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.
Mama would be in hospice at home a total of 9 days. After two days of many tender, loving moments with family and no significant complications, she’d start experiencing nausea and end up vomiting twice from her bed on day 3. That day was a year ago today.
This was on my mind pretty heavily for most of the day. I would actually end up sweeping and mopping her bedroom floor today because of it. The grief and restlessness motivating me to do so were clear. I went over the areas of the floor she vomited particularly well, though the floor wasn’t too dirty, since nobody enters that room now but me. And that’s just occasionally, mostly to open and close the blinds.
Overall, I’m thankful I’ve felt pretty good today, though. This is in stark contrast to how I felt for much of Monday, what was day 1 of hospice for mom. Those feelings of tremendous worry, fear, sadness and even some guilt that started to hit me when hospice day arrived reappeared, forcing me to relive it all over again.
My mind raced with tremendous stress and anxiety, on that day a year ago. Would the hospice staff and nurses be good and helpful? I heard of bad experiences with loved ones in hospice from friends and family. Even if they were decent, would my mom end up suffering too much in some way, still? Kidney failure is supposed to be one of the relatively easiest, painless ways to die, I was told. OK, but there’s still the matter of her serious mental illness. That was never successfully treated. I knew acute episodes were going to be inevitable. And the fact remained that she was coming home to die! I didn’t want mom to die! I fought so hard to protect her and keep her alive for so long!
On top of all this, we couldn’t even tell my mom she was coming home to die in hospice care. My mom wanted to live. She didn’t even believe she was really sick, due to her serious mental illness. For years, in fact, she regularly insisted that “devils” were attacking her organs and that she didn’t really even need medicine. I lied and told my mom that the new hospital bed, oxygen tank and medical support at home, all provided by the hospice, were just part of added support the hospital was giving us. Luckily, she didn’t question any of that.
Not being able to tell my mom, though, was to a large extent like a gut punch, the latest in a long history of gut punches. There was nothing else that could be done, though. Mom was suffering mightily. For months prior, she was declining markedly and becoming increasingly uncooperative and medically non-compliant. I knew the time was near and was actually frustrated that her doctors wouldn’t help me put together a plan for putting her into hospice. “She has the right to refuse treatment,” they’d say. I grew fearful that she’d end up dying of a heart attack at the house, perhaps alone or in my arms. Hospice was the more humane option, when all things were considered. I knew it was the right choice, as hard as it was.
The hospice staff and nurses ended up being wonderful. The nurses were exceptionally responsive, skilled and caring. They’d end up coming every day. What a blessing! We’d have some difficult times with my mom, but overall, things went as good as can be, considering the circumstances. And for that, I’m grateful.
But seeing my mama increasingly decline (slip away) was probably the hardest part for me. Day 3 was the marked start of that. From then on, every day, she’d get weaker and exhibit more symptoms that death (her transition) was nearing. She’d begin to lose her appetite. Her physical strength would begin to leave her. She’d start hallucinating pretty regularly, too. She’d become bed ridden. She’d start frothing at the mouth….
A small piece of pumpkin pie, I believe, was the last meal she’d have. She loved pumpkin pie. In hospice, patients are allowed to eat whatever they wanted, within limits. That was on day 5, I believe. My memory of events and the timeline do get a bit fuzzy. It’s the trauma, I’m told.
February arrived with a wallop. I was instantaneously taken back to this time last year, the month my mama passed. The memories and flashbacks began occurring with a feeling of slight nausea. That hasn’t happened before, at least not since mama entered hospice the second week of February.
As February approached, I’ve wanted to write a post on my yearlong journey with grief. All this has changed my mind. My emotions are raw enough right now. I need to be careful. I’ll be visiting enough memories and experiences naturally. I don’t need to immerse myself any further.
Instead, I thought I’d post a bit of our hospice experience. I believe I still haven’t processed the time and events fully, so maybe this would help. Today, the 16th, was the day she entered hospice. It was initiated in the hospital. She had been admitted the day before, due to breathing complications. Mama had stopped dialysis and started experiencing more fluid retention, exacerbating her congestive heart failure.
