened, but she was perplexed by these new experiences.

Disturbing and scary hallucinations first appeared in the form of several faces she would see. One appearing minutes after seeing a little girl. We had just convened in the living room with my aunt and cousins.

“Do you see the little girl?” she asked, as she pointed behind the couch.

“No mom.” “No Aunt Josie.”

The little girl disappeared and we continued talking and interacting with her, as normally and supportively as possible. My cousins, being older than me, had a lot of good memories to share with my mom and I about my mom’s younger days. They were reminiscing when my mama let out a sudden shriek and pointed towards one corner of the room. I don’t remember the exact words she used to describe the face, but she described a ghoulish or devilish morphing one.

Unfortunately, these scary visual hallucinations would continue when mom had acute psychotic episodes. I believe three altogether.  In the evening on day 6, for example, she started complaining that her feet were getting really hot. She pleaded with my girlfriend to take her socks off. “Hurry! Hurry!” she said frighteningly.

She then described seeing the earth opening up below her and became afraid she was going to fall down through. We did the best we could to keep her calm and assure her Jesus wouldn’t let anything happen to her. “Focus on Jesus, mama. Look for Jesus. Nothing sinister is welcome here.”

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A picture/illustration of Jesus mom had in her room. a caption

The hospice chaplain recommended we tell her to look for Jesus and the light, when she started seeing things. During another acute episode, I read her favorite verses from Psalms for close to an hour. My aunt and cousins prayed with her, recited the Rosary and had salt at the ready for the duration of their stay.

I saw my mama suffer tremendously throughout the years, physically, mentally and spiritually. It traumatized and saddened me, for sure. And seeing her scared during hospice was particularly heart wrenching and painful, since she was in her final days.

Not being especially spiritual or religious, I found myself asking my grandmother, my mom’s mom, to help me and mom, out of desperation. I think she visited us on day 7, in the early morning. I’m pretty sure I smelled her, after not smelling her in more than 20 years. I, also, think mom sent a humming bird to visit me this past Monday, what would be the first day of hospice last year. I’ll elaborate on that event in a subsequent blog post.

Hospice was life changing. I’ll never be the same again.

(To Be Continued)

February Musings #2: Reliving the Hardship of Hospice

Mama would be in hospice at home a total of 9 days. After two days of many tender, loving moments with family and no significant complications, she’d start experiencing nausea and end up vomiting twice from her bed on day 3. That day was a year ago today.

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Mama’s room, a place of tranquility now.

This was on my mind pretty heavily for most of the day. I would actually end up sweeping and mopping her bedroom floor today because of it. The grief and restlessness motivating me to do so were clear. I went over the areas of the floor she vomited particularly well, though the floor wasn’t too dirty, since nobody enters that room now but me. And that’s just occasionally, mostly to open and close the blinds.

Overall, I’m thankful I’ve felt pretty good today, though. This is in stark contrast to how I felt for much of Monday, what was day 1 of hospice for mom. Those feelings of tremendous worry, fear, sadness and even some guilt that started to hit me when hospice day arrived reappeared, forcing me to relive it all over again.

My mind raced with tremendous stress and anxiety, on that day a year ago. Would the hospice staff and nurses be good and helpful? I heard of bad experiences with loved ones in hospice from friends and family. Even if they were decent, would my mom end up suffering too much in some way, still? Kidney failure is supposed to be one of the relatively easiest, painless ways to die, I was told. OK, but there’s still the matter of her serious mental illness. That was never successfully treated. I knew acute episodes were going to be inevitable. And the fact remained that she was coming home to die! I didn’t want mom to die! I fought so hard to protect her and keep her alive for so long!

On top of all this, we couldn’t even tell my mom she was coming home to die in hospice care. My mom wanted to live. She didn’t even believe she was really sick, due to her serious mental illness. For years, in fact, she regularly insisted that “devils” were attacking her organs and that she didn’t really even need medicine. I lied and told my mom that the new hospital bed, oxygen tank and medical support at home, all provided by the hospice, were just part of added support the hospital was giving us. Luckily, she didn’t question any of that.

