It has been a couple of months since my mom was denied mental health services by the county (See my last post.). I of course made phone calls and sent emails to various people and complained. An email to my Board of Supervisor got me in contact with the Director of Behavioral Health.
After communicating back and forth with the Director for a few weeks about different options, including trying to enroll my mom again into an “intensive MH program,” the Director suggested that I contact another department, the Department of Aging and Veterans Services (AVS). She said my mom could try utilizing their peer support program. A bit flabbergasted, I thought, “Are you kidding me?” Was the peer counselor supposed to help my mom “break the stigma” of mental illness and convince her to see a psychiatrist? I played along, though, figuring that by going this route, we can at least say that we did that and it did not work, in the event the county tries to deter us from MH services again.
I ended up talking to Jill, a supervisor, at AVS. Jill was empathetic and responsive when I explained to her my mother’s history and the current situation. She stated explicitly, however, that she was not sure what her program could do for my mom. She said that they do not focus on mental health and, to the degree that they deal with people with mental health problems at all, they are people with low level anxiety and/or depression. At this point, I just felt like Madelyn was giving me the run around intentionally. She was set to retire sometime in August and I figured this was her way to avoid dealing with me until then.
Regardless, Jill genuinely expressed a desire to help. We made plans for a clinician to visit my mom in our home the following week. It was not entirely clear what the clinician would be exactly doing, but regardless, I figured I could request that they help me/us access MH services at some point in the process.
As with any appointment regarding my mom’s health, I was somewhat worried how it would go. I waited till the day before to tell my mom about the planned visit with the clinician. The less time she has dwelling about things, the better. And even though she said she was fine with it, I knew anything could happen the actual day of. She had recently walked out of two appointments, one being with a Gastroenterologist and another for a MRI.
Vinnie, the clinician, appeared to be in her early thirties. I could not help but wonder how long Vinnie had been working with the county and what kind of formal training and/or education she had. I was hoping she would be skilled enough to work with my mom.
She impressed me relatively quickly. She was very warm, assuring and friendly. Within fifteen minutes of talking with my mom, my mom opened up to her about some of the hardship she has endured in her recent past. Car accidents, falls, being estranged from her family, medical abuse–She mentioned various things she did experience, like the car accidents, but also things she did not experience, like a nurse dressed in black trying to poison her at a hospital. Vinnie listened to her attentively, regardless of any personal doubts she may have had about the accuracy of my mom’s accounts. This naturally helped build trust between Vinnie and my mom.
Towards the end of what was a short, initial visit, Vinnie explained to us that the specific program she was a part of was called “Project Hope.” As part of the program, she would make eight visits, one per week, to spend time socializing with my mom and in order to help my mom create personal goals and a plan for achieving them. “OK fine,” I thought. I could use some help with my mom in those areas. My mom was disinterested in many social outings I have suggested and just the company with another person would be good.
During Vinnie’s second visit, she would mention what I was hoping would come out of the process. She said that she thought it would be a good idea for my mom to return to “Senior Access” for an evaluation. Without mentioning the mental health component explicitly, she said they could offer a team of support people to help my mom deal with her medical and emotional needs. That is how I have explained it to my mom all along. I have avoided the word “psychiatrist” and think it should be avoided as much as possible. My mom did not refuse or resist the idea, to my relief.
So for now, this is where we stand. My mom is enjoying Vinnie’s visits. My mom considers her a friend and looks forward to their time together. During Vinnie’s third visit this past week they swapped cooking recipes and Vinnie talked with my mom about utilizing some Senior community resources. Our appointment, our second attempt, to gain access to MH services is in a couple of weeks.
My mom has been living with me six months now and we are really no step closer to having her psychiatric illness treated. I am of course hoping for the best, but know by now not to expect quick, effective results, if any results at all. Ideally, she needs daily monitoring, counseling and treatment, the kind only available in a hospital and/or treatment facility setting. The alternative is to do nothing, however, but accept the injustice and cruelty the system afflicts on the both of us. I refuse to live like that, though. I learned that from my mother.
For three months, I had been waiting to enroll my mom into a county mental health program. I wanted to do it much sooner, but we had to wait for my mom’s Medi-Cal to officially transfer from another county. Dealing with slow government bureaucracy has been a constant frustration.
The program is coordinated, intensive outpatient treatment, typically referred to as a Full Service Partnership (FSP) in California. I didn’t have a lot of faith in the program, since outpatient treatment has never proven successful for my mom in the past. At most, I was hoping we’d get lucky with a decent treatment team and I could get some help in coordinating and monitoring her various physical/medical needs.
As it turned out, we wouldn’t even get our feet in the door. My mom would be outright rejected at the assessment. After about forty minutes of questions pertaining to personal and family medical history, the clinician suddenly asked my mom if she had a mental illness AND whether or not she wanted to access county MH services. Flabbergasted, I thought “What the hell?! Surely this MH worker knows that there are people with mental illness that don’t believe they’re ill!”
Predictably, my mom became agitated and, as she is prone to do, started talking openly about how her spiritual visitations are real. After a few minutes listening to my mom and trying to calm her down, I asked the clinician as to why she would ask my mom those questions. She responded by referring to the notion of “informed consent” (i.e. voluntarily agreeing) and how that requires her to be completely truthful to my mom about what they do. She then went on to explicitly say that she cannot enroll my mom into the program, unless my mom answers in the affirmative to those questions.
I was furious, but in as calm a manner as I could, I expressed my immense disappointment with her approach. Among other things, I told her if that was county policy, it was misguided and that there are more tactful, sensitive ways to try and help people like my mom. I walked out a minute after, as she continued to ask my mom questions and fill out forms.
Just more damning proof of how the MH system is setup to deny the most seriously mentally ill help, I thought. It hasn’t always been this way.
In 1963, President Kennedy asked Congress to spend $3 billion to replace state hospitals with a network of community mental health centers. The development of more effective anti-psychotic drugs seemingly made it possible for patients to return to their communities.
However, for nearly twenty years, no change occurred, due to political circumstances and events such as President Kennedy’s assassination. In the 1980s, though, numerous lawsuits against patient abuse in state hospitals became common. In response, courts passed a flurry of patients’ rights laws. Compared to before, it became exceedingly difficult to involuntarily hospitalize somebody. This negative publicity was all increasingly cash strapped state governments needed. They began to close state hospitals and discharge patients.
Patients’ rights advocates declared victory for what was being called “deinstitutionalization.” Fast forward some near thirty years later, though, and the money for community centers that were supposed to replace state hospitals has never materialized. Consequently, instead of adequate treatment, too many people who suffer from mental illness end up homeless, incarcerated or prematurely dead. This largely occurs due to the difficulty of being able to involuntarily hospitalize someone; but also because the psychiatric hospitals that remain are inadequately staffed and funded.
