This is my most raw, unedited, post. Not asking for forgiveness of errors. I almost didn't post, but I feel as if putting it out there will somehow make this all feel more real. I wrote every night about what happened from my POV (because I am naturally a neurotic journaling fool), as I felt and dealt with the heaviness of it all. And so it goes...
PART ONE
Day One: January 12, 2020
The call came around noon on a lazy Sunday. I had already assumed something was off.
I’m no clairvoyant, however, I feel things in some weird way that my logical, scientific mind cannot rationally explain. My husband continuously asked me if something was wrong. There was something wrong, but I had no way of saying I felt like something was terribly askew without it attributing to my weird bouts of anxiety attacks and overclock thinking tendencies.
So, like I do, I said nothing.
I’m no clairvoyant, however, I feel things in some weird way that my logical, scientific mind cannot rationally explain. My husband continuously asked me if something was wrong. There was something wrong, but I had no way of saying I felt like something was terribly askew without it attributing to my weird bouts of anxiety attacks and overclock thinking tendencies.
So, like I do, I said nothing.
But that call came as fast as it went.
As soon as I heard the words, “Has anyone told you anything?”, I knew something was wrong.
As soon as I heard the words, “Has anyone told you anything?”, I knew something was wrong.
My heart hit the floor.
My mind sailed to another universe, where all stars appear to be beautifully scattered; where black holes swallow all things within their reach, yet it is all unequivocally complicated with an array of color mixed with bright white blinding spots that no human recognizes on a normal plane.
It is uncharted territory.
Trying to define this type of phone call is impossible. Like my above run-on sentence.
My dad is dying. In a medically induced coma, with respirators, beeps, hisses, and the sound of air pumping in and out as if he were a worn, deflated tire.
I cried.
Then I booked a flight home.
Day Two: January 13, 2020
Three flights later, and I am back where I started.
No, my life didn’t begin here, but it did.
I was born in Southern California in 1985. The same place my parents married. Where my sister was born. Where my extended family currently resides. In 1990, my grandparents made the decision to move my dad out of California to better his life; fronting the cost, and ultimately setting up our family nucleus with a new life. You see, my dad had many demons, and to his parents moving was step one of ridding of them.
It didn’t work.
Well, it did, but only for so long.
You can cut corners, find dark shadows of solace, hide under your bed, but when they want you, they will find you. They generally win. These demons aren’t known as a losing team.
You can cut corners, find dark shadows of solace, hide under your bed, but when they want you, they will find you. They generally win. These demons aren’t known as a losing team.
I wrote my boss and 'need to know co-workers' because I honestly didn't know if I would return (but felt I owed them that), then booked a flight from Kansas to Phoenix,AZ within an hour.
Although we’ve had many scares with my dad, he had never been on life support until now. Yes, things have been awful, terrible in the past that I cannot seem to type out. But I just knew I had to be home this time.
Although we’ve had many scares with my dad, he had never been on life support until now. Yes, things have been awful, terrible in the past that I cannot seem to type out. But I just knew I had to be home this time.
I arrived at Sky Harbor after two connecting flights. I was hungry and angry as fuck on each plane, though the thought of eating made me want to vomit.
My sister and brother picked me up from PHX Sky Harbor, as if I were the last piece to a jigsaw puzzle that no one wants to finish.
The whole picture on the puzzle box is beautiful, but once the hard work is put in, and the puzzle complete, the picture is done. There’s nowhere to go from there but to take it all apart.
I was the last piece.
I felt as if my arriving was confirmation of an unraveling of years, memories and life. The end of a complete puzzle that no one, to include myself, wants to end, nor imagines having to. But there I was, curbside at an airport, feeling utterly numb as to what was next, or even why I came.
The whole picture on the puzzle box is beautiful, but once the hard work is put in, and the puzzle complete, the picture is done. There’s nowhere to go from there but to take it all apart.
I was the last piece.
I felt as if my arriving was confirmation of an unraveling of years, memories and life. The end of a complete puzzle that no one, to include myself, wants to end, nor imagines having to. But there I was, curbside at an airport, feeling utterly numb as to what was next, or even why I came.
I floated to the idea if I hadn’t booked my flight. What would change? Would it change? Would we be able to erase the damage because the puzzle wouldn’t be complete? Would it all go away?
I am a highly rational person. I know that regardless of what I did, there was nothing to be done. No different story to be written. My dad, the author of his own story. I am simply the reader.
We drove to the hospital after stopping at my mom’s place to grab a quick bite and to pick her up. They are no longer married, but didn't get divorced long ago. It's still fresh enough.
Mom has the ability to transform me into this volatile being that even I hate being. The least I could do was cross my fingers that I wouldn’t have to punch her in the throat.