Not being able to tell my mom, though, was to a large extent like a gut punch, the latest in a long history of gut punches. There was nothing else that could be done, though. Mom was suffering mightily. For months prior, she was declining markedly and becoming increasingly uncooperative and medically non-compliant. I knew the time was near and was actually frustrated that her doctors wouldn’t help me put together a plan for putting her into hospice. “She has the right to refuse treatment,” they’d say. I grew fearful that she’d end up dying of a heart attack at the house, perhaps alone or in my arms. Hospice was the more humane option, when all things were considered. I knew it was the right choice, as hard as it was.

The hospice staff and nurses ended up being wonderful. The nurses were exceptionally responsive, skilled and caring. They’d end up coming every day. What a blessing! We’d have some difficult times with my mom, but overall, things went as good as can be, considering the circumstances. And for that, I’m grateful.

But seeing my mama increasingly decline (slip away) was probably the hardest part for me. Day 3 was the marked start of that. From then on, every day, she’d get weaker and exhibit more symptoms that death (her transition) was nearing. She’d begin to lose her appetite. Her physical strength would begin to leave her. She’d start hallucinating pretty regularly, too. She’d become bed ridden. She’d start frothing at the mouth….

A small piece of pumpkin pie, I believe, was the last meal she’d have. She loved pumpkin pie. In hospice, patients are allowed to eat whatever they wanted, within limits. That was on day 5, I believe. My memory of events and the timeline do get a bit fuzzy. It’s the trauma, I’m told.

(To be continued)

 

February Musings #1: Mom Enters Hospice

February arrived with a wallop. I was instantaneously taken back to this time last year, the month my mama passed. The memories and flashbacks began occurring with a feeling of slight nausea. That hasn’t happened before, at least not since mama entered hospice the second week of February. 

As February approached, I’ve wanted to write a post on my yearlong journey with grief. All this has changed my mind. My emotions are raw enough right now. I need to be careful. I’ll be visiting enough memories and experiences naturally. I don’t need to immerse myself any further. 

Instead, I thought I’d post a bit of our hospice experience. I believe I still haven’t processed the time and events fully, so maybe this would help. Today, the 16th, was the day she entered hospice. It was initiated in the hospital. She had been admitted the day before, due to breathing complications. Mama had stopped dialysis and started experiencing more fluid retention, exacerbating her congestive heart failure.

As was usually the case, getting mom into hospice was fraught with immense stress and hospital/medical bullshit. Here’s a short recollection of how the decision was made…. by me:

A year ago today, the hospital gave me the authority to make decisions for mom. I had to put her into hospice. She had stopped dialysis and was increasingly medically non-compliant. It was a decision you never want to make. I didn’t hesitate when they asked what I wanted, though. Mama’s suffering was too great.

It was a bit fortuitous the way it played out. Top to bottom, authorities and health care workers gave her too much agency. “She has the right to decide/refuse treatment,” they’d say. On this day, her doctor and the hospital social worker were in the room with me together. That never happens.

The doctor walked in while I was talking to the social worker. At that point, the social worker was being super unprofessional, casually talking to me about how downhill San Francisco had gone. How dirty it is and how it “smells like pee.” I’m pretty sure I made her feel uncomfortable. The moment she walked into the room, minutes before, I told her what I was expecting from them.

Hospitals have traumatized me. I was hyper vigilant and told her my mom is not being released, until a plan is in place for her to be adequately taken care of, whether at our home or a nursing facility. The doctor walked in and, after a short conversation with me, straight up asked the social worker, “Does Josie have mental capacity to make decisions?” The social worker, without assessing my mom directly, said, to my relief and surprise, “No. She has a serious mental illness.”

The social worker only knew she had a SMI because I told her she did during our short conversation. She didn’t assess my mama directly like I believe she is required to do. Mama was, luckily, sleeping the whole conversation, just a few feet away. (Hospitals are dumb. Their staff will have conversations about their patients’ mental states right in front of them.)

Interestingly, many times in the past, even when authorities knew mom had a SMI, they still always hid behind their civil rights language and laws: “She has the Right to refuse,” they’d say. This even when she was clearly in a psychotic state.

When I look back, maybe it was God or the universe helping me and my family. Mama had been saying Moses was coming for her, after all….  (To be continued)fullsizeoutput_592

 

 

 

Mom Was Homeless for Christmas. Never Again!