Despite the high economic and social costs this generates, the MH system is vehemently defended by various interests and groups, from directors in government on down to health care and social work professionals, to patients’ rights groups and many consumers themselves. Their political zeal in defending the status quo is matched by their ideological commitment to civil libertarianism, a view that prioritizes maximum freedom for the individual. In the MH system, this means that inadequate or no treatment at all for people with a serious mental illness is justified in terms of “freedom of choice” and “personal agency.”
I was reminded of this when my mom was hospitalized last December for congestive heart failure complications. I met with the hospital social worker to get more information on assistance in finding a residential care facility for my mom, in case we needed it. As those conversations tend to go, I brought up my frustration with inadequate care and treatment from the MH system. While expressing genuine sympathy to my family’s plight, the social worker didn’t mince words when she said that my mother had a right to refuse treatment. She went so far as to ask me what my mother wanted to do. I said what I usually say when I hear this: “She doesn’t want to take psychiatric medicine, but she wants to be with her family. We can’t live with her, unless she is stabilized, though.”
The ridiculous irony in what happened at the assessment makes the indictment of the MH system all the more clear. Setup, ostensibly, to respect and protect the rights and freedom of people, my mom was denied county MH services, which both her and I pay taxes for, because she is too sick to acknowledge she has a serious psychiatric illness. Her Right to health services was denied because she isn’t able to understand and reason sufficiently enough. This is the same system that in the past has deemed my mother in court to be mentally incompetent and in need of a conservatorship, due to her mental illness (Yes, I’ve been her conservator. That was a failure and a waste of thousands of dollars for me.). My mother’s health hasn’t improved since then. It has gotten remarkably worse!
Apparently, however, the clinician didn’t handle the assessment “appropriately.” Both the office manager and Director of Behavioral Health, whom I contacted out of my indignation, affirmed to me that a person does not in fact have to admit or accept they have a mental illness to access county MH services. While they assured me that they would help us if we decided to return to access services, I’m now wondering what their quality of services are like. Are other county MH workers as poorly trained or as bad at their jobs?
I also don’t buy that it was just a lack of judgment, frankly. The extreme commitment to civil libertarianism permeates every corner of the MH field. As the office manager admitted, the clinician was trained in an actual MH program at a school. In other words, she was taught and trained by people committed to this philosophy and in strategies and treatments that are by and large woefully inadequate for the most seriously ill. If poor judgment played a part, ideological purism helped cloud it.
I’ll eventually try and persuade my mother to try and enroll again. I have no delusions, however, that she needs and deserves quality treatment in a psychiatric hospital or facility with compassionate, responsive staff and doctors committed to making her as whole as possible again.
(This is a political article I wrote days before the CA primary. There was so much I could get into just about CA government and society. I focused on some laws/policies that had national relevance, though.)
The presidential primaries have put a spotlight on healthcare, mass incarceration and increasing poverty in the U.S. A related issue isn’t receiving adequate attention, however. That being insufficient access to mental healthcare treatment for people who have a serious mental illness (SMI).
According to NAMI, 1 in 4 adults– approximately, 58 million Americans– lives with a mental health disorder in any given year. 1 in 17 lives with a SMI such as schizophrenia or bipolar disorder I. If not treated effectively, SMI is oftentimes severely debilitating. It can lead to joblessness, homelessness, poverty, incarceration and even the premature loss of life.
This reality has been exacerbated the last few decades as state hospitals and treatment centers have closed and healthcare costs have skyrocketed. For example, in 1955, there was 1 psychiatric bed for every 300 Americans. In 2010, there was 1 psychiatric bed for every 7,100 Americas. According to a recent report released by the Treatment Advocacy Center (TAC), only 3.5% of the state hospital beds that existed in 1955 were still in operation by the first quarter of 2016.
In California, the situation is particularly stark. According to a 2012 TAC report, the state eliminated 16 percent of its beds between 2005 and 2010, leaving just 14.2 public psychiatric beds per 100,000 people – far below the 50-bed standard considered necessary to provide minimally adequate mental health treatment. In 25 counties in the state, there were no psychiatric beds at all.
For too many people with SMI, jails and prisons become their homes and treatment centers. In 2007, 19 percent of CA state prisoners were mentally ill. By 2012, 25 percent were. Given that people with SMI often suffer from severe delusions and hallucinations, conditions in jails and prisons, which can include periods of solitary confinement and/or abuse from guards, can end up making an inmate’s psychosis worse, thus reducing the chance for successful recovery.
This abysmal situation in CA persists, despite increased national attention on people with SMI. With presidential campaigning in CA underway, it’s worth looking at what, if anything, the candidates propose to do for SMI treatment and care.
Like healthcare in general, for people with SMI, access to mental healthcare largely depends on coverage, funding and parity laws that prevent discrimination. On these issues, it’s pretty clear that both Democratic candidates, Bernie Sanders and Hillary Clinton, take better positions than the Republican frontrunner, Donald Trump.
Both Clinton and Sanders want to expand healthcare coverage to more Americans. This would undoubtedly benefit people with SMI, since many are poor and unemployed and suffer from concurrent medical/physical ailments that require attention, treatment and monitoring. Both also have expressed support for helping people with substance abuse problems when talking about people with mental illness.
In comparison, Trump is vague when speaking about his healthcare policies, but his website lists ideas that are consistent with economic conservatism. Trump wants to eliminate Obamacare and incentivize competition between insurance and pharmaceutical companies. On mental health specifically, his website just states the need for eliminating privacy laws that prevent family members from receiving information about their sick loved one’s condition and care. While a worthwhile idea, overall, his views, if implemented, would leave too many people with SMI remaining uninsured and vulnerable to the ongoing predations of profit driven corporations.
Regarding parity laws, both Sanders and Clinton support President Obama’s landmark law banning discrimination in treatment against people with mental illness. Seven years after the law was passed, however, recent research shows that insurance companies are still finding ways to deny or stall treatment. Lax enforcement of the law is partly to blame and both candidates, presumably, would support increased and robust enforcement. They have failed, however, to emphasize this or call on President Obama to do so. If prodded, Sanders would probably point to this behavior by insurance companies as more reason to institute single-payer healthcare, as part of his call for a “revolution in mental health.”
Most relevant of all to the gross shortage of psychiatric hospitals and treatment centers is the Institutes for Mental Disease (IMD) exclusion. Instituted in 1965, the IMD places severe limits on Medicaid expenditures that would go towards psychiatric facilities and substance abuse centers. Consequently, this has contributed to facility closures and increased the incentive for states to send psychotic patients and/or patients with addiction problems to regular hospitals, in order to be at least partially reimbursed by Medicaid. This does little to nothing to address one’s psychiatric illness and leaves patients at the mercy of an already under-resourced hospital and overworked hospital staff.
Repealing the IMD would definitely be welcomed by many states and family members of people with SMI. In the least, presidential candidates who claim to have the best interest of the mentally ill and disadvantaged in mind should be mentioning the nature and extent of the problem. After all, to do nothing or continue to do too little has proven to be economically wasteful, politically wrongheaded and societally inhumane. Who will be the first candidate to take up the call?
