I am hardly posting on my blog, for different reasons. One, work keeps me plenty busy. But I, also, am having a hard time balancing my advocacy, work and personal hobbies. That said, I will be sharing some news about a recent public event I participated in in Modesto, CA. It was the first time my film, “Benevolent Neglect”, was shown in a theatre!
With this post, I’d like to share some important personal news. After an intense amount of training this past year, I was able to finally receive my Black Belt in Aikido. I started training 14 years ago, around the time I first started trying to get help and treatment for my mom. Needless to say, dealing with my mom’s longterm medical crisis and housing insecurity derailed and delayed my training. I started training regularly again in 2019, but then the Pandemic hit! Well, I finally persevered and I know my mom would be very proud of me!
Here’s a video I made of my personal journey in Aikido. I incorporate the personal journey with my mom a little bit.
I’m doing what advocacy I can still, though it is very slow moving. Most recently, I contacted a couple of California State Representatives to let them know I’m available to provide testimony for legislation related to treating people with severe mental illness (SMI). Improving access to treatment and care for people with SMI is getting more attention these days, due to the homeless crisis here in CA. However, as was the case when my mom was alive and we’d try to get her help, politicians and their aides are showing little interest in helping or listening to me. One of the aides of State Representative Buffy Wicks (District 15) actually asked me what my credentials were, when talking to them on the phone! As a political scientist, that perplexed me. As a citizen and tax payer, that disgusted me. Politicians need to be more responsive to their constituents, regardless of status.
I’m “playing the game” for now. But I’m not above harassing them to get a meeting. Below is a copy of a letter I recently sent to Representative Miguel Santiago (District 53), as an example.
Dear Representative Santiago,
I am writing to you because I would like to give testimony for bills and proposals related to the treatment of people with severe mental illness (SMI). I understand that there is currently a bill, AB 1340, that you are sponsoring that is scheduled to be discussed in January. The bill, as I understand it, would amend/modify “Grave Disability” criteria that is a part of the 5150/LPS process. I am highly interested in providing testimony for that proposal, given that I have unique experience and invaluable knowledge in dealing with the 5150/LPS process.
Professionally, I am a community college teacher and a Political Scientist. I have been teaching full-time at City College of San Francisco since 2005. I am, also, an advocate for people with SMI and a former caregiver of a family member with a SMI. My mother, a second generation Mexican-American, began exhibiting signs of a serious mental illness around 2002. I started to play a direct role in trying to get her help and treatment in 2007. By then, as a result of no treatment, she was having hallucinations and not taking care of her medical/physical needs, particularly her diabetes. Despite my family’s best efforts, my mother would spend the last 1/3rd of her life with an untreated SMI. In my experience with the mental healthcare system, as my mom’s advocate and caregiver, I largely blame the 5150/LPS process for her needless suffering and premature death.
I found out relatively quickly how difficult it was to get help for my mother, when I began advocating for her in 2007. Though my mother would be 5150ed various times, between 2007-2009, I was told by representatives in both San Francisco County’s and Fresno County’s Behavioral Health Department that it would be easier for them to take her in and treat her if she were homeless! “Really?!”, I thought. “How unconscionable!” I had to get both counties involved, since I was living in San Francisco and my mom was primarily in Fresno, at the time.
Starting in 2010, the unimaginable would happen. My mom would end up homeless, living in a car, due to multiple evictions from apartments. At times, when we could, my sister and I would try to have her 5150ed, out of desperation. She’d show up at our houses exhausted and sick from lack of sleep and rest, and failing to treat her diabetes. The police would show up and, each time, refuse to 5150 her. Though homeless and obviously ill, they would judge her to not be “gravely disabled.” They would essentially tell us, “She has to be lying naked in urine and feces on a railroad track” for her to meet “gravely disabled” criteria. In these experiences and more, what became clear to me is that her living in a car was considered “adequate shelter.” My mom barely having any clothes to wear, even in Winter, was still viewed as “adequate clothing.” Though she was diabetic, eating primarily high fat and high carb food was viewed as her being able to “adequately feed herself.” My mom having an official diagnosis of schizoaffective disorder did not matter to them. Each time, they would conclude she was “competent” and able to make decisions for herself.