(This is a revision to a post I wrote in December 2016. It lost its focus halfway through, I recently realized.)

The end of the year holidays and winter cold were some of the hardest times for me and my family, since around 2010. Since then, my mom’s housing was unstable at best. The worst of it was punctuated by her being effectively homeless for two of those years, 2010-2012. In that time period, very short housing stints aside, she primarily lived in a car.

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Mom and I on our way to Marie Callender’s for Thanksgiving in ’15.

I’d do my best to spend Thanksgiving and Christmas with her, regardless of her immediate living situation. From the Bay Area, I’d drive down to meet her in Bakersfield or Fresno, take her to Marie Callender’s, her preferred restaurant choice, and usually put her up in a hotel room, so I could spend extra time with her.

I’d, also, take her shopping for some clothes and undergarments.  She’d regularly have minimal clothing. Clothes that she’d buy or I’d buy for her would, typically, disappear within a couple of months.

She’d claim people would steal them from her car or from the places she was living in. I knew, though, that she probably threw them out. That was her modus operandi, after all. When pressed enough with questions, she’d say they became contaminated with toxins or spoiled by evil spirits. “The devils tried them on!” she’d exclaim.

This is what the holidays were for me. There was no real respite or joy from my time off of work. It caused me immense emotional pain to visit my mom, since I knew my mom preferred to live with either me or my sister. I despised the system for her feeling abandoned and/or unloved.

We had tried to care for her, of course, in the past. Me, in San Francisco, in the summer of 2009. My sister, for a few months, in San Diego in 2005. But it proved to be too difficult and stressful.

My mom, unfortunately, refused to accept psychiatric treatment. While she had her “good days” and could appear functioning or “normal,” going back to at least 2009, I could discern she was in a psychotic state a majority of the time.

Delusions were definitely there most of the time. She believed and openly claimed people and the F.B.I were spying on her and following her. She, also, experienced hallucinations. The “good voices” were the “Gods.” The “evil voices” were the “devils and witches.” She would “talk to herself” for hours, including throughout the night, at times. Interestingly, in more recent years, she learned to talk to herself quietly, outside of acute episodes.  If I couldn’t hear her, I could still see her lips move.

Her medical and psychiatric conditions would both deteriorate over the years, from her not being able to take adequate care of herself. In fact, beginning in around 2014, hospitalizations would become a regular occurrence. In my estimation, she’d be hospitalized every two months, on average.

By this time, she had developed congestive heart failure, cataracts and a schwannoma (a “benign” brain tumor), to go along with her diabetes. Like clockwork, she’d regularly stop taking her various medications, which would then exacerbate her medical problems. Her CHF would cause breathing/respiratory problems and her glucose level would become life threatening, often times reaching over 400! In 2015, this would culminate in my mom and I spending our Christmas in a hospital. She would be intubated for four days, including Christmas day.

By then, I had had enough. I couldn’t take seeing my mama’s health deteriorate, particularly her physical health. At only 63 years old, she’d have to walk with a cane and, sometimes, a walker. There were even times when she had to use a wheelchair.

I remember the first time I saw her in one. She looked so feeble and dejected, with her head hung down and food on her shirt. My mom was prideful, beautiful and strong! Despite all she was going through, she’d still do her best to assure me she was doing OK and getting better, when I’d inquire about her condition/situation on a visit or on the phone.

In mid-2015, I decided to start looking for housing for my mom and I. It took me longer than it should have. One place I secured, in December of 2015, fell through when the dishwasher sprung a leak and flooded the floors, the very first week I moved in. When I began my search, I certainly didn’t think I’d end up in Modesto. I signed the lease for a nice single family home in mid-February 2016 and moved mom in the following week.

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Mama after helping decorate the tree in ’16.

As difficult as most of this past year has been living with my mom, I find much peace and consolation in knowing she’s physically safe. In the least, I don’t have to spend any sleepless night worrying about where and how she is, like I used to before. It hit freezing temperatures for the first time this winter this past week. Letters my mom would write to me, exclaiming how cold it was living in the car, have given way to complaints that the house is too cold at 65 degrees.