Living with my mom this past month has me again thinking about the legal barriers involved in involuntary hospitalizations, the legal/medical notion of “gravely disabled” and the larger politics in the mental health system.
I say again because for the last 6 to 7 years my mom’s unwillingness and inability to seek treatment for her serious mental illness have on numerous occasions forced me and my sister to try and get her involuntarily hospitalized, what’s known legally in California as a 51/50. As my family has learned, however, getting my mom 51/50ed AND treated (i.e. stabilized) is virtually impossible. For one, the legal requirement is ridiculously high and various “checks and balances”, or roadblocks, are embedded throughout the entire process that limit the chances for successful treatment.
Legally speaking, a person must meet one of three criterion to be 51/50ed. A person must be suicidal, a serious threat to someone else or “gravely disabled.” If an authority figure, like a police officer or field clinician, deems a person meets one of these criteria, then the person is sent to an inpatient facility, usually a county public hospital. Once there, the person is assessed by a psychiatrist. If deemed necessary, treatment with medication is attempted. If the person is non-compliant, as is usually the case with someone who has a serious mental illness (Why take the medicine if you believe it is poison and can kill you?), the person may be held for an extended period of time in order to treat him or her, with coercion if necessary (Research shows that most patients end up taking medicine voluntarily.).
The tending psychiatrist, though, can decide at any point that the person doesn’t fit the criteria for being involuntarily hospitalized. There is also judicial involvement. At different intervals, a judge decides how long and whether or not the person can be held or continue to be held against their will. So essentially, it’s possible for a judge to overrule both the tending psychiatrist and the law enforcement officer or field clinician that had the person initially 51/50ed.
In my mom’s case, she has been 51/50ed at least four times in the last 6-7 years. Two of those times, she was found confused and incoherent on the side of a road in her car by police officers. At the time, she’d regularly drive off in her car in a psychotic episode, usually because she believed she was in grave danger. The two other times, she was failing to treat her diabetes adequately. Her glucose, consequently, rose above 400, which is considered life threatening. A field team that I called deemed her a threat to herself because she didn’t believe the readings, and was saying that she actually didn’t have diabetes at all.
Each time, however, and despite my pleas for them to treat her, she was released by the hospital in under 24 hours for no longer meeting the 51/50 criteria and without taking any psychiatric medication. It became obvious that hospital personnel were taking much of what my mom was saying during their questioning at face value. My mom can “hold it together” decently when she has to and she learned very quickly how to answer their questions. “Are you suicidal?” “No.” “Are you hearing voices?” “No.” “Will you begin treating your diabetes adequately?” “Yes.” In a conversation I once had with the tending psychiatrist at San Francisco General Hospital, he explained to me that he wanted to treat her, but based on the case he could build, he believed the judge would decide to release her. He decided to himself on that basis.
These 51/50s all happened within a three year time period, between 2008 and 2011. In this same period, my mom’s housing was becoming more precarious. She would regularly get into conflict with her neighbors and/or property managers over various things, like accusing her neighbors of spying on her and even breaking into her apartment. Like clockwork, she would eventually be evicted, often times within months of finding a new place. Starting in 2012, my mom became effectively homeless, living in a car. I thought with certainty that her being homeless would strengthen the case for involuntary treatment on the basis of her meeting the “gravely disabled” criterion. In fact, I was told by the psychiatrist at SFGH that if she was homeless, he would have had a stronger case to argue in front of the judge. At that time, my mom was staying with her brother, so had a home to return to. Her being actually homeless, however, wouldn’t matter much. In fact, it didn’t matter at all.
The California state code sounds pretty straight forward. It states a person is considered gravely disabled when “The person’s mental condition prevents him/her from being able to provide food, clothing and/or shelter…” In another section, it reads “This does not necessarily mean homeless, as a homeless person who is able to seek housing (even in a temporary shelter) when weather demands it would not fall into this category.” Each of these sections would be grossly distorted by authorities countless times.
My mom’s health and safety were in regular jeopardy when she was homeless. Her physical health suffered greatly, undermined as it was by the malnourishment, lack of rest and sleep and increased stress that accompanied her condition. She would at times show up at my home in San Francisco or my sister’s home in Fresno unannounced, weak, tired and distressed. We would let her stay to rest and often use the opportunity to call authorities to conduct a “welfare check” on my mom. The police and ambulance would show up and, while my mom would be assessed by the medics, we would request that the police initiate a 51/50. While not in an obvious acute psychotic state, we’d explain to them her history of not treating her psychiatric condition, her prior 51/50s and current state of homelessness. Knowing the exact wording of the state code, we’d say explicitly that she was homeless and unable to care for herself adequately, due to her psychiatric illness. We’d try multiple times, hoping a different police officer would prove more helpful. However, as if reciting from the same department briefing, they all would say almost verbatim that to be considered “gravely disabled”, a person has to be lying down on the railroad tracks, in their own defecation, naked!
Over time, it became clear to me in talking to various mental health personnel that this extreme interpretation of “gravely disabled” was actually the official view in the mental health field. Once, a county social worker, who was part of a field clinician team, told me that “technically, a car is adequate shelter.” Another social worker another time told me that as long as a homeless person is able to put a plan together, a plan consisting of where they are going to eat and sleep, that person wasn’t gravely disabled. Of course, my mom would lie and make it sound like she did have a plan. Her deteriorating state and past history of self-neglect weren’t factors whatsoever! The fact that she had an untreated serious mental illness was a non-factor! The fact that she was immensely suffering was a non-factor! Whether in the hospital or out, MH workers and law enforcement instead took her just at her word.
I don’t doubt that the interpretation of “gravely disabled” has become more extreme as funding and resources, i.e. beds, for treatment centers have been increasingly cut. Yes, obviously there needs to be safeguards and civil rights protections. But as with my mom’s situation and countless others, the reality is this: People with serious mental illness are being unjustly neglected, unless they do something criminally and/or ghastly wrong. It should never have to reach that point for most.
At this point, having my mom assessed for a possible 51/50 isn’t even an option really. It has proven pointless and would just cause unnecessary stress for us both. I feel this way, despite seeing my mom on a daily basis continue to suffer from severe delusions and hallucinations. What she calls “spiritual attacks” are pretty constant and rare is the night that she is able to sleep soundly. She spends a good portion of the day and night rebuking and even swearing at the “evil voices” that torment her and that she blames for causing her pain in different parts of her body. She even says that they try to make her trip and fall. This makes day to day tasks and business immensely difficult for her to accomplish. She’ll forget things that I say or ask her to do. She won’t remember to take her medicine regularly for various physical ailments, unless I remind her. And just about everything needs to be negotiated with her, from when to run errands to what we are going to have to eat, since she relies on the “good voices” to tell her what she should do. This is on top of her severe physical limitations that have developed, due to inadequate self-care, unstable housing and stress. My mom should be in a hospital or treatment center, until stabilized, so she has a better chance at piecing her life back together.