Mom has the ability to transform me into this volatile being that even I hate being. The least I could do was cross my fingers that I wouldn’t have to punch her in the throat.
Once at the hospital, I asked to be alone for the first few minutes in my dad’s room, considering anyone else who had wanted that privilege has gotten it before myself. I needed to think, to salvage, to breathe. I didn't want to react in the presence of others. I am very private.
*If you are reading this right now, it's because I find you to be someone I can relate to, or at least trust. There's something about you that feels comfortable, even though I am awkward as shit.
It was such a strange moment walking alone into his room, number 204; knowing we were alone, and he was perfectly comfortable, yet I was anything but.
*If you are reading this right now, it's because I find you to be someone I can relate to, or at least trust. There's something about you that feels comfortable, even though I am awkward as shit.
It was such a strange moment walking alone into his room, number 204; knowing we were alone, and he was perfectly comfortable, yet I was anything but.
Emotions didn’t hit like I expected.
He laid there looking as if he could not be startled out of the most peaceful, deepest sleep of his life. The sleep most people can only dream of.
A ventilator made his breathing erratic, but not so much so that it was startling, like I imagined it to be.
Loads of wires and tubes; more than I imagined there’d be.
Loads of wires and tubes; more than I imagined there’d be.
And then I got the nitty-gritty from his nurse as I stood there, cursing him for leaving me with life altering decisions.
Nurse: “Are you the daughter everyone’s been waiting on? The out of state one?”
Me: “Yes. Why?”
Nurse: “Oh.”
Me: “What was that?”
Nurse: “Well, it's good you're finally here.”
That summed it up without saying much.
But I had learned way more than a simple phone call could give in that one visit with the nurse.
My dad has had issues before (heart issues), and currently had a pacemaker (defibrillator) implant device.
But I had learned way more than a simple phone call could give in that one visit with the nurse.
My dad has had issues before (heart issues), and currently had a pacemaker (defibrillator) implant device.
But what I didn’t totally expect was a list of issues beyond his heart:
Fourth stage liver failure.
Two kidneys nonfunctional
Heart capability at 11%
Fluid buildup in lungs
Inability to regulate body temperature.
That came as a quintuple whammy.
My sister and I are supposed to meet with a case manager in the morning to further discuss things. My sister, let’s call her ‘Erica’, spent an exhausting day dealing with the court system to gain guardianship/conservatorship while I was flying in. I have a bit of catching up to do in the morning with legal talk, and other things, to include finding a hair tie for sale.
I could use a messy ponytail. Or a hair brush.
I could use a messy ponytail. Or a hair brush.
Day Three: January, 14, 2020
***I went to bed around 2am (on 1/13/2020) after talking to my brother and beginning a journal for personal reference. I never intended to post this, I rarely, actually never, post super personal journal writings.***
At 4am, my dad’s night shift nurse, who we met earlier, called me to explain a change in his care. She explained that they had to change the drip that keeps his heart rate high enough so that his blood pressure remained stable. This new drip is a product that many common people know as epinephrine. Then she told me something that made me wake up my sister as fast as I could:
“This is our last resort. There is nothing we can give him beyond this to keep his blood pressure at what it is, which is not stable at all.”
The problem was that his blood pressure was already so low, especially in conjunction with his other issues when we had left the night before.
I woke my sister up, we got ready as fast as we possibly could and rushed to the hospital.
We had about two hours with the night nurse we had met before (and who had called me early that morning), talked with her a bit to pass time, and even had a cup of coffee, or two. All the while staring at the screen and listening to the sinister hum of machines.
We had about two hours with the night nurse we had met before (and who had called me early that morning), talked with her a bit to pass time, and even had a cup of coffee, or two. All the while staring at the screen and listening to the sinister hum of machines.
The balance of medications when five organs are failing:
Nurse ‘Kim’ explained that the reason they switched him from to epinephrine was because his blood pressure was no longer responsive to what they could max administer of the previous medication to keep his BP up.
But holy hell, even with the epinephrine, his blood pressure remained so low at 62/50, yet his heart was overclocking at 165-190 beats per minute causing major tachycardia. I’ll put it this way, the resting heart rate average is about 70-100 beats per minute. The average runner experiences a bpm between 120-170 on a good, hard run.
My dad was running, yet lying more still than he ever had in his life. To reduce the epinephrine was to reduce his blood pressure. His ‘running’ heart was tired, I’m certain, but keeping his blood pressure stable enough to stay alive. His beats per minute needed to remain high to pump blood at it’s working best (in layman's terms), which wasn’t working as best as it could.
