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.”
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.”
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.
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.
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.”
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.
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.
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.
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.
I haven’t been too motivated to blog. In fact, it has been three months, since my last post. It can be time intensive and I don’t receive a lot of traffic on it, but I should just write to get better at writing, I think sometimes.
Besides, eventually, I may want to write a memoir or screenplay and writing regularly can act as a kind of journal of my life to help with that. I already regret not writing more about my experiences with mom or video recording her more when she was alive, after all.
And the number of views and followers shouldn’t really matter. As my experience with my mom taught me, even if you reach or save just one person, the love and value expressed in that transcend space and time. There is no big or small. And it’s the love shown for others that help one protect themselves.
Given this newfound perspective, I’ll be writing a new post in the next couple of weeks. It will be on a topic I’ve been wanting to write about for months: my experience as a caretaker for a parent. It’s unique and the story should be shared.
For some context, know that many mental health advocates are parents and many of them are caretakers for their children, who are recovering from serious mental illness. Parents, understandably, feel an undying loyalty to protecting their children. But what familial and emotional obligations do young adults hold for their parents?
As my boss has told me, I put my life and career on hold to try and help and take care of my mom. And, frankly, I don’t think many young adults would do what I did. As my mom’s heart doctor told her a couple of times when my mom was being uncooperative and defiant, “I hope that you appreciate what your son is doing for you. Many sons would not do this for their mothers. I know. I’ve seen it.”
I miss my mom, but I don’t miss her suffering. And caring for her was exceedingly difficult, since my own health suffered and declined, including my own mental health. In talking to my therapist, it turns out that I have chronic depression, dysthymia. I didn’t even know there was such a thing as chronic depression, until I was told in a grief counseling session.
While visiting my dad in Fresno last weekend, I told him I started seeing a therapist for my depression. I explained how it feels and how long, I believe, I’ve been living with it. A grey cloud in my head has been discernible since at least ’07. That was the year I started to try and get help for mom.
My dad listened mostly. I figured he’d be understanding, even though I know he has trouble understanding why I’m grieving, as much as I am, about mom. I told him specifically about two times late last year when I had trouble getting out of bed. That had never happened to me before. It no doubt occurred when it did because my mom’s health was declining and so poor, due to her kidney disease. He seemed the most concerned about me when I mentioned that.
I, also, told my dad I don’t need medicine for it, but that I do need more things to look forward to. I asked him to get the boat ready to go fishing. He said he would. He charged the batteries on it today and surprised me by saying, on the phone, that he was thinking about buying a bigger one. That brought a smile to my face. “Sounds good! Let’s go shopping!” I replied. That will definitely help get me through the year.
It has been a little more than three months since my mom passed away. Sadly, her scent is virtually gone from her room, but I am doing the best I can to honor and cherish her memory. Indeed, this is a central part of my healing process.
I try to visit her grave weekly in Madera. I’ll usually stop there for around thirty minutes, while on my way to visit my dad in Fresno. On special occasions, like Mother’s Day, I’ve stayed for more than an hour.
Last Friday, June 1st, was her birthday. Mama would’ve been 67 years old. For the occasion, I dressed up and took her a dozen red roses. She loved roses. Unfortunately, she wasn’t able to enjoy them for around the last ten years of her life. She, in fact, didn’t want any roses or plants near her because she thought that toxins could enter her body through them.
That’s what my mom’s untreated serious mental illness made life like for her. She literally couldn’t stop to smell the roses. Every day for her was a struggle. Seeing her suffer and deteriorate was a living nightmare for me.
One of the first things I did after my mom passed was throw out all her medicines. At any given time, my mom was taking around ten different ones for her various serious conditions. She was prescribed dozens of different ones in recent years. This includes “anti-psychotic” drugs like Zyprexa and Risperdal, but she never stayed on those long enough for them to have any effect on her.
The Risperdal was, ironically, prescribed to her during one of her last hospitalizations in January. They had never bothered to try and treat her SMI before when she was hospitalized. Predictably, she refused to take it after the first dosage because it made her feel drowsy.
I actually told the hospital staff to not give or prescribe it to her. What was the point? Why prescribe her psychiatric medicine without her being under the active care of a psychiatrist? The hospital didn’t even bother giving us information as to how to find one. They prescribed it anyways. It was waiting for me the next time I went to the pharmacy. Money, money, money! The game is rigged in the favor of the pharmaceutical companies.