As was usually the case, getting mom into hospice was fraught with immense stress and hospital/medical bullshit. Here’s a short recollection of how the decision was made…. by me:
A year ago today, the hospital gave me the authority to make decisions for mom. I had to put her into hospice. She had stopped dialysis and was increasingly medically non-compliant. It was a decision you never want to make. I didn’t hesitate when they asked what I wanted, though. Mama’s suffering was too great.
It was a bit fortuitous the way it played out. Top to bottom, authorities and health care workers gave her too much agency. “She has the right to decide/refuse treatment,” they’d say. On this day, her doctor and the hospital social worker were in the room with me together. That never happens.
The doctor walked in while I was talking to the social worker. At that point, the social worker was being super unprofessional, casually talking to me about how downhill San Francisco had gone. How dirty it is and how it “smells like pee.” I’m pretty sure I made her feel uncomfortable. The moment she walked into the room, minutes before, I told her what I was expecting from them.
Hospitals have traumatized me. I was hyper vigilant and told her my mom is not being released, until a plan is in place for her to be adequately taken care of, whether at our home or a nursing facility. The doctor walked in and, after a short conversation with me, straight up asked the social worker, “Does Josie have mental capacity to make decisions?” The social worker, without assessing my mom directly, said, to my relief and surprise, “No. She has a serious mental illness.”
The social worker only knew she had a SMI because I told her she did during our short conversation. She didn’t assess my mama directly like I believe she is required to do. Mama was, luckily, sleeping the whole conversation, just a few feet away. (Hospitals are dumb. Their staff will have conversations about their patients’ mental states right in front of them.)
Interestingly, many times in the past, even when authorities knew mom had a SMI, they still always hid behind their civil rights language and laws: “She has the Right to refuse,” they’d say. This even when she was clearly in a psychotic state.
When I look back, maybe it was God or the universe helping me and my family. Mama had been saying Moses was coming for her, after all…. (To be continued)
(This is a revision to a post I wrote in December 2016. It lost its focus halfway through, I recently realized.)
The end of the year holidays and winter cold were some of the hardest times for me and my family, since around 2010. Since then, my mom’s housing was unstable at best. The worst of it was punctuated by her being effectively homeless for two of those years, 2010-2012. In that time period, very short housing stints aside, she primarily lived in a car.
I’d do my best to spend Thanksgiving and Christmas with her, regardless of her immediate living situation. From the Bay Area, I’d drive down to meet her in Bakersfield or Fresno, take her to Marie Callender’s, her preferred restaurant choice, and usually put her up in a hotel room, so I could spend extra time with her.
I’d, also, take her shopping for some clothes and undergarments. She’d regularly have minimal clothing. Clothes that she’d buy or I’d buy for her would, typically, disappear within a couple of months.
She’d claim people would steal them from her car or from the places she was living in. I knew, though, that she probably threw them out. That was her modus operandi, after all. When pressed enough with questions, she’d say they became contaminated with toxins or spoiled by evil spirits. “The devils tried them on!” she’d exclaim.
This is what the holidays were for me. There was no real respite or joy from my time off of work. It caused me immense emotional pain to visit my mom, since I knew my mom preferred to live with either me or my sister. I despised the system for her feeling abandoned and/or unloved.
We had tried to care for her, of course, in the past. Me, in San Francisco, in the summer of 2009. My sister, for a few months, in San Diego in 2005. But it proved to be too difficult and stressful.
My mom, unfortunately, refused to accept psychiatric treatment. While she had her “good days” and could appear functioning or “normal,” going back to at least 2009, I could discern she was in a psychotic state a majority of the time.
Delusions were definitely there most of the time. She believed and openly claimed people and the F.B.I were spying on her and following her. She, also, experienced hallucinations. The “good voices” were the “Gods.” The “evil voices” were the “devils and witches.” She would “talk to herself” for hours, including throughout the night, at times. Interestingly, in more recent years, she learned to talk to herself quietly, outside of acute episodes. If I couldn’t hear her, I could still see her lips move.
Her medical and psychiatric conditions would both deteriorate over the years, from her not being able to take adequate care of herself. In fact, beginning in around 2014, hospitalizations would become a regular occurrence. In my estimation, she’d be hospitalized every two months, on average.