Tomorrow is Christmas and my mom has been able to enjoy her first Christmas tree in about ten years. She’ll, also, have presents to unwrap and a delicious meal made by our friend, Shari. She’s still greatly distressed psychiatrically, but I have, more or less, been able to help medically stabilize her. She takes her medicines and goes to all her doctor appointments, mostly.  For me, my blood pressure is the best it has been in years. For these things, we are grateful.

(My beautiful mama passed away in late February last year. While she was weaker, from stage 4 kidney disease, and more aloof in her last months, I did the best I could to make sure she had a good Thanksgiving and Christmas, nonetheless. She was, of course, greatly missed this past holiday season. I love you mom! Happy New Year!)

The Cold Has Arrived. I’m Back in My Lowest Days Again.

My mama passed away in late February, my birthday month and almost two years to the day I moved her in with me. The immense grief has gradually decreased, as I read and was told it would do. But some days, the grief, and the guilt and sadness associated with it, hit me intensely. It combines with my “PTSD.”

I say PTSD because of the intensity of the painful memories and feelings I experience and relive at times. Partly situational, there are a number of things that can trigger it. Most recently, it has been facilitated by the arrival of the cold weather.

The cold is a raw reminder of the time my mom was homeless, living in a car, for around two years. The whole ordeal was traumatizing and depressing. I would, in fact, be put on an anti-depressant for a short time then.

In the Central Valley of California, the weather is similar to that of a desert. In the summer, it gets hot, over 100 degrees many days. In the winter, it gets cold, into the 40s and below freezing at night.

Making it through the cold winter nights was very difficult for my mom. She would have to turn on the car and run the heater throughout the night. How I hoped the car engine or heater wouldn’t go out from her doing so! My mom was tough and, actually, didn’t complain much at all. But she’d of course ask for help at times.

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A letter from mom

In a letter she wrote, asking me if she could come live with me, she specifically mentioned the difficulty of surviving the cold. I bought her blankets and clothes to help and checked in on her regularly, but it wasn’t enough. She didn’t know, given her serious mental illness, but I suffered too.

I had tremendous trouble sleeping during cold nights, knowing my mom was out there. It was agony. And just stepping outside in the cold weather would strike me with dread and despair. The first winter my mom was homeless, I lost a lot of weight. By the second, my stress and anxiety reached the point that my doctor suggested I take a leave from my job.

The cold weather arrived a few weeks ago, freezing temperatures this past week. With it at times, the feelings and memories of those two years. Each time, I’m there again, in that time period, in a moment, seeing her and hearing her suffer in some way and feeling the dread, agony and heart break all over again.

If it’s not the cold directly, it’s seeing homeless people trying to survive it, like the woman I saw as I drove to work the other day. In a sleeping bag on the sidewalk, I noticed her as she sat up. She sprung up and made a facial expression of great discomfort and pain, mouth wide open, eyes closed, like a silent scream. That moment took me right back to my mom.

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Me and mom before Thanksgiving dinner at a Marie Callender’s in ’15.

At these times, and whenever the grief is great, I take deep breathes and try to remember all that I did to help and take care of my mom. That includes advocating for her fiercely when she was homeless. And I’d still visit her when I could, including for Thanksgiving. I’d usually take her to Marie Callender’s, her place of choice for the occasion.

In a few days, it will be the first Thanksgiving without my mama. I’ll miss her company. To help get through it, I’ll be spending it this year in the warmth and company of my extended family, my aunt (my mom’s sister) and cousins. It’s what my mama would want: warmth, instead of cold, connection, instead of estrangement, hope, instead of despair. I’m trying, mama.

San Francisco Liberals Are Split on How to Help People with Serious Mental Illness. They Also Don’t Want to Spend The Money.

The homelessness crisis in San Francisco has put a spotlight on another crisis, the plight of people with serious mental illness (SMI) who are too sick to help themselves.

According to the Treatment Advocacy Center (TAC), approximately 3.3% of the U.S. population (8.3 million) live with bipolar disorder or schizophrenia.

As any SF resident knows, the intersection between homelessness and SMI is a significant one. According to TAC, around 30% of the chronically homeless are reported to have a SMI.

