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.
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.
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.
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.