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)
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.
Newspapers from coast to coast ran articles on other incidents of “patient dumping” in the immediate aftermath. The Sacramento Bee, for instance, ran this article: Hospital dumps senior at homeless shelter.
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.
Lighting a candle for my mama and asking people on social media to pray for us.
I know the drill already, though. Emergency personnel can try to talk her into going to the hospital, but if she refuses, unless they see her as a clear danger to herself, they aren’t going to make her go. At some point, her blood pressure and/or glucose will get dangerous highly and I’ll have more leverage to request/demand they hospitalize her. I will probably make the call sometime Wednesday afternoon.
I’m of course very stressed out and worried about my mom. I frankly don’t think she will survive another hospitalization. The last two times she has been hospitalized, she never recovered to where she was prior to that. And I worry about the possibility of her becoming incapacitated in some way, leaving me to decide her fate. I don’t want that choice. I shouldn’t have to make that choice. My mom should have been given a chance at recovering and rebuilding her life years ago.
As a caretaker and advocate for my mom, I’m constantly reminded how much of what we have experienced, in dealing with my mom’s serious mental illness (SMI) and the mental health system, is reflective of the Latino/a experience. From problems with acquiring basic access to MH services, to trying to achieve adequate treatment and support, to the unresponsiveness on the part of MH professionals, to navigating cultural barriers in my family/community, all have been unnecessarily daunting. In our case, they have proven to be impossible to surmount in getting my mother adequate treatment.
Percentage wise, Latinos/as currently make up around 18% of the U.S. population. Around 16% of Latinos/as have experienced a mental illness in the last year, compared to 20% of whites, 16% of blacks and 13% of Asians.[1]
In respect to Latino/a subgroups, young Latinos/as have higher rates of attempted suicide compared to whites. For males, it was 6.9% compared to 4.6%, respectively. For females, it was 13.5% compared to 7.9%.[2] Among U.S. born Latinos/as, Mexican-Americans and Puerto Ricans experience higher rates of mental illness than Cubans and other Latinos/as.[3]
The rates may very well be higher, however, given the multiple barriers preventing Latinos/as from acknowledging they have a MI and receiving adequate treatment. In the case of my mother, it took years to get her an official diagnosis. (In the case of my father, the PTSD he developed from the Vietnam War wasn’t officially diagnosed until recently, after he retired.)
Regardless of race/ethnicity, denial is a common response towards MI. This was very much the case with my mom and family. In hindsight, it was clear there were times when my mom was harboring extreme delusions and experiencing bouts of mania. At crisis times, the situation would swing between heated arguments with her to just avoidance. We viewed her “locura” (“craziness”) as just part of her personality.
More specific to Latino/a families than denial is pride. We don’t like others to see our weaknesses. We don’t want to admit we even have any. For most of us, not being many, if any, generations removed from working class or impoverished backgrounds instills in us a deep-seated perseverance; an attitude encapsulated by the slogan “¡si se puede!”
In the case of my Mexican-American family, my parents grew up poor, working in the fields of the California’s Central Valley. As my dad describes in a story he likes to tell: “Teachers would ask us when school started in fall what we did over the summer. The white kids would say they went to Disneyland. I would say, ‘I worked.’”
Our pride certainly led us to downplay any problems with my mom. Our family was “successful.” Together, my parents made enough income to be considered “middle class.” Latino/a families are also very private. We don’t like to “air our dirty laundry.” Problems
Mom and I at my graduation from U.C. Berkeley in 1999.
are settled within the family. This extended to family gatherings. At times during these events, I would take it upon myself to try and help my mom socially navigate, in the hope of concealing any petulant and irrational behavior.
Attending extended family functions with her began to occur less frequently, however, as my mom’s mental health abruptly deteriorated. She’d begin accusing the family of working for the F.B.I to spy on her. She’d begin accusing my dad of trying to kill her by putting poisons in her food and drink. She’d wake up in the middle of the night and insist she heard people trying to get inside the house in order to kill her. Suggesting she see a psychiatrist just made my mom angry and hostile, and everyone more miserable.
About 3-4 years into this, into my mom exhibiting a SMI, I began to take a more direct role in trying to get help and treatment for her. By then, my parents were divorced, but still living together. My mom was unemployed and uninsured, and her psychosis was a constant. She had nowhere else to really go and my dad was reluctant to kick his high-school sweetheart out of his house. I rolled up my sleeves one summer and went to work.
