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 mom’s high school senior photo.
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.
My mom in a prior hospitalization, around three years ago.
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.
Blood from the removed IV catheter.
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.
My mom being put in the cab.
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 in her late teens.
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.
benevolent neglect 