This week marks a month since my mom moved in with me. I knew it’d be challenging. In actuality, it has been damn near overwhelming. On top of being her caretaker seven days a week, I also play the role of counselor, social worker, case manager, advocate and her main peer and family support person. I’ve spent countless hours just being on the phone looking for doctors and dealing with our infamous, impersonal government bureaucracy in trying to get her Medi-Cal case transferred. After some initial problems with finding a clinic or doctor (Many are not accepting new patients, due to the increase in insured people from Obamacare.), I was finally able to find a doctor by searching the Internet. That was a crapshoot because there is no website that lists doctors that accept straight Medi-Cal. And even though a site may state the clinic or doctor accepts it, you don’t actually find out whether or not they accept it until you call.
Interpersonally, challenges abound also. I’ve been trying to bond and build trust with my mom. That has been made exceedingly difficult, though, due to her hallucinations and delusions. These affect her moods, comprehension ability, level of social engagement and just her ability to have a conversation with me. In my estimation, she hears voices around 80% of the time.
As is common with people who have a serious mental illness and hear voices, the voices can vary in the emotions and associations they arouse. Put simply, there are “good” voices and “bad” voices. For my mom, they take a religious form. There are “godly” voices and “evil” voices. The godly voices look out for her and protect her, she says. They can be biblical figures/prophets, while the evil voices can be evil spirits or witches. The evil voices torment my mom by telling her various things like they want to kill her, that she is getting ugly and old and even sexual things. Some days, my mother physically struggles with fatigue, weakness and/or nausea. On days like these, she says the evil spirits and witches are to blame. The voices tell her that they made her sick by spoiling her food or drink and entering her body.
When the evil voices are afflicting her, the godly voices do battle with them. They tell her what to say or do to cast the evil voices/spirits away or vanquish them. At more acute times, this can take a quite animated, even disconcerting form, with my mom talking loudly, sometimes swearing, while walking into different rooms and opening doors around the house. “Get out! Get out!” she will say. She calls this “spiritual warfare.” Some nights, this limits her sleeping to just four or five hours.
When she is agitated, I do my best to assure her and calm her down. I’ll pray with her or sage her room and the house. Though sometimes, I’ll just keep an eye on her and won’t engage with her verbally, because I’m busy or not in the mood to deal or I’m just trying to recharge with sleep. If she was more physically capable, I’d be concerned about her wandering outside and causing problems with neighbors, as she has done in the past. For now, that hasn’t been a problem, fortunately.
When hallucinating and when the evil voices aren’t present, she is listening to and conversing with the godly voices. From what I can tell, my mom enjoys engaging with them. It provides euphoria and self-worth. How could it not, speaking with an anointed voice sent by God? This is pretty typical, according to the literature on serious mental illness (SMI). People who hear voices often times willingly engage and interact with them. It can get to the point to where the person will ask or take the advice of the voices around mundane things, like what to buy or eat.
In Walmart recently, this led to a quarrel between my mom and I. They didn’t have her size in the pants she liked. The good voices, she said, told her that her size would be there the next day. Tired and exasperated, I told her that we didn’t have time to drive across town the next day, despite her insistence. As it is, she often wants to return things days after buying them because they end up “fitting funny” or she doesn’t remember buying them. Just this past week, it took me three days to convince my mom why choosing a Medi-Cal managed network plan was the better choice compared to straight Medi-Cal. The godly voices were telling her that Medi-Cal was the safer bet and better option, despite my best and repeated attempts to explain that the network gave us more options and that it was a bit of a moot point anyways, because she will be on Medicare in a couple of months when she turns 65.
It’s not my mom’s fault she behaves this way or believes the things she does. The illness has progressed, due to her not receiving successful treatment. She hasn’t always heard voices, for example. While she has been exhibiting a SMI for more than ten years, she started hearing voices around five years ago. I understand the road to recovery is long and hard, regardless. But I’m already somewhat questioning my decision and fortitude in taking her in. The books I’ve read on living and helping someone with a SMI give good advice, but are geared towards wealthy people. At least I like telling myself that anyways. Take time off from caretaking and seek adequate self-care? Ha! I’ll just pay for some help with my dwindling savings! Do my best to see and prevent a potential psychotic episode? Ha! The person the author has in mind must already be in treatment and taking meds. How nice it must be to afford a good psychiatrist!
I’m determined to see it through, though. What I’m going through pales in comparison to what my mom has had to live with. Thinking her family abandoned her and such. To heck with the mental healthcare system, I ultimately conclude. Tomorrow is another day to live, breathe and try and enjoy, for both of us.
It has been almost two months since our horrible experience with the hospital. And as has usually been the case for too many years now, another crisis came right on the heels of the previous one. This time, it took the form of my mom and uncle having to leave the house in which they were renting a room in on short notice. Unexpectedly, they were told by the owner that the house was going into foreclosure and that they had to leave in two weeks. They had never signed a lease, so had no rights to exercise. With nowhere else to go, my mom and uncle began staying in a motel when the two weeks expired.
This took place in the context of her health being poor and compromised from the lung infection that she was hospitalized for. Just walking was an immense struggle for her. I knew that the added stress of trying to find new housing wouldn’t be good for her, either. My concern and frustration were exacerbated by typical unresponsiveness from the county.
A day after my mom was unethically wheeled out of the hospital, I had called and talked to the Deputy Director of the Kern County Mental Health Department to inform him about what happened and to ask for assistance with my mom. Specifically, I asked about a new program the county had recently approved called Assisted Outpatient Treatment (AOT). Basically, it’s court-ordered outpatient care. I’ve read about it and know there are mixed opinions and evidence about its effectiveness. I also know there are serious ethical concerns about the coercion aspect. I sympathize with some of them, but I also know from experience that a degree of coercion can work with my mom.
The message from the court/county basically would be “Take your medication and adhere to treatment or you’ll end up being involuntarily hospitalized.” I happen to believe that my mom partly takes her diabetic medication, due, in part, to her past experience of being involuntary hospitalized for high glucose. She knows that a lower glucose number keeps the authorities away. Her being in the program would also take the focus off of me as “the bad guy” responsible for trying to get her to treat her serious mental illness. We could then form a partnership around the goal of keeping her out of the hospital, instead.
The bureaucracy reared its ugly head almost immediately, however. I received a call the next day from someone with the county, the Family Advocacy Office, who didn’t seem thrilled I had talked to the Deputy Director. It was as if as she couldn’t be bothered. She asked me how I learned about the AOT program. Kern County isn’t actively publicizing it. I just knew it was approved by the county last October, by doing a Google search, and called the Director to see where it was in the implementation process. It can take some inveigling or persuasiveness, but I learned a long time ago that it’s just best to talk to the Directors when you want some solid information and assistance. While she might not have liked my persistence, she did her job and took information down for what she explained was the beginning of the process for getting someone in the program. She also explained what seems pretty typical for AOT programs, regardless of where they are being utilized, at least in California. Initially, they give the person who is being considered for the program thirty days to voluntarily seek and adhere to outpatient treatment. If the person fails to find and adhere to treatment at that time, the case goes before a judge for potential mandating of service.