Lack of health insurance was a significant barrier for us when I first tried to get her help. Indeed, it’s a problem experienced by too many Latinos/as. Until recently, 30% of Latinos/as lacked health insurance, compared to 11% of whites. That percentage has been significantly reduced, fortunately, due to the passage of the Affordable Care Act.
In 2008, however, George Bush Jr. was still president and my mom didn’t have an official diagnosis, essentially proof of a disability, we could use to apply for Medicaid.
I had little choice but to move my mom in with me in San Francisco. SF was in its early years of providing health care services to indigent, uninsured residents. I enrolled my mom and we began accessing community medical and mental health services.
Fast forward nine years later. Despite my best efforts, my mom still remains untreated. In that time, my mom has been released from hospitals against my wishes, homeless, and has developed various serious medical issues. Accessing MH outpatient services, whether community centers or county services, has proven to be entirely fruitless. Why see a psychiatrist, let alone take psychiatric meds, if you don’t believe you’re ill and believe the medicine is poison? I should mention, they won’t even see a person, unless the person makes the appointment themselves!
There are gross inadequacies and structural problems in our MH system. Nothing makes this more plainly obvious, perhaps, than the fact that our country’s largest MH treatment centers are prisons and jails. At a minimum, to address this, laws that prevent people like my mom from being effectively treated need to be amended, or ended, and the lack of psychiatric beds should be viewed for what it is, a national crisis!
More and better family education and outreach are essential too, in order to mitigate the cultural barriers that play a part in impeding Latino/a families from realizing and accepting they need help (The video above is a good example of what that looks like.). Truly universal healthcare is also a must. The last thing a family that is going through a MH crisis needs is more stress caused from excessive hospital/medical bills. Training and employing more culturally responsive and competent MH staff and psychiatrists, and expanding community MH centers/clinics, are also very important. The Latino/a mental health center we utilized in SF was a blessing in helping us finally get an official diagnosis for my mom.
I’ll advocate for these things for the rest of my life cause my mom, my family and community deserve respect and a decent quality of life.
Footnotes:
[1] Rates of mental illness are from 2014 data provided by SAMSA.
There’s always something relating to our inadequate healthcare system I could write a blog post about. Given, however, that this month, June, is my mom’s 66th birthday, I decided to give my mom more of a direct voice. My mom doesn’t know that I have a blog or do any MH advocacy work for her, so I just told her I’m interviewing her for personal reasons, to record some family history.
Took mom to “wine country” for her birthday. I had just moved her in with me in San Francisco.
I would love nothing more than my mom to be psychiatrically stable, willingly engaged in a treatment plan and able to talk openly about her serious mental illness. Instead, what follows is a person’s life that has essentially been robbed from her, in large part, due to a lack of access to adequate mental health treatment. My mom has no insight into her psychiatric illness and doesn’t even believe her physical/medical problems are severe. She’s still a person filled with aspirations, fears, accomplishments and disappointments, all the same.
Me: Given your health problems, what do you miss being able to do the most?
Mom: Just getting up and going to run an errand. Even if it’s just going to buy stamps or things that we need. I miss that a lot.
Me: Your diabetes is more stable, but are you still uninterested in taking insulin, like your doctor suggested?
Mom: I’m not interested. I had a terrible experience with it. I think the US is too sloppy with the FDA [Federal Drug Administration]. It was closed for years, not even doing their job. (My mom insists it was closed and that she used to have a newspaper clipping to prove it.)
Me: Do you actually believe you have diabetes?
Mom: I believe it’s brought on by evil spirits.
Me: How does that work exactly?
Mom: They come into your body as worms…and as minute organisms.
Me: So that’s how you got diabetes?
Mom: Yes. I was a very healthy woman.
Me: A more recent issue is your kidney issue. How’s treatment going?
Mom: I’ve had a little bit of improvement. And I’m praying for a total healing, so I’m not really worried about it.
Me: Remember that your kidney doctor said they were functioning at 16% the last time we saw him. Do you not believe they are going to get worse?
Mom: No.
Me: Are you interested in prepping for dialysis and a kidney transplant?
Mom: No.
Me: What’s going to help your kidneys improve then?
Mom: Prayer and lots of faith. Like the Lord says, “Blessed are those who have not seen, but still believe.”
Me: Do you even believe you have kidney issues?
Mom: There is some trouble, but it’s demon oriented.
Me: So, you came to live with me, initially, around 8 yrs ago in San Francisco. That didn’t workout. Around a year after you moved out, you became homeless. Where was God in that time?