By this time, she had developed congestive heart failure, cataracts and a schwannoma (a “benign” brain tumor), to go along with her diabetes. Like clockwork, she’d regularly stop taking her various medications, which would then exacerbate her medical problems. Her CHF would cause breathing/respiratory problems and her glucose level would become life threatening, often times reaching over 400! In 2015, this would culminate in my mom and I spending our Christmas in a hospital. She would be intubated for four days, including Christmas day.
By then, I had had enough. I couldn’t take seeing my mama’s health deteriorate, particularly her physical health. At only 63 years old, she’d have to walk with a cane and, sometimes, a walker. There were even times when she had to use a wheelchair.
I remember the first time I saw her in one. She looked so feeble and dejected, with her head hung down and food on her shirt. My mom was prideful, beautiful and strong! Despite all she was going through, she’d still do her best to assure me she was doing OK and getting better, when I’d inquire about her condition/situation on a visit or on the phone.
In mid-2015, I decided to start looking for housing for my mom and I. It took me longer than it should have. One place I secured, in December of 2015, fell through when the dishwasher sprung a leak and flooded the floors, the very first week I moved in. When I began my search, I certainly didn’t think I’d end up in Modesto. I signed the lease for a nice single family home in mid-February 2016 and moved mom in the following week.
As difficult as most of this past year has been living with my mom, I find much peace and consolation in knowing she’s physically safe. In the least, I don’t have to spend any sleepless night worrying about where and how she is, like I used to before. It hit freezing temperatures for the first time this winter this past week. Letters my mom would write to me, exclaiming how cold it was living in the car, have given way to complaints that the house is too cold at 65 degrees.
Tomorrow is Christmas and my mom has been able to enjoy her first Christmas tree in about ten years. She’ll, also, have presents to unwrap and a delicious meal made by our friend, Shari. She’s still greatly distressed psychiatrically, but I have, more or less, been able to help medically stabilize her. She takes her medicines and goes to all her doctor appointments, mostly. For me, my blood pressure is the best it has been in years. For these things, we are grateful.
(My beautiful mama passed away in late February last year. While she was weaker, from stage 4 kidney disease, and more aloof in her last months, I did the best I could to make sure she had a good Thanksgiving and Christmas, nonetheless. She was, of course, greatly missed this past holiday season. I love you mom! Happy New Year!)
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.
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.
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.
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.
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.
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.
Since my mom passed away 5 months ago, I readily admit that I’m experiencing an existential crisis. My mom needlessly suffered a long time. Going back to when more obvious signs of her serious mental illness (SMI) began showing in ’03, we are talking at least 15 years.
My family and I had to helplessly watch her suffer too. For me specifically, I watched her suffer every day the last two years that she lived with me. Not a day went by that I didn’t deeply worry she could die or slip into a coma, so grave was her physical condition. Her psychiatric condition was such that I had to watch my mom live in daily distress. She was a prisoner to her delusions and hallucinations.
Her 8 days in hospice went well enough, all things considered. But for us, specifically our relationship, there was no real closure. You see, we couldn’t tell my mom she was coming home from the hospital to die. She didn’t want to die.
I nervously made conversation with her when she arrived back at the house from the hospital. It was difficult to find the right words. It usually was, talking to mom.
Me: “They [the hospice] came suddenly for you, huh?”
Mom: “Yeeaaa,” she replied disapprovingly.
Me: “No more hospitals?”
Her: “I hope not,” she said dejectedly. She loathed hospitals and was very tired and weak, after stopping dialysis.
Me: “OK,” I said. I didn’t tell her my full thoughts, though. “OK mom…no more hospitals.”
My counselor says I’m doing surprisingly well. I attribute it to my family’s strength and fortitude, particularly my mom’s. What a fighter she was! I, also, attribute it to the grieving and heartache I experienced all those years prior to my mom moving in, though.
The first year of the two she’d spend homeless living in a car, for instance, was probably my lowest point. Getting through that intact helped me weather future storms.
Still, I know my ability to find adequate peace and happiness, moving forward, will largely depend on my ability to understand my mom’s suffering in a way that provides me comfort and mitigates my deep anger and sadness. This is largely a spiritual inquiry, I realize
I don’t really know where to begin, though. I’m not religious in the Christian sense, at least not anymore. My mom loved the Lord and she instilled her love and understanding of the bible’s teachings to me and my sister from an early age. Going to college, as it can do to people, made me more secular, though.