I was of course hoping that the process could be expedited, given my mom’s situation and condition. I knew she could easily end up back in a hospital relatively soon again, given her poor condition. As far as I was concerned, I thought my mom’s condition and the situation were such that she should be involuntarily hospitalized for her psychiatric condition. While I knew I could request an assessment, like I wanted done at the hospital, I also knew that they probably wouldn’t 51/50 her. The criterion she would have to fit was that of “gravely disabled.” Basically, that refers to someone who isn’t able to adequately provide shelter, clothing, and/or medical care for themselves, as a result of their psychiatric illness. It’s interpreted very narrowly, though. As multiple police officers have told me–as if they’re reading from the same department memo–a person essentially has to be lying down naked on railroad tracks, covered in their own excrement. I decided to spare my mom the indignation of an assessment by and potential conflict with the police.
About two days later, a supervisor called me from an Adult Aging department and told me they were sending out a field team to meet with my mom. After some questioning, I found out that this was part of the initial thirty-day assessment. He didn’t tell me that right away, for some reason. I was confused and thought the plan was changed. The lack of information government workers and bureaucrats can give about mental health options and processes never ceases to amaze me. Too many govt. workers just go through the motions. Anyways, the team, consisting of a counselor and social worker, were set to meet with my mom to assess her and try to convince her to see a psychiatrist. It turned out that it was the same team who had been in contact with my mom before, around six months prior, just after one of her many prior hospitalizations.
To no surprise to me, when talking to the counselor on the phone after their home visitation, the counselor expressed that my mother, in her view, was borderline “gravely disabled.” After informing her of my mom’s precarious living situation, she said it’d probably make the most sense to try to convince my mom to admit herself into a hospital, and from there, to try and get her into some kind of assisted living situation. I agreed with her, at least in the short-term. I conveyed to her if we ever got to that point, my mom would eventually leave the facility of her own accord. As has been explained to me various times in the past, and as the counselor knew, no assisted living facility would try to keep her there against her will, if they aren’t legally obligated to do so.
Two weeks passed, and the counselor stopped returning my phone calls. It was similar with the supervisor and Deputy Director. On the advice of a representative from the Family Advocacy office, I went in person to the Department of Mental Health to find out what was going on. She suspected they had stopped talking to me, due to patient’s privacy laws. It turned out that wasn’t the case. My mom, of her own accord, listed me as someone they could share information with when she was being seen by them previously.
As it turned out, the counselor had taken a medical leave of absence. Nobody was following up with her messages and/or cases, apparently, and for some reason, the supervisor and Director couldn’t be bothered. Another counselor I ended up meeting with was nice enough and assured me that they would follow through with my mom. We agreed on a tentative plan to try and get my mom to see a psychiatrist again. Around three weeks have passed since that visit/conversation, and my mom has received little follow up. Without my constant advocacy, I seriously doubt the county would follow through with getting her into AOT at all. Given this, I’ve decided to move my mother in with me in Modesto, CA. The county, Stanislaus, doesn’t have AOT, but their services seem OK. They make home visits and integrate medical and psychiatric care. That’s uncommon. Thus, a new chapter in our lives begins….
I thought I’d give some personal background information about my mom. It’s easy to just think and write about her in her current condition, as someone severely disabled by a serious mental illness (SMI), and ignore or lose sight of who she was before her illness gained its debilitating grip. I actually wanted to make a photo essay of sorts, but am having trouble locating early pictures of her. They could be in boxes or could be lost. We, unfortunately, have lost a lot of her personal possessions during this ordeal.
My mother was born in the early 1950s in Fresno, Ca., the youngest of eight children. (An older sister died of pneumonia as an infant. Including her, it’s nine.) Her parents, my grandparents, immigrated from Mexico and, like so many Mexican immigrants to California, made their living as farm workers in the Central Valley. For my mom and her siblings, this would mean growing up and missing significant periods of time of school in order to work in the fields. This occurred mainly before Cesar Chavez led the farm workers’ movement for better pay and working conditions. Essentially then, my mom grew up in poverty and at a time of great inequality and discrimination against the immigrant, farm worker and Mexican-American communities. Several of my mom’s siblings didn’t finish high school, due to these conditions. My mom, fortunately, did graduate high school and it was there she met my dad.
My dad was drafted into the Army during the Vietnam War in the late 1960s. A few years after his tour ended, he married my mom in a big, fancy wedding. Both were fortunate enough to find stable and good paying jobs early in their adult lives. My dad would work for more than thirty years with a utility company and my mom would work more than fifteen with the State of CA. Within four years of marriage, my parents would have two children, me and my sister. Hard working, my mom still made time to play an active role in our education. With mine, in particular, I remember her being a strong supporter of and advocate in both my academic and sports lives. During high school, she intervened several times when I wasn’t performing well academically. I had several meetings with her and my counselors. When she felt baseball coaches were playing favorites too much with players, at the expense of my playing time and that of others, my mom questioned the coaches about it at a parents meeting. Other parents thanked her for it after. She also was president of my high school’s Mexican-American cultural club.
My mom beamed with joy when I received my BA and then my MA degree. It was only a few years after that, though, that my mom would start showing glaring signs of her serious mental illness. By then, my parents were divorced and my mom was laid-off from her job. I haven’t been able to spend much quality time, as a mature adult, with my mom. Her mind is fractured, not unlike a glass window or mirror. I still see many of her positive attributes many times, notwithstanding. She’s kind, intelligent, funny, curious about the world and is as articulate a person as I’ve ever known. Someday, I hope my sister, our extended family and my mom’s friends can sit and laugh together again like we used to, before her illness took over.
(The name of the hospital has been omitted and names of the employees not used or changed, due to legal implications.)
Stunned. Disgusted. Outraged. Sad. These were some of the different emotions I felt a little over two weeks ago when my mom was allowed to leave a hospital against my objections, and despite her being in an obvious psychotic state and not medically stable or cleared. I already knew that the mentally ill often receive grossly inadequate care at hospitals. I never imagined it would happen right in front of me.
My mom, initially, was admitted for breathing complications and slurred, incoherent speech. Upon arriving, she was sedated and put on a breathing respirator. She would be in the hospital a total of six days. I arrived on the third day, Christmas Day. The nice facilities, spacious rooms and uncrowded intensive care unit told me right away that my mom was in a private hospital. Many members of the staff were young, seemingly in their twenties and thirties. One of the nurses, who began training in the ICU that very week, told me she was a recent graduate from Bakersfield State College. Her inexperience showed a bit in her demeanor as she lacked the level of empathy and friendliness the rest of the nurses showed. Overall though, for most of the stay, the staff treated my mom well and readily answered my questions and concerns, of which there were many. I did wonder how or for how long her Medi-Cal was going to pay for this private hospital and knew there would be some wrangling over her discharge. There always is. Hospitals want indigent patients out as quickly as possible. This can lead to premature or inadequate discharges, as it has in the past with my mom. But for the most part, I was being appreciative of the reduced stress the hospital was providing.