To me and my family, this was an outright neglect of duty by these police officers. Eventually, in 2018, she would develop stage 4 kidney failure. A Modesto police officer took this institutionalized neglect and, really, cruelty, to a new level when he refused to 5150 my mother in January of 2018, when she stopped taking her medications for various serious physical conditions. My mom was in the midst of an acute psychotic episode and stopped taking her medications because “God told her they were poison.” Going on day four, she was unable to eat or drink anything. She did not have an appetite and would puke up anything she tried to drink. She was demonstrating organ failure. Despite this, the police officer determined she did not meet 5150 criteria. My arguments to the contrary and pleas for help fell on deaf ears. The police officer, like many before him, ruled my mom was “competent” and able to decide for herself if she wanted to go to the hospital. My mom could have died at the house. The police were willing to let her die. Fortunately, however, from the urging of other family members, my mom would agree to go to a hospital later in the day and be medically/physically stabilized.
All of this is to say nothing of other times the 5150 process and various authority figures and officials failed my mother. I detail this some in a documentary film I made in 2020 titled “Benevolent Neglect.” It is available for viewing on YouTube. (A film trailer is available for viewing here: https://youtu.be/ta08Lo3ULqo ) With this letter, I have focused on the problems my family has faced with how “Grave Disability” is interpreted and applied. It is too NARROW. Dr. Julea McGhee, who is the emergency room psychiatrist in my film, told me this. She said the problem is insurance companies determine what constitutes “Grave Disability” and that they intentionally define it narrowly. In her opinion, many more people should fit the criteria for “Grave Disability” than actually do. I understand that AB 1340 would amend “Grave Disability” to include “medical self-neglect.” I strongly support including “medical self-neglect,” as my mother’s frequent hospitalizations and deteriorating health were undoubtedly the result of her severe mental illness. As I think I demonstrated, I can speak on this with considerable knowledge and authority. I have much more I could say and contribute in this discussion and debate. Thank you.
This past Friday, the 27th, marked three years and six months since my mama passed. For a time, I’ve been wanting to write a post, a fictional piece, on what it’d be like to have a heart-to-heart conversation with my mama. I figured I’d do it now. What would make it fictional? Because in my fantasy, my mom would be well. She wouldn’t be suffering mightily from her untreated serious mental illness like she was for the last 1/3rd of her life.
By the time I was 24 years old, my mom was beginning to show signs of her serious mental illness. As time went on, and it went untreated, I would have to be extremely careful about what I shared with and told my mom. For one, I didn’t want to cause her any more stress. A stressful situation or event could induce an acute psychotic episode. Two, it could cause conflict with us in some way, since she could integrate anything I’d tell her into her delusional world. For close to a decade, she’d often implore me to quit my teaching job in San Francisco because she didn’t want me to teach “in a city with Satanists,” for example.
As a grown man, I could have used my mom’s support and advice about such things as work and relationships. I didn’t get that, though. Not the way I should have, anyways. So here is what I imagine a conversation would be like with me and my mom if she was of sound mind.
Me: “Work is a drag. They are cutting our pay substantially. But, of course, I still have as many students as ever in my classes. I’m never going to be able to buy a house in the Bay Area at this point. I’m fed up. The situation sucks the joy out of teaching.”
Mom: “Those devils. They certainly don’t appreciate the work you do as a teacher. You should pray on it and think about what you want to do. And, you know, it’s not too late to go back to school and get your Ph.D!”
Me: “I know, mom. But I don’t want to go back to school. Academia isn’t really for me. I don’t want to be a poor college student again and I can’t really stand the culture. It’s too snobby. I’ll try to stick it out at work a little longer. You remember how happy I was when I received the job offer?”
Mom: “Yes, of course. And your father and I were very happy for you. I tell everyone I talk to that you’re a community college professor.”
Me: “I know, mom. I was just starting to make pretty good money too, after 15 years of teaching. If I knew when I was 20 years old how much I’d be making, at least before the pay cut, I’d have been thrilled.”
Mom: “You’ll be a success no matter what you decide you want to do.”
Me: “Yea. It’d be nice to find something without the long work hours. Maybe I’ll move back to Fresno soon enough.”
Mom: “That would be nice for your father and I. But what about your female friend? What’s her name again? Stacey?”
Me: “Yes. We aren’t seeing each other anymore. I broke it off before it could get too serious. She was hinting at wanting something exclusive. Ever since my relationship with Marie, I’ve had trouble opening up to women I’m dating.”
Mom: “That relationship was not healthy for a large portion of the time you two were together. That was, also, some time ago now, though. I know your father and I argued a lot in front of you and your sister when we were married, but we did try, as you know. You should try not to repeat our mistakes.”