Mom: He has been there, but the devils attacked our car. They wrecked into us terribly. (My mom and my uncle, her brother, were evicted from their apartment and essentially homeless, living in a car, for close to two years.)
Me: OK, but why no housing for almost two years?
Mom: Because they kept on breaking into our house whenever we would leave.
Me: [Interrupting] OK, but why would God let that happen to you?
Mom: It’s not that he allowed it. He was overwhelmed with so much work everywhere! He can’t be somewhere and anywhere at every second, like people think.
Me: Do you think you might have mental health issues that need to be addressed?
Mom: Vicki (her counselor) is on my lying list. She was supposed to visit me at home last time and was a no show.
Me: That wasn’t the question. What do you think about possibly having a mental illness? Did Dr. T (real name withheld) in SF ever diagnosis you with anything?
Mom: I don’t care about Dr T. He started out being reasonable…at first. And then it got too heavy for him. He started being influenced by the other side.
Me: Have you ever taken any psychiatric drugs?
Mom: I took what he recommended, but it made me feel drunk. (She took a small dosage of Abilify, too small to even have any real affect. The Dr. started her off at a small dosage, in order to build trust with her and reduce the side effects. Her current psychiatrist has also tried to get her to start taking a small dosage of medicine.)
Me: Anything else?
Mom: Zyprexa. I’ll take my half a pill.
Me: You need to take it every day, like the doctor said, but you don’t.
Mom: Because it was too much.
Me: OK.
Me: What do you have to say to someone that may think you have a mental illness?
Mom: What are the facts? Because I say there is “spiritual warfare” everywhere? You can go to a restaurant. You can go to a church. There are people of the dead in there. You can discern it. And sometimes they’re too nosey. And when they are too nosey, they are spying on you.
Me: Who? The devil, the government, who? I lose track of everything that you blame.
Mom: The ones who are serving the enemy, whether it be a witch, a warlock, an anti-christ, a Satanist or a devil.
Me: Is the FBI still following you?
Mom: <scoffs> They, umm…. They try to get in with the Sherriff’s office down the street or the police everywhere.
Me: So, the answer is “yes.” The FBI is still after you.
Mom: <Getting agitated.> No, I said the police! They get hoodwinked by the witchcraft and Satanists!
Me: OK. So, what are some plans/goals of yours?
Mom: To get healthier, get better. I want to see and visit my family in Bakersfield more. I want to meet religiously righteous people and make new friends.
Me: Name one thing you like about living with me.
Mom: That I get to see you more. (Aside from her brother, she was estranged from the family for years.)
Me: Name one thing you don’t like.
Mom: You don’t feed me enough.
Me: Oh brother. (She means I don’t feed her what she wants to eat enough.)
This interview misses my mom’s more charismatic, funny and caring side. But it does make clear enough how much my mom is living in an altered/delusional state. Indeed, my mom’s mental illness has worsened, due to going untreated for so long. She hasn’t always heard voices, for example, and her delusions have increasingly become more elaborate and detached from reality.
Despite her steady deterioration, experience with homelessness and repeated hospitalizations, various MH and law enforcement authorities have regularly deemed her “self-directing enough” to not warrant involuntary psychiatric treatment. Her predicament is, also, too often ignored by MH advocacy groups that prefer to focus on people that have recovered and positive stories. The MH system is broken and has denied my mom a chance at recovery and our family of appropriate healing and sufficient peace. She’s deserving of love and dignity, though, which is why I’ll never stop fighting for her. Happy Birthday, mama! (I’m taking her to Monterey, CA next week as a birthday gift. She hasn’t been there in around 15 yrs.)
As a comic book fan, I enjoy watching movies and TV series based on comic books. When they contain meaningful parallels with and/or commentary on life, I experience even more elation. Such was the case when I saw the movie Logan this past week. As a longtime fan of the X-men character Wolverine, I was enthralled by not just the acting, action and story, but the relationship between Logan and Professor Xavier as well. As a caretaker to a parent with a serious mental illness (SMI), the movie portrayed the nature of the work I, and so many others, do brilliantly and poignantly.
Being based a bit in the future from most other X-men movies, both characters are considerably older than how they are normally portrayed. Professor X is in his nineties and afflicted with a type of degenerative brain disease, perhaps Alzheimer’s. He is unable to take care of himself and, at times, due to his powerful telepathic powers going haywire, he becomes an imminent threat to others around him.
Logan giving medicine to Professor X to prevent psychosis and seizures.
