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.
“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.
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”
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.
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.”
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.
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.
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!