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.
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)
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.