Of course, mental health services for this group are available. But for too many, they are inadequate, if not impossible to receive. In fact, about half of people with SMI are untreated at any given time. Without effective treatment, too many are left to suffer in the streets or their cars, under bridges or subway tunnels.

To address this crisis, local State Assembly representative Scott Weiner, with support from SF mayoral candidate London Breed, is sponsoring SB 1045. The bill would make it easier for a court to place a conservatorship on individuals who are deemed unable to adequately take care of themselves, as a result of their serious mental illness. As a former conservator, I understand they are absolutely necessary for many people with SMI, but Weiner’s and Breed’s solution falls well short.

In socially liberal San Francisco, from Patient and Disability Rights groups, to the ACLU to social justice activists, the bill has plenty of critics and opposition.

Yet, how humane is it to let people with SMI suffer from psychosis, and in many cases, untreated and deepening psychosis? The research is clear that the longer people go without adequate treatment for their SMI, the more difficult it is for them to recover. This group is also extremely vulnerable to physical and sexual violence. On Twitter, Wiener regularly makes this point.

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And the reality is current law already allows authorities to involuntarily hospitalize (i.e. 5150) someone. Part of the problem is that the legal concept “gravely disabled” is interpreted far too narrowly.

Basically, one is gravely disabled when he or she is unable to provide food, clothing or shelter for themselves, as a result of their mental illness. However, authorities, from police officers to field clinicians, often say that homeless people are “self-directing” enough to not warrant a 5150 hold “as long as a person on the streets can say where they are going to sleep for the night,” even if it means sleeping behind a dumpster.

This despite the same person endangering themselves by running in traffic thirty minutes earlier and not actively being under psychiatric treatment for their known SMI.

Weiner’s bill recognizes this absurdity and includes a person’s medical and psychiatric history in evaluating whether or not a person needs to be involuntarily hospitalized and placed under a conservatorship.

Where will these people be treated, however? As mentioned above, about half of people with SMI are untreated at any given time, meaning their chances of experiencing acute psychotic episodes are very high. They will require immediate stabilization. For many, that means both medical and psychiatric stabilization and treatment.

Are there enough inpatient psychiatric beds available for the necessary medium to long-term stays? Nationally, the number of inpatient beds available has been slashed in the U.S. over the course of many decades. For example, from their historic peak in 1955, the number of state hospital beds in the United States had plummeted almost 97% by 2016.

This no doubt has contributed to the fact that prisons and jails are the biggest mental health treatment centers in the country.

Beyond a small number of advocacy organizations and outraged family members of loved ones with SMI, nobody talks about this national disgrace. As one such family member, imagine my surprise when I learned SF mayoral candidate Mark Leno makes this very point.

From his webpage: “Mental health policy experts recommend supplying 50 in-patient psychiatric beds for every 100,000 residents in the total population. In San Francisco, that would add up to over 430 beds. And yet, a 2016 policy analyst report showed that San Francisco only offers 163 beds.” He goes on to say that he will add 200 inpatient mental health beds, doubling the supply.

homeless-chicagoWithout doing this, Wiener and Breed are putting the cart before the horse. At worse, it looks like they are trying to appease business interests in the city that want the streets desperately “cleaned up” more than they are trying to help those with SMI and their families.

Because you have to wonder, why is this all of a sudden an issue now? No SF official was interested in helping me when my mom was living with me in SF in ’09. In fact, SF General Hospital released my mom prematurely on more than one occasion, even though she clearly needed psychiatric treatment. They fail to treat or release people prematurely because they don’t have the bed space. A representative in SF Behavioral Health told me as much.  I was her conservator at the time and the city failed to help me help my mom.

So again, why? Yes, part of it is the increase in the homeless population. The other part is the “nuisance problem” being caused by increased homelessness. It is hurting the business climate, plain and simple. This should not be the main basis for helping people that are homeless, especially those with serious mental illness and addictions.

The U.S is ranked 29th among 34 countries in the Organization for Economic Cooperation and Development (OECD) in supplying psychiatric beds. It is a sign of inadequate healthcare, not freedom.

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.

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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”

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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.

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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.”

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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.

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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.