Anything left from her week in hospice I threw out immediately too. My house and her room are going to be a sanctuary of peace and good health only. I returned pictures she had placed in plastic bags and drawers to keep safe from “being stolen” to their original locations. I placed her personal possessions, like her Bible, to prominent places on her dressers and book shelves. I bought a house plant for her corner table because I want something alive and beautiful to be in there.
These rituals and acts seem to be helping me. The feelings of guilt, which experts say are inevitable, are subsiding. Increasing my physical activity, reconnecting with extended family and attending counseling are all helping too. My trauma counselor told me yesterday that it was like I was in a war and I was the medic, the frontline and the commander all at the same time. I know it’s going to take great effort and time to calm down from that and sort things out.
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.
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.
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.
Without 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.
Last month, a concerned passerby posted a video on social media of a young woman named Rebecca being unsafely discharged from a Maryland Hospital. Public outrage was so widespread and swift, the CEO of the hospital released a statement, within a few days of the incident, stating the hospital is “taking full responsibility” for their failure.
Largely missing in the coverage and accounts, however, are details about what transpired inside the hospitals that led to such egregious outcomes. Is it incompetence or negligence? Who in the hospital is to blame? Are policies and laws contributing factors?
As a son of a mother who suffers from a serious mental illness (SMI), I’ve experienced several unsafe discharges and hospital mistreatment of my mom firsthand. Like Rebecca, my mom has been wheeled out of a hospital in the middle of a psychotic episode. Certainly, part of what makes people with SMI so vulnerable to this inhumane treatment is that many of them don’t believe they are ill. They often refuse or stop psychiatric treatment. When they stop taking their psyche meds, psychosis inevitably follows. As Cheryl, Rebecca’s mom, told CBS news: “She has to be on meds, otherwise she has psychosis. She will have a manic episode.”
In my mom’s case, she harbors deep delusions and paranoia about the medical system as part of her serious mental illness. She believes medicines are poison, so is prone to stop taking them at any given time, for example. This is all reinforced by voices that she hears: The Meds Are Poison Again
Over the course of the last five years, both my mom’s physical and psychiatric health have substantially deteriorated, due to her lack of self-care/adherence to treatment. Hospitalizations have become pretty regular events, as a result. While hospitals are limited by their own policies and government laws, and patients have the “Right to Refuse” treatment, on multiple occasions more should have and could have been done legally, procedurally and ethically to help and treat my mother.
Between 2012-2015, my mom was hospitalized at least a dozen times in Kern County and neighboring areas. For two of those years, she was homeless, living in a car. When I could, I’d travel down from San Francisco to be with her. I was mostly sidelined to talking with doctors and nurses on the phone, though.
As it turns out, I didn’t even know about most of her hospitalizations. I only found out about them by recently acquiring her medical records from various hospitals. Since moving my mom in with me in February 2016, I have seen the process play out three times firsthand. I have a unique experience and vantage point, so to speak.
Patient In, Patient Out
Like clockwork, starting on day four or five, hospitals begin to make clear that they want my mom discharged. The physical therapist usually gets deployed at this time (A patient has to have a minimal amount of strength to be safely discharged.) and the case manager and doctor start discussing discharge plans. This is the very time table I’ve experienced, even when my mom’s vital signs aren’t stable and she’s physically very weak.
This inevitably leads to breaches in ethics and law. In a 2012 incident, for example, a Kern County hospital would have discharged my mom unsafely AND illegally, if not for my presence and direct advocacy. The attending doctor wanted my mom to begin taking insulin as part of her treatment plan. One problem: my mom had developed cataracts, so was incapable of administering the insulin shots to herself. The doctor and I agreed that she should go to a skilled nursing facility for assistance.
Despite this, the hospital was planning on discharging her on what would have been the fourth day. Upon talking to a Director, it became clear the Director was ignoring the doctor’s treatment plan and placement recommendation. She told me that my mom could just continue to take oral meds! I told her I expected my mom to be placed in a skilled facility until she was able to administer the insulin herself and that I knew discounting the doctor’s treatment and recommendations in a hospital discharge plan is legally prohibited.
The hospital acquiesced reluctantly. It’s hard to imagine this absurd situation happening if my mom was wealthy and not on government insurance. Whatever the exact reason(s), the hospitals are obviously trying to minimize costs.
During Psychosis, Inhumane Treatment is Policy
I should say at this point that my mom has never been successfully treated for her SMI. Suffice it to say, the chances of her experiencing an acute psychotic episode when hospitalized are very high. In this state, she will start openly accusing the hospital staff and doctors of trying to kill her. She’ll begin refusing her medicine, try to pull out her IV, become hostile and sometimes a bit combative. She’ll, also, often times try to leave the hospital on her own accord.