The quality of care dropped precipitously, though, on the sixth day. Beginning around 4:00 that afternoon, and over the course of several hours, my mom would become increasingly hostile and agitated. Eventually, she would become fully non-compliant with her medical treatment and, though still weak and unable to stand or walk, would try getting up from her hospital bed to leave the hospital. She, in fact, would start stating that she wasn’t in a real hospital. Almost immediately upon my mom showing an acute psychiatric episode, the hospital staff, particularly the administration, showed little to no desire to help me or my frail, sixty-four year old mother.
To her credit, the attending nurse, “Danny,” initially attempted to reassure my mom and keep her calm. Granted, my mom wasn’t in her fully agitated state yet, but “Danny” nonetheless demonstrated a great amount of patience with my mom for around the first hour of this ordeal. My mom’s IV catheter had to be moved, due to swelling in her hand and some clogging this was causing in the line. My mom’s veins are small and, to her misfortune, it can take a number of pokes with a needle to find one successfully. In this situation, it took four pokes for them to find a vein. It actually took another attendant, “Johnny,” who worked in the emergency wing of the hospital and who was renowned for finding veins, to accomplish this. My mom complained about the multiple pokes, understandably, but she largely cooperated, despite her saying “no” to the procedure a couple of times. She was seemingly put at ease with “Johnny’s” assurance that he used to work in prisons and always showed his patients the utmost care. He actually promised he would find a vein on his first try. “Danny” and I were greatly relieved when he did.
That would be the extent of my mom’s cooperation, though. She began refusing any other treatment or tests. Even though she allowed the IV catheter to be put in, she refused the attachment of the IV line. While I talked to her and distracted her, “Danny” hooked it up anyways. Next, it was time to check her glucose and to give her insulin. My mom is a diabetic and her glucose was exceedingly high when she was admitted. She refused the glucose test, but “Danny” quickly poked her finger to draw blood anyways when, again, I was talking to and distracting her. The insulin is more challenging to administer, requiring as it does seconds to inject, and once my mom said “no,” “Danny” didn’t even bother trying.
At that point, I feel we were essentially abandoned by the hospital staff. My mom would become more agitated and hostile. She began accusing the hospital staff of stealing money from her and general maltreatment. She repeatedly would say her lunch that day, her first solid meal since being admitted, was lousy and that it made her feel sick. She also began to try and remove various pieces of equipment from her body, including the IV catheter. She began stating she wanted to leave and go home, and demanding that I take her. All this went on for more than an hour. I did what I could to reassure her and keep her calm and, at various times, I physically prevented her from removing her chest sensors and messing with her IV catheter. But ultimately, I wasn’t successful.
“Danny” came in a couple of times to reset some monitors that would start beeping incessantly from my mom messing with the equipment, but that was pretty much the extent of her presence at that point. Another nurse came in to try and discourage my mom from removing her chest sensors, but that attempt didn’t last more than fifteen seconds. I walked out of the room a couple of times to update “Danny,” but I couldn’t leave my mom for long, due to her trying to pull out the IV. At about 6:00 pm, when I wasn’t directly watching her, my mom managed to pull out a part of her IV catheter. She began bleeding and was in good deal of discomfort. The tip had been bent. An alarm sounded, but after around twenty seconds and nobody seemingly coming in to help or check in, I pulled it out for her.
After I told “Danny” what my mom did, she came in to help me clean up the blood and then left. She still managed to be pleasant, but not helpful. Her shift was close to ending, so I know that factored into her lack of attentiveness and care. Still, for more than an hour, there literally was no guidance or advice for me and no counseling or support for my mom. Were there other nurses that could help or intervene? Where were the supervisors? Normally, who counsels patients when they start being unruly? The hospital was a Christian hospital and they had chaplains — was there a role they could play? The doctors were hardly seen. They made rounds, but I hadn’t seen a doctor come by for my mom since the morning. Private hospital or not, the seeming unpreparedness and lack of support was inexcusable. My mom’s room was directly in front of the administrative area, not even 20 feet away. There’s no way the supervisor(s) didn’t know what was going on.
At that point, I made the decision to call Kern County’s mental health crisis hotline to receive advice and information about what I could do. Even though I wasn’t told so by anyone at the hospital, I knew the hospital probably had a psychiatrist that could do an evaluation, which includes an assessment for a 51/50 hold. In California, that legally allows a person to be hospitalized and treated against their will, if the person is deemed a danger to himself/herself or others. I wasn’t certain that the psychiatrist would deem my mom a threat to herself. I just wanted the assessment done anyways, in the hope that she would be. If there were more and better options, I wanted that information too before I talked with the staff. I left my mom’s ICU room and made the call from the waiting room outside the unit. The person from the crisis hotline, “Rachel,” couldn’t believe what she was hearing. Part of what the hotline does is help people who are in the middle of a mental health crisis get medical help. Oftentimes, like in my case, family members call to get help and information for a loved one. It’s not often when a crisis hotline receives calls from someone already in a hospital.
I already knew that Kern County had a mobile assessment team called the Metro Evaluation Team (MET). They do “field visits” and could, I was told by “Rachel,” go to the hospital to assess my mom. I couldn’t call the MET directly, though. I would first have to contact the police. They do an initial assessment and then, if the police deem it necessary, they contact the MET. This was problematic in a number of ways. How long would the police take? They’re not trained clinicians–what if they decide not to call the MET? Would they even bother going to the hospital at all? What if the police decide to kick me and/or my mom out? I prefer not to involve the police at all, actually, given their lack of training in dealing with the mentally ill. This particular situation and process made that inevitable. “Rachel” and I agreed that it would probably be best that the hospital staff make the phone call. The police would probably take them more seriously than if I were to call. I didn’t care, at this point, if the hospital had its own psychiatrist. It was pretty obvious that they were going to continue to provide marginal care, if any care at all, for my mother.
I returned to the ICU unit to make the request. It was around 7:30pm. The night shift had started, and I was greeted by the new attending nurse, “Harold.” Harold was a bit of a godsend. He was nice and receptive. I had seen him on the floor during my time there, but he hadn’t been assigned to my mother yet. He seemed briefed on the current situation and mentioned to me that my mom was still refusing care. I told him how unhappy I was with the current situation and what I wanted done. He was supportive. Together, we talked with his supervisor, “Wen.” Speaking calmly, but sternly, I made it clear to “Wen” what I wanted and that I was frustrated and upset. I hadn’t noticed if she had just started her shift. At that point, I didn’t really give a shit either way. My mom was being neglected, and there was no way her agitated state and stress level was good for her blood pressure and glucose, both of which remained high throughout her stay. I couldn’t make out exactly what my mom was saying in her room, but she was complaining loudly.
