Mom, I Need Someone to Talk to

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.

Christmas, 2007

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.”

Mom: “Thank you, mijo.”

National Best Seller Reviews My Film

I was lucky enough to have my film, Benevolent Neglect, reviewed by national best selling author and mental health advocate, Pete Earley. Pete knew my family’s story somewhat, from when my mom was living with me in Modesto. As a way to raise awareness about our plight and to possibly have people at the ready to help me shame local government to help my mom, I had asked Pete to run a couple of my blog posts on his blog. He obliged.

I was hoping Pete would like my film. I wasn’t expecting him to give it such a glowing review, though. I’m so happy he did. Mom would be proud of me, for sure. Here are some excerpts:

“A Modesto police officer refuses to involuntary commit Josie so she can go to the hospital even though she is clearly a danger to herself. Why? Because she is able to tell him what day and month it is, along with the name of her street. A  hospital supervisor ignores Estrada’s pleas even though his mother has nearly died because voices are telling her not to take her diabetes medication. Why? Because Josie wants to be discharged and the supervisor doesn’t want responsibility for her.  A California Department of Mental Health employee rebuffs Estrada when he says his mom has been kicked out of so many apartments, she now is homeless. Why? Because she is living in her car and therefore has a roof over her head.”

“All of us rejoice when we read accounts about individuals, such as my son Kevin, who get treatment and the tools needed to control the symptoms of their illnesses and do well in life. I believe most Americans with mental illnesses can but Estrada’s film reminds us that getting that help often proves impossible.”

You can reach the whole post here: http://www.peteearley.com/2020/09/28/14812/

First Cut of My Film Is Done!

Hi all,

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.

Benevolent Neglect as a Short Documentary

I haven’t been posting because I’m working on a video project, while on my sabbatical from teaching. For my followers and visitors, yes, this project is a new phase in my advocacy work for my family. It’s a short documentary on my family’s experience with the mental healthcare system.

As those things go, costs accrue, related to production and planning. They’re relatively low, since I’m doing this project as an “amateur,” someone who has no formal training and experience with filmmaking. It’s something I feel compelled to do, though, and feel pretty good about the prospects of completing something valuable and important. If you could take the time to considering donating to my fundraising campaign for the film and sharing it with people you know, I’d greatly appreciate it. Here’s the link to the Kickstarter campaign (click on “campaign”).

Below is a snippet from the campaign website, followed by a short video segment of an interview I’ve already done with a family friend. Thank you for your consideration and help!

“This short documentary is my latest attempt at advocating and seeking justice for my mom and family. I have no formal filmmaking training or experience, but am determined enough to make something meaningful and impactful. I’ll be incorporating a significant amount of my own knowledge, experience and research in the film…

I’ve, also, been lucky enough, through making connections, to make plans to interview people who have worked on the “inside” of the mental healthcare system. One person used to work on a community mental health crisis team and another was a doctor in a psychiatric emergency room. I’ll be using my training as a Political Scientist to include a Politics of Mental Healthcare section in the film, as well.”

High Stress, Caretaking and Their Aftermath: PTSD Takes Root

fullsizeoutput_349
A selfie with mom, a few months before I moved her in with me.

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.”

IMG_2512 (1)
Restraints my mama was put in at a hospital.

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.

IMG_0508
A tribute to mom: A rose, representing mom, going to heaven.

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.

February Musing #3: Hallucinations or Visitations?

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.”

JesusPic
A picture/illustration of Jesus mom had in her room. a caption

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.

(To Be Continued)

The Cold Has Arrived. I’m Back in My Lowest Days Again.

My mama passed away in late February, my birthday month and almost two years to the day I moved her in with me. The immense grief has gradually decreased, as I read and was told it would do. But some days, the grief, and the guilt and sadness associated with it, hit me intensely. It combines with my “PTSD.”

I say PTSD because of the intensity of the painful memories and feelings I experience and relive at times. Partly situational, there are a number of things that can trigger it. Most recently, it has been facilitated by the arrival of the cold weather.

The cold is a raw reminder of the time my mom was homeless, living in a car, for around two years. The whole ordeal was traumatizing and depressing. I would, in fact, be put on an anti-depressant for a short time then.

In the Central Valley of California, the weather is similar to that of a desert. In the summer, it gets hot, over 100 degrees many days. In the winter, it gets cold, into the 40s and below freezing at night.