I’ve seen this happen, firsthand, and can only imagine this was par for the course when she was estranged from me. And while I’ve always known that hospitals were limited in what they could do to my mom when she’s having an acute episode (They’re not psychiatric hospitals after all, right?), I have quickly learned that they regularly and consciously do much less than they can to stabilize and keep her safe, despite her psychosis.
I experienced this directly in December of 2015. My mom was hospitalized due to respiratory complications related to her congestive heart failure. Like so many times before, she had stopped taking her medications. She was almost completely non-responsive by the time she arrived and was immediately placed on a respirator. On day three, upon my arrival, I would find out that her glucose was above 700 when she was admitted!
On day six, merely two days after being taken off the respirator, my mom began to have an acute psychotic episode. We were essentially abandoned by hospital staff when it became clear that my mom was going to continue to refuse treatment, after pulling out her IV line. Her room was directly in front of the administration desk, so there was no way, given the commotion, that the charge nurse and other supervisors weren’t aware of what was going on.
The hospital staff left me in the room alone with my mom, as she became increasingly agitated and began demanding that she be taken home. I requested a psychiatric evaluation, in the hopes that she would be considered a “danger to herself” and placed on a 51/50 involuntary hold.
Under CA law, a 51/50 authorizes the involuntary hospitalization and possible treatment of someone experiencing a psychotic or suicidal episode. I say possible because a person can be involuntarily hospitalized, but may still be released without undergoing treatment, as has been the case several times with my mom.
As we reached the two-hour mark of this crisis, it became clear that the hospital didn’t want to take any real responsibility or time to help and treat my mom. At one point, the night nurse, who had just started his shift, was willing to restrain my mom, after seeing my mom almost fall trying to get out of her bed, but was overruled by his supervisor. Eventually, my uncle would arrive, after being called by my mother. The hospital would use his willingness to aide my mom in their desire to wash their hands of the situation.
After some argument, the administrator contacted the attending doctor in order to help decide what to do.
As the audio indicates, I ended up arguing with the charge nurse about having a mental health (MH) crisis team (“Metro Evaluation Team”) to come to the hospital to do a psychiatric evaluation on my mom. Hospitals have their own psychiatrists, but in some counties like Kern County, MH crisis teams are also available. I was told they could go to the hospital by an operator I talked to with the county’s MH crisis line. I had called the crisis line about an hour before, just moments after my mom took out her IV. As one can hear, however, the charge nurse denied that the MH crisis team could do that. She went so far as to misrepresent the involuntary treatment process in her argument.
When someone is going to be involuntarily treated for their psychiatric illness, they are first medically stabilized. This way, the doctor can be sure there isn’t an underlying medical problem causing the psychosis. She referenced these steps in the process to claim that the Metro team couldn’t psychiatrically evaluate anyone at a hospital at all, unless the person was medically stabilized first.
My argument was there was no reason why my mother couldn’t remain there to be stabilized before she was transferred to a psychiatric facility, assuming the MH crisis team deemed her needing involuntary psychiatric treatment. It’s possible she misunderstood the process herself. I find it more plausible that she intentionally misled me. Either way, she didn’t even bother to call the MH crisis team to get clarification or advice. I couldn’t call the crisis team myself. The hospital is required to make the call. That’s common policy in many counties that utilize MH crisis teams.
My mom would be effectively denied a psychiatric evaluation, even though she was in the throes of an acute episode. The charge nurse had actually placed the order for the hospital psychiatrist, but in the end, effectively deemed my mom “mentally competent” enough to have her sign herself out “against medical advice.” The administrators obviously knew medically/physically that my mom was not well enough to leave the hospital, so were insistent she sign the form. The hospital would supply my mom with a wheel chair and have the nurse wheel her out to a waiting cab. The nurse would tell me minutes later that he was ashamed of what happened.
Shortly after this incident I moved to Stanislaus County and moved my mom in with me to try and take care of her. I’ve managed to greatly reduce the frequency of her hospitalizations, but three have still occurred under my caretaking. Compared to Kern County, my experience with hospitals here has been very similar. The discharge is rushed and the hospital becomes neglectful, at best, when she starts to become resistant to treatment. When I requested psychiatric evals during her first two hospitalizations, I was met with the same determined and concerted opposition I experienced that day in Kern County. Whether it was the charge nurse or the hospital social worker, hospital admin and staff insisted she didn’t need one.