“Wen,” being a bit defensive, predictably stated that calling the police or MET team wasn’t an option. She said with doctor approval, they could put a request in for a hospital psychiatrist to give an evaluation, but that the psychiatrist wasn’t in until the morning. I agreed, but only as a way to make the hospital agree to some responsibility over what was happening. I didn’t think the situation would continue through the morning. I was certain something ridiculous would happen before then. Sure enough, as I was talking with “Wen,” my mom tried getting up to stand. She was trying to walk out of the hospital. My mom was still recovering and had just started receiving some physical therapy that day. She was only able to make it to the edge of her bed in that early afternoon session. She was obviously determined, given her state of mind, but she wasn’t physically capable of walking yet. I got to her just in time. She was standing, but starting to lose her balance. I gently sat her back on the bed and pleaded with her to not try that again. I couldn’t believe that the hospital was so blatantly willing to jeopardize her personal safety in front of me.
Shortly after this, my uncle, my mom’s brother, showed up. I had called him when in the room earlier with my mom. He has been a barrier in many ways to my family’s attempts at getting my mom psychiatric help, but I wanted some help in trying to convince my mom to stay in the hospital, at least until the morning for the psychiatric evaluation. I also just wanted to be free to walk around and, if need be, make phone calls. I couldn’t stay confined in my mom’s room or by her side the entire time, which may or may not have been a conscious strategy by the hospital staff or supervisors to absolve themselves of responsibility for my mom’s care and/or keep me preoccupied. My mom was insistent that she wanted to leave, though. By now, she was saying that she wasn’t in a real hospital. Along with repeating that she was being mistreated, she began saying that the air coming through the vents was making her sick and weak. She would continue trying to get up from her bed, even though her urine catheter was still attached.
By this point, the main supervisor, the “charge nurse,” was involved. Both the charge nurse and “Wen” began saying that they couldn’t keep her there if she wanted to leave. Patients have rights of course and by law, patients have the right to refuse medical care. My mom is very well aware of this and was referencing it multiple times. This point was reiterated by her doctor on the phone after the charge nurse called him to update him about the situation. This made it clear to me how the hospital administration wanted this to end. I challenged them and protested however I could, nonetheless. I started audio recording and took some pictures as evidence of their neglect and absurd reasoning. I threatened them legally, saying that if anything happens to my mom once she leaves the hospital, they knew they could be sued. I requested calling the police/MET team again. “Wen” insisted that even if they did, the MET team wouldn’t do anything until my mom was medically stable.
Technically, I know that’s true, in the sense that when someone is placed on a 51/50 hold, their medical/physical issues are stabilized first, before their psychiatric condition is treated. The reason being that medical/physical conditions, like high glucose, can cause or exacerbate a psychiatric issue/condition. That was an excuse for inaction at this moment, though. That wasn’t stopping them from making the call, since if the MET team placed her on a 51/50 hold, they could medically/physically stabilize her at the hospital she was already in or send her directly to the county hospital where they treat people on 51/50 holds. In response to Wen’s claim, I just said, “Whatever.”
And an actual 51/50 hold aside, I know hospitals have some sort of guidelines or plans for when a patient gets unruly. In fact, this was confirmed to me by “Harold.” At a moment of disagreement over my mom’s mental state with my uncle, “Harold” said to me that they could tie her down. As the next of kin, he asked me if that’s what I wanted to do and I said yes. My uncle by then was publicly saying, announcing, that my mother was an enlightened person and had a special connection with God. He went so far to say that my mother was talking with God there in the room. Calmly and sincerely, “Harold” initiated what I assume to be hospital protocol to tie down my mom. He told her, “Miss. [name witheld], I respect your views and admit that you may very well be an enlightened person and have a special connection with God. But your beliefs don’t override our responsibility to adequately care for you.” I appreciated “Harold’s” seeming sincerity in that statement. I assumed “Harold” was a devout religious person, like much of the staff seemed to be there.
Both supervisors interjected, though, and at that point, “Harold” took a backseat to their decision-making. Around thirty minutes later, after the supervisors talked to the doctor, at around 8:30 pm, Harold brought out a wheelchair and “Wen” began helping my mom get dressed. Before my mom was wheeled out to a waiting taxicab by “Harold,” the staff implored her to sign a document, stating that she was leaving against “medical advice.” This, I’m assuming, potentially legally absolves the hospital of responsibility of what could happen to my mother in the aftermath. So, taken altogether, my mom was essentially allowed to leave, despite still having high glucose (The machine read “220” when “Danny” checked it earlier. Normal is lower 100s.), high blood pressure, not being fully recovered from a lung infection, and despite being in a psychotic state. She wasn’t “discharged,” so she had no treatment plan, prescriptions and/or follow-up medical appointments made for her.
I have since launched complaints with the hospital, the State of California and the Deputy Director of Mental Health. I’ve inquired about legal assistance, but so far, no luck. My mom was weak and distressed in the immediate days after her release, but seems to have weathered the storm, at least for now. The county is supposed to be monitoring my mom’s condition, but as usual, that has been slow going. There’s a new program, Assisted Outpatient Treatment, I expressed to the county I’d like her enrolled in, but there are bureaucratic procedures and processes they seem committed to going through. The gross irony is that the county workers and officials know that another hospitalization for my mother is very likely to happen soon. That’s why they call it a “revolving door” of care. It should be called “miscare.”
I had started another blog in 2010, when I first started to try and get help for my mom. This is the first one I posted on there that goes into some earlier history.
My mom is a beautiful human being. I remember her being very intelligent, articulate and supportive and protective of me ever since I was in grade school in Fresno, CA. Like the time in fourth grade when a female classmate accused me of stealing a coveted pencil box the first day of school. The popular pencil boxes were transparent and came in an assortment of sizes and light colors. Students would put them on their desks for display and storage and decorate them as a form of individual self-expression. The box eventually turned up later that day, but that was little consolation to me. I remember feeling hurt and confused as to why someone who I didn’t know would accuse me of doing something so clearly wrong.
I told my mom what happened the moment I arrived home and she instantly became bothered and upset. She said I was being discriminated against because I was Mexican (It was a “Gifted and Talented Education” school and predominantly affluent and white.) and that she was going to school with me the next day to demand an apology from my classmate.
Sure enough, the next morning, with me timidly in tow, my mom marched into the administration office to meet with the principal. I remember being very nervous because my classmate’s mom was the office secretary. I had to wait there in the same room with her as my mom and the principle had their discussion. My stomach churned. They seemed like they were talking forever and it seemed like the secretary knew exactly why we were in there.
My memory is fuzzy as to how things played out next. Later that morning, though, I would get an apology from both my classmate AND her mom. My dignity was restored, and all on account of my mother having the passion and skill to protect me and advocate for justice.
Fast forward some twenty five years later. As I write this, my mother is calling me, but I’m unwilling to pick up the phone. She already left a message earlier in the day about how she has a court date later in the week because her property manager filed a restraining order against both her and her brother. She ended the message asking me to pray for her that justice is carried out in their favor. My mother is claiming that the property manager is just out to get them. Unfortunately, my mother is wrong.