Me: “I know, mom. You made us go to family therapy. I didn’t appreciate it or really get it at the time, but I think it was admirable and smart for you to do, looking back.”
Mom: “Yes, therapy helped a bit, but your dad was set in his ways and emotionally shut off. He changed when he came back from Vietnam.”
Me: “Yea, when you first told me that, I wasn’t sure whether or not to believe you. But then cousin Melissa confirmed that you said that about dad back then. Whatever it is exactly, it prevents him from even listening to me when I want to talk to him about important things, unless I demand it. I practically have to yell at him to listen to what I have to say sometimes. It’s going to be hard on me if you end up passing before dad. He doesn’t understand me or just the world like you do.”
Mom: “Your dad has a big heart. Just try to be more patient with him and watch your tone when you speak to him. You get impatient quickly with people.’
Me: “I know… that’s what Marie said. That’s what Stacey says. That might be a little bit of what I picked up from dad growing up. I’m trying to improve that.”
Mom: “Maybe go see a therapist. Hahaha”
Me: Maybe…Are you proud of me, mom? At the man that I’ve become at 45 years old?”
Mom: “Yes, of course! Why are you asking me that?!”
Me: “Cause I’m a very different person than I was 20 years ago, even 10 years ago. I have a demanding job with a lot of responsibilities and, I’m not complaining about this, but those years I had to help you when you got sick were hard on me. I feel like I didn’t really enjoy my thirties and now, at 45, I’m single and don’t own a home. It makes me doubt myself.”
Mom: “I’m very proud of you. I couldn’t be prouder. I, of course, wish you would develop a closer relationship with God. But that’s between you and him and I know you try in your way to have a spiritual practice. I think you live by your principles and genuinely care about people and others. And your smart and successful, yet humble and grateful for everything you have. God will continue to bless you because he knows your heart and sees your actions, and I take comfort in that. Knowing he will look after you, even when I’m gone.”
Me: “Well, I’d hope that you’d look after me too, assuming you could from the afterlife.”
Mom: “You may not be sure, but I am. The love I have for you and our family is undying. You’ll see!”
Me: “I know, mom. You are a wonderful mama. You did a great job.”
I’ve decided to try and convert this blog to a promotional page for my film, Benevolent Neglect. Having a website for my film is one of those marketing aspects I haven’t been able to create yet, given I’m a one person operation and my regular “day job” keeps me way too busy. I’m content with the positive responses my film is garnering, but I know it has the potential to attract a bigger audience. That’s the only way any politicians are going to take it seriously, I figure. I’ve sent it to officials to watch, but haven’t received any response or feedback from them. Typical, I know. In the least, it will give me something productive to do when I feel my advocacy is fruitless. I’m not sure what it’s going to look like yet, but I still plan on blogging on occasion, once it’s converted.
In the meantime, here are some short videos I took when I went to visit my mom at the cemetery on Mother’s Day. I was feeling somewhat creative and wanted to give a more personal feel for what it’s like when I’m there. I’ll usually stop by on my way to Fresno and then, again, on my way back to the Bay Area. The first video is the Friday, two days before Mother’s Day.The second video is on actual Mother’s Day. A mariachi band greeted me as I arrived. It was lovely.
It was the third Mother’s Day without my mom. I would normally take her to Marie Callender’s, her restaurant of choice for the occasion. I turned 45 years old this year. I should still have my mother.
It took me longer than I wanted, but the first cut of my film, Benevolent Neglect, is completed. I’m circulating it to a small group of people for feedback, but plan on being completely done by the end of August. I wanted to share the news and opening scene with my “followers” on here. You can view it below. Thanks for the support, especially to those of you who have been following my blog for some time now. It never got the attention I would have liked it to, but every visitor and follower mean a lot. I know the story has the potential to resonate with many more, so that’s why I decided to make a film. Feedback, so far, has been very positive.
Even when my mom was homeless for close to two years, living in a car, I always made time to see and visit with her on Mother’s Day. She always wanted to go to Marie Callenders for the occasion. This past weekend, like I’ve done the two previously, I went to the cemetery to give my mom flowers. I made it a point to do some filming, too. What I’m sharing with you, below, is the closing scene to the introduction to the short film. Of course, there will be narrating and music added.