There was a time in my early twenties that I considered myself an atheist, in fact. As time went on and I reached my late twenties and early thirties, I became more agnostic. I don’t doubt part of that change occurred from the heartache I endured, seeing my mom’s initial onset and then condition deteriorate over time.
I’d gravitate a bit towards Buddhism, mostly through my training in Aikido, a martial art. The founder of Aikido, Morihei Ueshiba, consciously developed Aikido as a physical embodiment of his spiritual views and principles. He specifically adhered to Shintoism, an ancient Japanese religion. By the time Ueshiba began practicing it, though, it was heavily influenced by Buddhism. There are definite similarities.
Like Shintoism, there are many deities and prayer rituals in Buddhism. My interests, though, are in cultivating certain principles and “states of being” valued in Buddhist philosophy such as empathy, peace and harmony with others and the environment, and being in touch with the present/one’s surroundings. I’ve found developing these very useful in helping me deal with immense stress and anxiety.
Indeed, I believe both my Aikido training and study of Buddhism helped me become more aware of my internal emotional processes. This allowed me to better mitigate my pain and fear, my depression essentially, through the years, especially during the time period when my mom was homeless.
This isn’t to say I didn’t ever pray or show reverence to Christian tenets and practices. I prayed with and for my mom. I even visited a Catholic priest with my aunt years ago to get insight as to what was happening to my mom. He assured us that it wasn’t demonic possession (I already figured as much.).
This continued when my mom moved in with me in February ’16. When I prayed, though I may have said the word “God,” I didn’t really pray to the Western, biblical one. To the extent I was praying to something at all, it was to the universe or to my ancestors. I prayed at times to my grandma, my mom’s mom, to help us in some way, too. I essentially prayed to anything that could and would help. It didn’t seem like anything was listening, though, at least at the time.
Now that my mom is gone, I’m trying to remain as open as possible to the spiritual possibilities and facets of life. Admittedly, I contemplate from time to time that there may very well not be anything greater than the physical world and, maybe someday, I’ll draw that conclusion. But right now, for me to accept that entirely would lead to the most cynical and depressing states of mind.
Fortunately, my perception has, also, changed already, in a way that allows me to see things anew. I truly believe my mind and senses are the clearest they have been in years. This has made some of the journey a bit more painful, as the depths of my mom’s suffering are easier to see and feel. But it has also helped me see and appreciate certain events as something greater than mere coincidences. In other words, as assurances from the universe, and even maybe my mom, that things are going to be OK and that I do have help. I wasn’t able to see this before.
To share just one example: After some mulling, I decided to buy the cemetery plot next to my mom. While we buried her in the same cemetery as her parents, she’s immediately surrounded by strangers. I didn’t feel comfortable with that, ultimately.
I didn’t realize it right away, but the account number I was assigned for my plot is “5150.” I couldn’t believe it when I noticed it on the paperwork, while sitting at my office desk at home that day. It’s not an exaggeration to say that that sequence of numbers fully characterizes the nature of our relationship for the last 10 years. 5150 is the California legal code for involuntary hospitalizations and something I would try to have done to my mom multiple times, in the hope she would be stabilized.
If my mom was trying to send me a message, that would be a way she’d do it. She had a sharp sense of humor and was definitely blunt when she needed to be. When I saw the numbers, I just smiled, shook my head and said, “OK mom. Good one.” I didn’t feel like she’d be mad at me, though she’d despise me trying to hospitalize her, while she was alive.
After all, she used to like to tell me that someday the “truth will set me free.” She’d say it in reference to her delusions and hallucinations. They took a very religious form. When I’d get frustrated, I’d sometimes throw it back at her. “The truth will set you free, mom.” I can only hope that she would know and accept the truth now.
To touch on some science, I know the mind can see what it wants to see. But events like this one seem too improbable to accept as just coincidences. And I know one thing is absolutely certain. That things like this, patterns or connections between events and my family’s history, didn’t happen before my mom passed. If they did, my mind and heart weren’t open to them. The suffering and depression were too great. An event like that above, I’d just as likely interpret as more “bad luck.”