For several years now, my mother has been exhibiting signs of a severe mental illness. She claims that people are spying on her and trying to hurt her, and even kill her, by doing things like trying to run her off the road when she is driving and sabotaging her attempts to find a job. Taking a deep religious form as it does, she also claims that Satanists are placing spells on her and the rest of the family, and that evil spirits are able to cause her physical and mental distress. She can spend much of the night praying out loud in an attempt to rebuke the spirits from causing her or the rest of the family any harm. The current problem with her property manager is just the latest in a long history of conflicts and confrontations with neighbors and strangers.
As any caring family would do, my family is trying to get my mom help. We have encouraged and pressured her in various ways to see a counselor, a priest and a psychiatrist, for instance. However, my mother lacks what psychiatrists call “insight”, the ability for her to comprehend and accept that much of what she believes and experiences isn’t real. Medical evidence suggests that this occurs because of brain damage caused by the mental illness itself. The brain simply loses its ability to self-analyze. Consequently, even though she expresses her desire to live normally again and have a better relationship with her family, she refuses to voluntarily see a psychiatrist for treatment. In fact, anyone who suggests she has a mental illness, in my mother’s mind, is involved in the grand conspiracy against her.
Involuntarily hospitalizations have of course occurred, since my mother puts herself in dangerous situations with regularity, including failing to properly regulate her diabetes. Each time she has been involuntarily hospitalized (“51/50ed” in legal parlance), however, she has been released in under 24 hours because the attending psychiatrists have felt that she is functional enough to receive treatment voluntarily!
This has occurred despite my family’s objections/concerns and, on one occasion last summer, my mom not having anywhere to live. I was my mother’s conservator at the time and I moved my mother in with me in San Francisco, CA to try and get her help. I had my mother admitted because she was having an acute episode, claiming, as she often does, that there were cameras in the walls of my apartment as well as an evil presence. She kept me up half the night by talking to herself and praying loudly and insisting I sleep with the light on. Through the morning she became more agitated, insisting that people walking and driving by were watching her. When I tried to assure her that she was safe, she became hostile and angry towards me. When I mentioned that I might have to call the police, she punched me in my stomach.
The police came and admitted her to San Francisco General Hospital. In around 24 hours, predictably, a hospital aide called me and told me they were ready to release my mother because she seems functional. I told them that as her conservator, my mother is no longer able to live with me because I can’t handle her if she isn’t stable. However, and probably in violation of state law, the hospital aide told me that if I didn’t come and pick her up, he was going to send her to a homeless shelter! State law says that a county is required to involuntarily hospitalize and treat someone who is “gravely disabled.” This includes someone who is not able to provide for their own shelter. In fact, a disability advocate recently told me that releasing someone to a homeless shelter is considered an unsafe discharge and if that happens again, I should contact a disability advocacy group right away.
I reluctantly went to the hospital to pick up my mother out of guilt and not knowing what to do. It was Mother’s Day and she called me hours earlier in the morning telling me how she wanted to come home and didn’t want to be in the hospital on Mother’s Day. She promised to make me Menudo, a Mexican soup, when she got home. I certainly didn’t want her to end up at a homeless shelter and I didn’t know if I had any legal options at the time. I suspected the hospital was violating the law, but I had no idea who to call nor how it would have played out exactly. Would my mom have to actually be on the streets or a homeless shelter before I could take legal action? Do I even want to go the arduous legal route? I don’t trust it, frankly. My family’s experience with the courts/legal process, after all, has also been one frustration after another.
I recently resigned as my mother’s conservator because of the emotional and financial hardship it created for me. I work fifty plus hours a week as a teacher during the school year and I have no family around in San Francisco to help me with my mom. Being with her, seeing and listening to her when she was experiencing a severe psychotic episode and just being her caretaker and part-time counselor was way too much for me. I’ve been dealing with borderline high blood pressure for around three years now and I felt my own well-being and health necessitated my resignation.
Before resigning, I tried to find an assisted living situation of some kind for her to live, but at around $4500.00 a month, the private places were way out of my family’s price range and the county facilities that accept some government assistance like state disability had, on average, a five month waiting period. In addition, there was no guarantee that a facility, either public or private, would accept my mother as a resident because, as I was told, they want people they accept to be relatively stable and adherent to treatment and medication. This route seemed entirely fruitless.
My hope was in resigning the county of San Francisco would take up the role as conservator. The county, like I was, would then be responsible for finding her somewhere to live and taking care of her medical needs. I could then play a more singular role as advocate and try to make sure she was getting the proper care she deserved. Instead, and despite my family’s vehement objections, in early April the SF judge decided to transfer the conservatorship back to Fresno and give it to my mom’s brother, even though we argued convincingly that he is not financially or psychologically capable of taking care of my mom adequately.
Since that time, my mother’s physical and mental health has predictably deteriorated. She hasn’t seen a doctor about her diabetes, broke her nose and received a concussion last month in a fall, and, along with her brother, has been evicted from two apartments in the last four months. What more obvious proof can there be that my uncle can’t care for my mom?! We talked about similar, past incidents at the hearing, but the judge granted the conservatorship to my uncle anyways. In her own words: “I reluctantly grant the conservatorship to [name withheld.]”
I’ve notified the SF court and my mom’s court appointed attorney, since the case hasn’t been transferred to Fresno yet and is technically, still in SF, but they have done nothing. The last conversation I had with the SF court investigator, in fact, around two months ago, ended in a heated exchange with her claiming there was nothing they could do and me exclaiming to her that the county is just trying to pass the buck to Fresno so San Francisco can save money. She did not deny this, while the Fresno court investigator confirmed as much in a recent phone conversation. The Fresno investigator has expressed a willingness to reconsider my uncle’s conservatorship, but she can’t do anything until the case is officially transferred in Fresno, which won’t be until sometime in late August.
Both my sister and I have also contacted Adult Protective Services (APS) in Fresno several times, and while they acknowledged they have a responsibility to make sure my mom is safe, they have dragged their feet in intervening. For instance, it has been two weeks since I talked to a supervisor who at that time said they would send an investigator to examine the situation. My understanding is that they are required to do so in ten days. I haven’t heard from the supervisor since. Recent messages my sister and I have left for her have gone unreturned.
In the meantime, my mom is suffering and putting her life at risk. Among other things, she has admitted to me that she hasn’t checked her glucose level in a few weeks and I doubt she is taking her diabetic medication regularly. Last time she came to visit me in SF a few weeks ago, I checked her glucose and it was at 487, which is considered life threatening!
My family is frustrated, angry and sad at the lack of help and support we are receiving from the government. As far as we are concerned, our situation is a perfect example of government neglect towards the poor and sick. They would rather someone wither away and die than spend money and time on helping them. Well, I’ve personally been watching my mother wither away for years and a part of me is dying along with her. I want to see my mom as whole as possible again, so we can share laughs, have real conversations and start making up for the years we have lost since her illness has taken over. Starting this blog is an attempt to help achieve that. The public needs to know about how the government refuses to help families like mine. Nobody deserves to live like this, least of all, my lovely mother.