There are two days left for the fundraiser. Though I’ve made my goal, I am still fundraising to cover the costs of some unanticipated things like buying historical film footage and hiring someone to do some graphics animation. I’ll be lucky to break even, when all is said and done. So, please share the campaign link to others who you think might be willing to support my project.
As a former caretaker, The Joker movie hit me in a raw way. I think the movie accurately portrays how society mistreats the poor and people with serious mental illness (SMI). I saw this, firsthand, in trying to help and take care of my mom, who struggled with schizoaffective disorder.
My mom wasn’t able to take care of herself adequately. She, in fact, had been suffering mightily and deteriorating for years. I couldn’t take it anymore. She deserved to live with a semblance of dignity.
When I started taking care of her full-time, we didn’t have a lot of family around and I didn’t have a lot of money saved up from my teaching job. So, my mom and I were pretty isolated socially and very reliant on the government for her healthcare and welfare needs.
I was able to stabilize her medically (physically) enough and keep her safe for two years, but society made it exceedingly difficult, in every respect, for me to do so. As it was, it never provided us with sufficient help and respect, since the onset of her SMI. My mom needlessly suffered for more than a decade. She would never be treated for her SMI and stabilized. She was discarded. We were discarded.
“They don’t care about people like you, Arthur.”
Those were the words spoken to Arthur Fleck by his government social worker (SW). She was referring to the policy makers (officials) who decided to close her office and, thus, cut Arthur off from his psychiatric meds. But as was clear in their interactions, even the SW didn’t seem to care all that much about Arthur’s struggle. As Arthur stated moments before she told him the news, “You never really listen to me.” He’s of course saying she doesn’t really care about him.
This was all too common an experience in trying to access MH services for my mom. For example, there was the time when an intake worker/clinician at a county Behavioral Health Department, in flagrant violation of county policy and state law, outright denied my mom MH services, because my mom, like many people with SMI, denied having a SMI!
The worker was cold and impersonal from the minute we met. I remember saying, angrily, on my way out of the interview/assessment, “I’m waiting outside, mama. All she’s doing at this point is filling out information so they can get their money for seeing you from Medi-Cal.”
There was the time when a hospital nurse and supervisor unsafely discharged my mom against my wishes. My mom was clearly in a psychotic state and unable to make a competent decision about her own care. My mom didn’t even believe she was in a hospital.
Despite this and her physical condition being fragile (She would be treated for sepsis and was just two days removed from a ventilator.), hospital staff would wheel her to a cab. They couldn’t even be bothered to do a psychiatric evaluation to see if she fit involuntary hold criteria.
This incident was an extreme example, but our experiences with various hospitals taught me they don’t give a shit about people with SMI. Whenever my mom started to become non-compliant, due to her psychosis, staff would become less attentive and they’d begin preparing her for discharge, even if she wasn’t medically stable.
And this is what they were willing to do regularly in front of me. I can only imagine what they did all those times I wasn’t with her before she lived with me!
“Is it just me or is it getting crazier out there?”
That’s what Arthur asked his social worker during one of their sessions. She responded by saying, “It’s tough times. People are struggling with no work.”
Her comment is a reference to the larger political and economic situation the movie is based in. It’s a pretty subtle backdrop, but the movie itself starts with a radio report of a pitched labor battle, a garbage strike, to help make that very point.
It lasts weeks and leads to increasing piles of garbage on city and neighborhood streets. Tensions build and, eventually, protests breakout at what’s clearly deep frustration with economic inequality and uncertainty, and government mistreatment and negligence.
Arthur’s access to his meds and social worker getting cutoff epitomizes how poor people with disabilities are some of the biggest victims of these conditions. Social scientists actually have a name for such government practices. They’re called “austerity politics.”
In a basic sense, we have been living under an era of “austerity politics” for decades. Since the 70s, governments, at every level, have been cutting costs and services (i.e. downsizing), in the name of “fiscal responsibility” and in order to foster a better “business environment.” It’s a process, a project really, that started as a result of a sluggish economy, increased foreign competition and lower corporate profits. The movie is set in the early 80s, the decade when the process accelerates. (My mom would actually lose her job with the State of California in the late 90s, due to layoffs.)
Mental health services have not gone untouched. People like to blame the Republicans and Ronald Reagan for the closing of state psychiatric hospitals. But today, even in “Liberal” San Francisco, we have a local government severely neglecting the needs of its own SMI population. So much so, we have local MH workers themselves speaking out against the inadequate conditions and publicly protesting. In fact, former Chief Psychiatrist of SF General Hospital, Robert Okin, describes the situation as a “war on the mentally ill.”