Making it through the cold winter nights was very difficult for my mom. She would have to turn on the car and run the heater throughout the night. How I hoped the car engine or heater wouldn’t go out from her doing so! My mom was tough and, actually, didn’t complain much at all. But she’d of course ask for help at times.

letterfrommom
A letter from mom

In a letter she wrote, asking me if she could come live with me, she specifically mentioned the difficulty of surviving the cold. I bought her blankets and clothes to help and checked in on her regularly, but it wasn’t enough. She didn’t know, given her serious mental illness, but I suffered too.

I had tremendous trouble sleeping during cold nights, knowing my mom was out there. It was agony. And just stepping outside in the cold weather would strike me with dread and despair. The first winter my mom was homeless, I lost a lot of weight. By the second, my stress and anxiety reached the point that my doctor suggested I take a leave from my job.

The cold weather arrived a few weeks ago, freezing temperatures this past week. With it at times, the feelings and memories of those two years. Each time, I’m there again, in that time period, in a moment, seeing her and hearing her suffer in some way and feeling the dread, agony and heart break all over again.

If it’s not the cold directly, it’s seeing homeless people trying to survive it, like the woman I saw as I drove to work the other day. In a sleeping bag on the sidewalk, I noticed her as she sat up. She sprung up and made a facial expression of great discomfort and pain, mouth wide open, eyes closed, like a silent scream. That moment took me right back to my mom.

fullsizeoutput_349
Me and mom before Thanksgiving dinner at a Marie Callender’s in ’15.

At these times, and whenever the grief is great, I take deep breathes and try to remember all that I did to help and take care of my mom. That includes advocating for her fiercely when she was homeless. And I’d still visit her when I could, including for Thanksgiving. I’d usually take her to Marie Callender’s, her place of choice for the occasion.

In a few days, it will be the first Thanksgiving without my mama. I’ll miss her company. To help get through it, I’ll be spending it this year in the warmth and company of my extended family, my aunt (my mom’s sister) and cousins. It’s what my mama would want: warmth, instead of cold, connection, instead of estrangement, hope, instead of despair. I’m trying, mama.

Musings on Blogging, Life and Depression

I haven’t been too motivated to blog. In fact, it has been three months, since my last post. It can be time intensive and I don’t receive a lot of traffic on it, but I should just write to get better at writing, I think sometimes.

IMG_5916
A book I’m reading, given to me by a dear friend.

Besides, eventually, I may want to write a memoir or screenplay and writing regularly can act as a kind of journal of my life to help with that. I already regret not writing more about my experiences with mom or video recording her more when she was alive, after all.

And the number of views and followers shouldn’t really matter. As my experience with my mom taught me, even if you reach or save just one person, the love and value expressed in that transcend space and time. There is no big or small. And it’s the love shown for others that help one protect themselves.

Given this newfound perspective, I’ll be writing a new post in the next couple of weeks. It will be on a topic I’ve been wanting to write about for months: my experience as a caretaker for a parent. It’s unique and the story should be shared.

For some context, know that many mental health advocates are parents and many of them are caretakers for their children, who are recovering from serious mental illness. Parents, understandably, feel an undying loyalty to protecting their children. But what familial and emotional obligations do young adults hold for their parents?

As my boss has told me, I put my life and career on hold to try and help and take care of my mom. And, frankly, I don’t think many young adults would do what I did. As my mom’s heart doctor told her a couple of times when my mom was being uncooperative and defiant, “I hope that you appreciate what your son is doing for you. Many sons would not do this for their mothers. I know. I’ve seen it.”

I miss my mom, but I don’t miss her suffering. And caring for her was exceedingly difficult, since my own health suffered and declined, including my own mental health. In talking to my therapist, it turns out that I have chronic depression, dysthymia. I didn’t even know there was such a thing as chronic depression, until I was told in a grief counseling session.

While visiting my dad in Fresno last weekend, I told him I started seeing a therapist for my depression. I explained how it feels and how long, I believe, I’ve been living with it. A grey cloud in my head has been discernible since at least ’07. That was the year I started to try and get help for mom.

IMG_0434
Fishing on calm waters with few people around is one of my favorite hobbies.

My dad listened mostly. I figured he’d be understanding, even though I know he has trouble understanding why I’m grieving, as much as I am, about mom. I told him specifically about two times late last year when I had trouble getting out of bed. That had never happened to me before. It no doubt occurred when it did because my mom’s health was declining and so poor, due to her kidney disease. He seemed the most concerned about me when I mentioned that.

I, also, told my dad I don’t need medicine for it, but that I do need more things to look forward to. I asked him to get the boat ready to go fishing. He said he would. He charged the batteries on it today and surprised me by saying, on the phone, that he was thinking about buying a bigger one. That brought a smile to my face. “Sounds good! Let’s go shopping!” I replied. That will definitely help get me through the year.