That was confirmed as much by a Buddhist counselor that spoke on trauma at a recent meditation workshop. He said that people need adequate breathing space and refuge, in order to cultivate their minds, bodies and spirits. He’d go on to say that people who are in life and death circumstances, especially those who have developed trauma, have a much harder time cultivating the calmness and clarity (i.e. being present) necessary to make and feel connection with people and the world/universe around them.
Heck, when I think about things in hindsight sometimes, I now see that, as hard as things were, things worked out OK for us in many ways. There’s also the “coincidence” that my mom nearly passed away exactly two years after she moved in with me. It was like the universe or God was saying, “I’m or we are watching and with you.” That was confirmed recently by the pastor of a local church my mom and I attended. In assuring me that my mama was looked after, even through her sickness, Pastor Lyn said, “Jesus is behind us, beside us and in front of us through our trials.”
Whatever the “truth” is, I’m grateful I’m finding some solace in things I’ve experienced and seeing things anew. Little rituals, like honoring a family altar I put up in my living room, help too. I don’t know where this path I’m on will end. But I do know that as long as I let my love for my family and principles, like justice for the poor and misfortunate, guide me, things should workout. I got through the worse of it, after all, OK. I’m pretty sure both Jesus and Buddha would agree.
It has been a little more than three months since my mom passed away. Sadly, her scent is virtually gone from her room, but I am doing the best I can to honor and cherish her memory. Indeed, this is a central part of my healing process.
I try to visit her grave weekly in Madera. I’ll usually stop there for around thirty minutes, while on my way to visit my dad in Fresno. On special occasions, like Mother’s Day, I’ve stayed for more than an hour.
Last Friday, June 1st, was her birthday. Mama would’ve been 67 years old. For the occasion, I dressed up and took her a dozen red roses. She loved roses. Unfortunately, she wasn’t able to enjoy them for around the last ten years of her life. She, in fact, didn’t want any roses or plants near her because she thought that toxins could enter her body through them.
That’s what my mom’s untreated serious mental illness made life like for her. She literally couldn’t stop to smell the roses. Every day for her was a struggle. Seeing her suffer and deteriorate was a living nightmare for me.
One of the first things I did after my mom passed was throw out all her medicines. At any given time, my mom was taking around ten different ones for her various serious conditions. She was prescribed dozens of different ones in recent years. This includes “anti-psychotic” drugs like Zyprexa and Risperdal, but she never stayed on those long enough for them to have any effect on her.
The Risperdal was, ironically, prescribed to her during one of her last hospitalizations in January. They had never bothered to try and treat her SMI before when she was hospitalized. Predictably, she refused to take it after the first dosage because it made her feel drowsy.
I actually told the hospital staff to not give or prescribe it to her. What was the point? Why prescribe her psychiatric medicine without her being under the active care of a psychiatrist? The hospital didn’t even bother giving us information as to how to find one. They prescribed it anyways. It was waiting for me the next time I went to the pharmacy. Money, money, money! The game is rigged in the favor of the pharmaceutical companies.
Anything left from her week in hospice I threw out immediately too. My house and her room are going to be a sanctuary of peace and good health only. I returned pictures she had placed in plastic bags and drawers to keep safe from “being stolen” to their original locations. I placed her personal possessions, like her Bible, to prominent places on her dressers and book shelves. I bought a house plant for her corner table because I want something alive and beautiful to be in there.
These rituals and acts seem to be helping me. The feelings of guilt, which experts say are inevitable, are subsiding. Increasing my physical activity, reconnecting with extended family and attending counseling are all helping too. My trauma counselor told me yesterday that it was like I was in a war and I was the medic, the frontline and the commander all at the same time. I know it’s going to take great effort and time to calm down from that and sort things out.
He also said that I’m doing really well. I like to think it’s because I have my mom’s fortitude. She was so strong. Her faith never wavered! I, also, like to think that I have her guidance now. I’m asking her for it every day.
My world has been turned upside down. I’m starting a journey without the constant anxiety and fear of what may happen any minute to my mama. That struggle went on for at least fifteen years. I know she’d want me to do what makes me happy. I’m trying, mama.
The homelessness crisis in San Francisco has put a spotlight on another crisis, the plight of people with serious mental illness (SMI) who are too sick to help themselves.
According to the Treatment Advocacy Center (TAC), approximately 3.3% of the U.S. population (8.3 million) live with bipolar disorder or schizophrenia.