Alzheimer’s isn’t technically a SMI like schizophrenia, but there are similarities. Like with schizophrenia, people with Alzheimer’s can experience delusions and psychosis. Indeed, the immense difficulty in caring for someone with such a debilitating illness is captured in the very first scene between Professor X and Logan. Their relationship in the film takes an explicit father and son quality.
In this scene, Professor X is acting out a delusion. Ranting and raving, and erratically moving around in his electric wheelchair, he doesn’t even recognize Logan, the man he personally welcomed into the X-men and nurtured for decades. No backstory needs to be given to understand that Logan is exceedingly tired and frustrated with their situation. He engages with Professor X very little. He is most intent on giving the Professor medicine to help him calm down and sleep.
Research confirms the great strain and toll. According to the National Alliance for Caregiving (NAC), for instance, 62 percent of caregivers of people with SMI reported that their jobs have made their health worse. Such possible health problems include physical ones, like chronic conditions, along with psychological, such as stress, anxiety and depression. Some caregivers even resort to substance and/or alcohol abuse. (1)
Along with battling virtually all of these problems, Logan also suffers from PTSD and suicidal thoughts. As any Wolverine fan knows, much of this can be attributed to his personal life and history. He has suffered tremendous pain and loss. Being Professor X’s caregiver should be seen as exacerbating his personal problems, however.
A large part of the strain and toll experienced by caregivers can be attributed to the hours required in doing the work. Along with regular cooking and cleaning, bathing and dressing and administering medications, there is constant monitoring of our loved one’s welfare, including through the night. There are also countless hours involved in case management and advocacy. Calls to doctors offices, figuring out health insurance rules and policies, and trying to access government services are all part of the job description. Financial stress is included and results from low pay and there being considerable unpaid labor. In 2007, the estimated value of unpaid work for caregivers was at least $375 billion. (2)
There is also the stress of dealing with our loved ones when they are agitated or in a psychotic state. This aspect is, also, portrayed succinctly and beautifully in the first scene between Logan and Professor X. The difficulty for Logan in seeing and confronting Xavier when he is in a “crazed” state is made obvious before Logan even enters his room. A friend warns Logan that the Professor is having a “bad day.”
Logan is all too familiar with the unpleasantness of seeing and hearing psychotic behavior. His face when he enters the Professor’s room says it all. He is exasperated and even a bit resentful. The first time I heard and saw my mom talk to herself, I was deeply saddened and traumatized. Several years later, I’m more accepting and better at interacting with her, but seeing and hearing her talk with herself in an acute state is still very disconcerting. And while I try not to, I can get exasperated and resentful, too. (Below is my mom having an acute episode. She often thinks she’s or a family member is in danger. She covers herself when in bed to prevent “evil spirits” from entering her body.)
There are strategies one can employ and things one absolutely shouldn’t do when a loved one is having a psychotic episode, like become angry and raise one’s voice. But frustration and impatience are inevitable, especially given the very limited social and familial support caregivers of people with SMI are given. According to NAC, more than 50 percent of caregivers feel isolated and alone. Relief or respite from duties, in our money driven society, is a luxury. Actual training for caregiving is virtually non-existent. And yes, estrangement from other family members and friends is a common phenomenon.
Logan takes place in a fictitious, dystopian world where mutants are on the verge of extinction, due to state sanctioned persecution and violence. The X-men are gone and Logan and Professor X virtually have nobody to rely on but each other. In the real world, mercenaries with robotic arms aren’t chasing us and our loved ones down, but we often feel we are forced to claw for survival for ourselves and loved ones, nonetheless. Along with having little legal recourse in getting help for my mother’s untreated SMI, I’m thoroughly fed up dealing with impersonal and unresponsive government and health care bureaucrats who make it clear, time and time again, they are pretty indifferent to our plight.
Despite the difficulty of it all, Logan’s loyalty to Professor X is unwavering. One of the underlying themes in the movie is the importance of family. Keeping Professor X safe seems to be the main reason Logan ends up not taking his own life. Interspersed in the regular feuding between them, there is obvious compassion and caring.
In a similar way, caregivers of people with SMI know that as difficult as things are, our loved ones are safer because of our commitment to them. They have already suffered too much, some of them, like my mom, spending time homeless. In the end, at least our consciences will be freed from guilt, knowing we did what we could. Finding and living in peace is a universal noble goal, after all. And it’s what my favorite comic book character is able to fortunately find by the end of the movie.
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 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.
benevolent neglect 