Arthur’s social worker’s full comment actually was “They don’t care about people like you, Arthur. They don’t care about people like me either.” I’ve had my issues with regular staff and frontline workers. In fact, a friend my mom and I made at her dialysis center even told me, in a private conversation, that her coworkers don’t care about the patients. They only care about the money.
This regime we are living under of austerity leaves me with no doubt, however, that high level administrators and public officials are the biggest culprits of all. They make it too difficult, if not impossible, for even the best and most empathetic workers to do their jobs.
“Society decides what’s fun-ny.”
Arthur says this after embracing his homicidal, violent urges and becoming The Joker. It’s the beginning of a strident public criticism he makes, while appearing on a late-night talk show, to explain his rage and motives. His criticism really is the first time he says something so politically cohesive in the movie.
In a basic sense, he says society made the rules and the rules were made to keep him marginalized and an outcast. He worked hard and honestly, but he lost his job cause of a dishonest coworker and cold-hearted boss. He wanted to get better, but he was cut off from his meds. He cared for his ill mother the best he could, but in the end, she was his biggest betrayer and abuser.
My life experience hasn’t been so bleak. In fact, there were many people, workers, clinicians and strangers that were nice to me and my mom, and did try to help in some way. And my mama knew I loved her and I know she loved me, even though her SMI strained our relationship.
But I damn well know there are too many people who have it worse, like Arthur. And some of them, unfortunately, do lash out with violence. As it is, I’ll never forget what was done to me and my family. I don’t know if I’ll ever be able to forgive. Society will try to focus on individual motives or psychological reasons for behavior it doesn’t like, but the fact of the matter is society, is too often, the monster.
My mom’s birthday just passed. She would have been a young 68 years old. Like last year, I went to the cemetery to take her flowers. Visiting her grave on special occasions is a kind of ritual for me now, and I don’t expect that to really ever change. It’s part of my healing, and my healing is going to be a long road, I’ve realized.
Sure, the grief is lessening, but other issues remain. Or I should say, have revealed themselves, like my Post Traumatic Stress Disorder (PTSD). Now, I knew I had anxiety. I’ve wrestled with that for some time. In fact, I mentioned that to my mom her last week with us, while she was in hospice, as a way to try and make some atonement for losing my temper with her at times. I apologized to her and said my anxiety can make me irritable.
Just weeks after my mom passed, though, I began to notice some persistent changes and problems with my mind and body. Things I hadn’t really noticed before. As I researched and learned through counseling, they were definite signs of PTSD. Before I explain my experience, here’s what the National Institute on Mental Health (NIMH) says about it:
“Post-traumatic stress disorder (PTSD) is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event… Nearly everyone will experience a range of reactions after trauma, yet most people recover from initial symptoms naturally. Those who continue to experience problems may be diagnosed with PTSD.”
It’s well-known that PTSD is something experienced by many combat vets. Experiencing the death of a loved one, however, is also traumatic and can lead to PTSD in survivors, especially when the suffering is prolonged.
Mental health advocates have a name for this. It’s called “traumatic loss.” Two researchers define it the following way:
“A death is considered traumatic if it occurs without warning; if it is untimely; if it involves violence; if there is damage to the loved one’s body; if it was caused by a perpetrator with the intent to harm; if the survivor regards the death as preventable; if the survivor believes that the loved one suffered; or if the survivor regards the death, or manner of death, as unfair and unjust.”
My experience with my mom meets most of these “check boxes.” Over the course of many years, I lost my mom twice, once to her mental illness, the second time physically. In her last two years, the time she lived with me, her kidney disease would gradually take over. I witnessed her lose her physical strength and increasingly pre-age. And the violence? I saw, firsthand, how my mom was the victim of institutional discrimination, abuse and neglect. My heart broke over and over again, in many ways, in this whole ten year plus ordeal.
The sadness and guilt were as intense as I figured they would be, after my mom passed. But as I got better at navigating the murky waters of grief, I started to notice those other changes and problems.