My experience clearly suggests that it’s standard practice for hospitals to duck responsibility for a patient’s well-being when that patient experiences a psychotic episode. After all, if hospitals are willing to neglect and jeopardize my mom’s health in front of me, just imagine what they do to patient who doesn’t have a family member or someone to advocate for them during their hospitalization.
Cheryl stated that her daughter had been missing for two weeks before she saw her on the video. Since then, fortunately, Rebecca has started receiving psychiatric treatment and is reported to be doing better. Clearly, other and better options are available, as this case has shown. And even with my mom, we just recently experienced a different, better outcome in her most recent hospitalization a few weeks ago.
My mom was restrained for the first time ever in her history. The difference? Apparently, her having a catheter attached to her jugular to begin dialysis. She attempted to pull on it when she was in an acute episode. The countless times she has pulled out her IV lines and has tried to walk out of the hospital, despite being medically unstable, have never proven to be enough, in contrast.
My mom would eventually calm down and cooperate long enough for her to be stabilized medically. She’d be safely discharged on the eighth day. As I told one of the hard working nurses, to me, it was a good hospitalization for my mom overall. People with serious mental illness and families like mine deserve more help, care and respect than we often receive. Stop the patient dumping and unsafe discharges now!
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.
I know the drill already, though. Emergency personnel can try to talk her into going to the hospital, but if she refuses, unless they see her as a clear danger to herself, they aren’t going to make her go. At some point, her blood pressure and/or glucose will get dangerous highly and I’ll have more leverage to request/demand they hospitalize her. I will probably make the call sometime Wednesday afternoon.
I’m of course very stressed out and worried about my mom. I frankly don’t think she will survive another hospitalization. The last two times she has been hospitalized, she never recovered to where she was prior to that. And I worry about the possibility of her becoming incapacitated in some way, leaving me to decide her fate. I don’t want that choice. I shouldn’t have to make that choice. My mom should have been given a chance at recovering and rebuilding her life years ago.
(Originally published in August of 2010. It was the beginning of dealing w/persistent government neglect towards my mom. Knowing what I know now, my mom should have met criteria for what is considered “gravely disabled” and been taken in for mental health treatment, not just at this time, but countless others since.]
On Thursday night, exhausted and hungry, my mother began to cry and plead with two of my cousins: “I’m tired of this. I’m tired of all of this. I don’t want to live like this anymore. I have nothing.”
These break downs happen often. While she shows tremendous courage and endurance in living her life with an untreated serious mental illness, at times of distress, she breaks down and cries, saying that she doesn’t want to live estranged from her family. Needless to say, it is heartbreaking for me and my family to see and hear my mother when she is distraught like this.
For a week, my mother and uncle were homeless AND without a car in Bakersfield. My uncle had driven them both down to Bakersfield from Fresno last Thursday. Driving back and forth between Bakersfield and Fresno has become routine for them these last few months. They do it when my mother feels Fresno is particularly unsafe, i.e. when the “enemy is out to get them.” They will drive around for hours, or even days, and will sleep in their car.
Sometime the following evening, though, my mom was pulled over by the police while driving. For all I know, my uncle just let her drive because she wanted to or because he was tired and asleep in the backseat. Whatever the reason, letting my mother have access to the keys was foolish because my mother has a suspended license and the police impounded the vehicle.
They stayed in Bakersfield for a week trying to get their car back. For a couple of days and nights, members of my extended family put them up in a hotel. That was all my extended family could do for them, though. Like my sister and me, it is too difficult for my cousins to be around my mother, especially since they have young kids. My mom has scared their kids before, believing as she does that there are people and evil spirits around her and trying to cause her grave harm. So, for the other five nights, instead of going to a homeless shelter like my cousins and I suggested, my uncle and mom elected to sleep in another uncle’s car.
Come this past Thursday evening, they were both worn out. According to my cousins, my mom was so tired and hungry, that she looked like she was going to pass out. I can only imagine what her glucose level might be. She admitted to me on the phone earlier that day that she is out of one of her diabetic medications.
My sister and I made phone calls throughout the week to Adult Protective Services (APS) and the police to try and get them to do a welfare check on my mother and, if possible, to connect her with temporary housing. APS and the police were unable or unwilling to do anything, though, because we couldn’t tell them with any certainty where my mother was going to be at any given time. We knew my mom and uncle were at the courthouse during the day, but APS told us they only go to actual residencies and a rude police operator told me that the police aren’t going to waste their time by looking for someone in a courthouse.
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.