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.
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.