For one, I was restless and uneasy. I would pace between rooms in the house at times. I didn’t recall ever doing that before, aside from the week my mom was in hospice. I liked to relax whenever possible. What was this about, I wondered?! I began noticing, too, that something was going on with my mind. Thoughts were racing and intrusive, and I would be a bit forgetful. I wasn’t able to “zone out” by just watching TV anymore. I had to, also, navigate and skim things on my computer, when watching a TV show. Memories and moments of despair played like songs on repeat in my mind, like the time my mom told me, about a month before she passed, that she didn’t have the strength in her hands to cut zucchinis for Albondingas soup. That was the last time she helped me in the kitchen.
I started to realize that it was like I was stuck. Stuck in my role as caretaker for my mom. Stuck trying to fight my hardest to keep her alive. Stuck dealing with, and often pushing back against, her doctors and hospital administrators, monitoring and assessing her condition every day, counseling her to take all her medicines, and then keeping her as comfortable as possible in hospice.
Yea, I was stuck. My body and mind didn’t know how to turn itself off or even how to lower the volume. Part of them, I’m sure, didn’t want to. I just wanted my mom back. How dare the system take her away from me, from us, so unjustly and prematurely! To accept my mom passing was to accept that we ultimately lost the “battle,” so to speak.
The restlessness, intrusive thoughts and hypervigilance I just described are classic symptoms of PTSD. I, thankfully, don’t have nightmares. But my sleep isn’t great. More than a year after mom passed, I still wake up a few times during the night, as if she’s still here. She’d wake me up, for different reasons, or I’d wake up to go check on her. And rare is the morning that I am able to sleep in past 7:00. I used to get up at that time, like clockwork, to give my mom her morning medicine. I can still be tired, but my racing thoughts won’t let me go back to sleep easily.
And irritability? Check. Anger? Check. While I experience these emotions at times, for what appears to be no logical reason at all, unrelenting intrusive thoughts summon them easily enough. As for flashbacks? Sure. When I see a homeless person or when I’m at a doctor’s office for a medical checkup, my blood pressure and anxiety easily rise. I’m back there, again, in some fashion.
All this said, I am in counseling and doing my best to take care of myself. I was 8 months into my grief counseling when I started to see another counselor for more formal treatment. He would diagnose me with PTSD. I’m also experiencing low-level depression, which makes the self-care part of my healing hard sometimes (I have little motivation to cook), but my counselors say I’m doing very well, all things considered. Still, I know I need to find a meaningful purpose. I need to find peace. I need connection with others. I need understanding. It’s a long road and will probably always be a winding one. But I’ll persist and continue to heal because I know my mom would want me to.
I did my best to write this past week, a year after mama passed away in hospice care. Between the intense emotions I was feeling, rituals I did for peace/tranquility and having to work, I only managed three posts. She would pass on the ninth day of hospice, only 24 hours after placing her in a hospice facility from home. I plan on writing on my experience with grief soon. For now, here’s something I wrote on February 27th, the anniversary of my mama passing, on Facebook.
My mama passed away a year ago today. I wasn’t with her at the time. I had decided to go to work, thinking that she had at least one more day left, given the “near death symptoms” she was exhibiting.
As it was, I had to put her into a hospice facility, because I didn’t have enough support at the house to take care of her. She had become bed ridden and my extended family had to return home. I did make arrangements, of course, to have someone there with her, while I was gone. In the morning, the substitute caretaker and in the afternoon, my dad.
Fortunately, dad was with her when she passed, but not being there with her when she passed gets me down at times. Course, people have tried to assure me it was better that way and that it’s what mom would have wanted. I’ve even heard stories of people dying in hospice care the moment a loved one arrives or leaves the room. If mama got to “choose” when to pass/transition, then I know that is what she would have wanted. She wouldn’t want me to see her/be with her like that and she’d want to be with my father, whom she always cared for, even after their divorce.
This week was hard, but today has been OK. I took mama flowers this morning at the cemetery, lit candles this afternoon, through the time of her official death, and am going to eat one of my mom’s favorite meals for dinner. I’m getting better and, dang, in some areas of my life, I’m hella strong and people better watch out cause I don’t have the anxiety I’ve carried around with me all these years, since my mama got sick, anymore. Thanks for those of you who have supported me, since I first posted about my mama’s condition just three years go. I appreciate you.
A year ago, today, would be day 6 of hospice for mom. By then, she wasn’t eating and was physically very weak. She needed substantial assistance to get out of bed to go to the bathroom or another room.
At one point, I believe on day 5, she asked one of my cousins why she was getting weaker. My mama truly didn’t understand. Such was the state of her serious mental illness (SMI); She’d have little self-awareness about her true medical condition.