As any SF resident knows, the intersection between homelessness and SMI is a significant one. According to TAC, around 30% of the chronically homeless are reported to have a SMI.
Of course, mental health services for this group are available. But for too many, they are inadequate, if not impossible to receive. In fact, about half of people with SMI are untreated at any given time. Without effective treatment, too many are left to suffer in the streets or their cars, under bridges or subway tunnels.
To address this crisis, local State Assembly representative Scott Weiner, with support from SF mayoral candidate London Breed, is sponsoring SB 1045. The bill would make it easier for a court to place a conservatorship on individuals who are deemed unable to adequately take care of themselves, as a result of their serious mental illness. As a former conservator, I understand they are absolutely necessary for many people with SMI, but Weiner’s and Breed’s solution falls well short.
In socially liberal San Francisco, from Patient and Disability Rights groups, to the ACLU to social justice activists, the bill has plenty of critics and opposition.
Yet, how humane is it to let people with SMI suffer from psychosis, and in many cases, untreated and deepening psychosis? The research is clear that the longer people go without adequate treatment for their SMI, the more difficult it is for them to recover. This group is also extremely vulnerable to physical and sexual violence. On Twitter, Wiener regularly makes this point.
And the reality is current law already allows authorities to involuntarily hospitalize (i.e. 5150) someone. Part of the problem is that the legal concept “gravely disabled” is interpreted far too narrowly.
Basically, one is gravely disabled when he or she is unable to provide food, clothing or shelter for themselves, as a result of their mental illness. However, authorities, from police officers to field clinicians, often say that homeless people are “self-directing” enough to not warrant a 5150 hold “as long as a person on the streets can say where they are going to sleep for the night,” even if it means sleeping behind a dumpster.
This despite the same person endangering themselves by running in traffic thirty minutes earlier and not actively being under psychiatric treatment for their known SMI.
Weiner’s bill recognizes this absurdity and includes a person’s medical and psychiatric history in evaluating whether or not a person needs to be involuntarily hospitalized and placed under a conservatorship.
Where will these people be treated, however? As mentioned above, about half of people with SMI are untreated at any given time, meaning their chances of experiencing acute psychotic episodes are very high. They will require immediate stabilization. For many, that means both medical and psychiatric stabilization and treatment.
Are there enough inpatient psychiatric beds available for the necessary medium to long-term stays? Nationally, the number of inpatient beds available has been slashed in the U.S. over the course of many decades. For example, from their historic peak in 1955, the number of state hospital beds in the United States had plummeted almost 97% by 2016.
This no doubt has contributed to the fact that prisons and jails are the biggest mental health treatment centers in the country.
Beyond a small number of advocacy organizations and outraged family members of loved ones with SMI, nobody talks about this national disgrace. As one such family member, imagine my surprise when I learned SF mayoral candidate Mark Leno makes this very point.
From his webpage: “Mental health policy experts recommend supplying 50 in-patient psychiatric beds for every 100,000 residents in the total population. In San Francisco, that would add up to over 430 beds. And yet, a 2016 policy analyst report showed that San Francisco only offers 163 beds.” He goes on to say that he will add 200 inpatient mental health beds, doubling the supply.
Without doing this, Wiener and Breed are putting the cart before the horse. At worse, it looks like they are trying to appease business interests in the city that want the streets desperately “cleaned up” more than they are trying to help those with SMI and their families.
Because you have to wonder, why is this all of a sudden an issue now? No SF official was interested in helping me when my mom was living with me in SF in ’09. In fact, SF General Hospital released my mom prematurely on more than one occasion, even though she clearly needed psychiatric treatment. They fail to treat or release people prematurely because they don’t have the bed space. A representative in SF Behavioral Health told me as much. I was her conservator at the time and the city failed to help me help my mom.
So again, why? Yes, part of it is the increase in the homeless population. The other part is the “nuisance problem” being caused by increased homelessness. It is hurting the business climate, plain and simple. This should not be the main basis for helping people that are homeless, especially those with serious mental illness and addictions.
The U.S is ranked 29th among 34 countries in the Organization for Economic Cooperation and Development (OECD) in supplying psychiatric beds. It is a sign of inadequate healthcare, not freedom.