Indeed, since my mom first started exhibiting signs of a SMI, this had been a constant feature. Even as her physical health sharply declined over the years, her lack of self-awareness just became more elaborate.
“The machines (blood pressure and glucose monitors) work when they want to.” “The lab results are being tampered with.” “The medicine is what’s making me sick.” She’d say all these things and more on a regular basis.
In fact, to my mom, the beginning of hospice just confirmed her belief that she would start getting better, since she could stop taking her medicines (In hospice, a patient’s regular medicine is stopped and the focus becomes on keeping him/her comfortable. Yay for morphine.) This is what she was saying God wanted, before hospice even started, after all.
While we were careful with our words, in response to my mom’s question, my cousin could only tell her the truth, “It’s your kidneys.” Mama didn’t respond. It was taking a lot of effort for her to talk at that point. Perhaps she just decided to save her energy or just pray silently. But I’m sure that didn’t make any sense to her at all. My mama was expecting to get healthier and stronger, not sicker and weaker.
As if navigating the situation and counseling her weren’t challenging enough, given her delusions, she’d also experience intense hallucinations.
Now before hospice, as part of her SMI, mom had regular audio hallucinations. But aside from occasionally seeing things that weren’t there, like cameras on the walls (They were usually just spots of sunlight coming into her room.), she didn’t really have visual hallucinations. Visual hallucinations began appearing relatively early in hospice, though. Being new to her, this understandably confused and, at times, distressed and scared my mama.
They’d begin on day 3 and, curiously, would begin around the same time she’d start developing severe apnea. My girlfriend and I were talking to my mom by her bedside in the evening, when she seemingly started nodding off to sleep. She closed her eyes mid-sentence and her head began to lower.
Around 30 seconds later, she raised her head, opened her eyes and asked us:
“Do you see them?”
“See who, mom? It’s just us. What’s there?”
“There’s some people standing over there. Shadowy figures. I can’t make out their faces.”
“Are they scary, mom?” I asked. To my great relief, she replied, “No.”
This continued around an hour that evening. Mom wouldn’t see things every waking minute, fortunately, before finally falling asleep. But she’d continue to see the shadowy figures and would begin to see flashes of light. She’d also say she saw a woman she didn’t recognize, sitting in the room with us. Thankfully, mom wasn’t frightened, but she was perplexed by these new experiences.
Disturbing and scary hallucinations first appeared in the form of several faces she would see. One appearing minutes after seeing a little girl. We had just convened in the living room with my aunt and cousins.
“Do you see the little girl?” she asked, as she pointed behind the couch.
“No mom.” “No Aunt Josie.”
The little girl disappeared and we continued talking and interacting with her, as normally and supportively as possible. My cousins, being older than me, had a lot of good memories to share with my mom and I about my mom’s younger days. They were reminiscing when my mama let out a sudden shriek and pointed towards one corner of the room. I don’t remember the exact words she used to describe the face, but she described a ghoulish or devilish morphing one.
Unfortunately, these scary visual hallucinations would continue when mom had acute psychotic episodes. I believe three altogether. In the evening on day 6, for example, she started complaining that her feet were getting really hot. She pleaded with my girlfriend to take her socks off. “Hurry! Hurry!” she said frighteningly.
She then described seeing the earth opening up below her and became afraid she was going to fall down through. We did the best we could to keep her calm and assure her Jesus wouldn’t let anything happen to her. “Focus on Jesus, mama. Look for Jesus. Nothing sinister is welcome here.”
The hospice chaplain recommended we tell her to look for Jesus and the light, when she started seeing things. During another acute episode, I read her favorite verses from Psalms for close to an hour. My aunt and cousins prayed with her, recited the Rosary and had salt at the ready for the duration of their stay.
I saw my mama suffer tremendously throughout the years, physically, mentally and spiritually. It traumatized and saddened me, for sure. And seeing her scared during hospice was particularly heart wrenching and painful, since she was in her final days.
Not being especially spiritual or religious, I found myself asking my grandmother, my mom’s mom, to help me and mom, out of desperation. I think she visited us on day 7, in the early morning. I’m pretty sure I smelled her, after not smelling her in more than 20 years. I, also, think mom sent a humming bird to visit me this past Monday, what would be the first day of hospice last year. I’ll elaborate on that event in a subsequent blog post.
Hospice was life changing. I’ll never be the same again.