My dad was running, yet lying more still than he ever had in his life. To reduce the epinephrine was to reduce his blood pressure. His ‘running’ heart was tired, I’m certain, but keeping his blood pressure stable enough to stay alive. His beats per minute needed to remain high to pump blood at it’s working best (in layman's terms), which wasn’t working as best as it could.
When shift change began at 7am, a nurse (‘Jen’) my sister had met the day before came in and greeted herself, knowing who I was. I think because bedside manner is a thing most nurses are good at, she waited a bit after beginning her shift to have a real talk with us about what should come next…
I went outside to call my husband and keep him in the know. Saying the words aloud made me question so many things about what I wanted, yet what I knew needed to happen. After our ten-minute talk, I walked back inside the hospital and was so disoriented that I couldn’t remember where I had come from.
A super nice lady, wearing blue cat scrubs and a shiny, large gold nose ring, could read my lost face and helped guide me. We rode the elevator up together, making small talk about how hospitals are so confusing, sharing my first laugh of the day.
I agreed in one hundred ways without saying them all. She went left, I went right.
A super nice lady, wearing blue cat scrubs and a shiny, large gold nose ring, could read my lost face and helped guide me. We rode the elevator up together, making small talk about how hospitals are so confusing, sharing my first laugh of the day.
I agreed in one hundred ways without saying them all. She went left, I went right.
Back in the room, my sister left to make a call, and what I didn't know then was that I captured the last picture my dad and I would ever have together while he was alive. It still hurts to look.
We still had the appointment set for 11am, but around 8:15am, nurse ‘Jen’ asked us if we’d like to speak to Palliative care before 11am. My sister and I asked to have a moment to discuss alone, and that we did. We agreed we knew what Palliative care meant…We knew what we had to do.
We still had the appointment set for 11am, but around 8:15am, nurse ‘Jen’ asked us if we’d like to speak to Palliative care before 11am. My sister and I asked to have a moment to discuss alone, and that we did. We agreed we knew what Palliative care meant…We knew what we had to do.
We told Jen to write the orders for what the hospital refers to as Comfort Care, but we knew the true meaning: Discontinuing life support measures with drugs that let the patient go in peace.
Around 9am, Jen informs us of a slight issue:
My dad had his pacemaker installed back in 2014 after having two heart attacks. She tells us that it must be deactivated before "Comfort Care" can begin. She explained that if it wasn’t deactivated, it would continue to revive his heart, though doing so would keep a viable, though low, blood pressure to keep him alive by a very fine thread. It would just be a continuous repeat of him basically struggling to keep going. She tells us the staff member who deactivates is in surgery and should be with us shortly.
My dad had his pacemaker installed back in 2014 after having two heart attacks. She tells us that it must be deactivated before "Comfort Care" can begin. She explained that if it wasn’t deactivated, it would continue to revive his heart, though doing so would keep a viable, though low, blood pressure to keep him alive by a very fine thread. It would just be a continuous repeat of him basically struggling to keep going. She tells us the staff member who deactivates is in surgery and should be with us shortly.
We Wait. Ten minutes of waiting felt like ten hours.
Jen comes back into the room and explains she isn’t certain how soon the staff member can show up but offers an alternative: A very strong magnet that is used in quick deactivation circumstances, like paramedic trucks and ERs.
My sister and I exchange a glance, unsure of this random yet common looking circular magnet, and agree to wait on the actual person trained to deactivate.
My sister and I exchange a glance, unsure of this random yet common looking circular magnet, and agree to wait on the actual person trained to deactivate.
Another ten minutes go by. My sister and I decide that Jen is a trained professional and wouldn’t recommend something she wasn’t certain of. We tell her we’re ready and she disappears to find the Palliative care physician who would be overseeing the process.
Around this time of waiting, my closest friend calls from across the country, and I answer.
9:27am time stamp
It was the first time I cried about it. My friend had lost her dad to alcoholism two years ago. She asks how my dad is doing:
“Not so good," I remember saying. "The final decision is made."
That was the first time I lost my shit. I had said it aloud. Saying it aloud made it somehow more real.
She knew what it meant, and we got off the phone
9:31am time stamp
The Palliative care doctor and Jen enter the room. They quickly explain things and my sister and I decide to leave the room while they remove the respirator and IVs, tape, and all the things that make one look sick and dying.
As soon as we stepped out, I caved into my feelings. I had never cried so hard in my life. I drank ten cups of water, shaking like crazy, wanting to reverse my decision but knowing that even doing so would help nothing at all.
As soon as we stepped out, I caved into my feelings. I had never cried so hard in my life. I drank ten cups of water, shaking like crazy, wanting to reverse my decision but knowing that even doing so would help nothing at all.
A woman walks out of dad’s room with a luggage looking thing she’s pulling. It was the person who deactivates pacemakers we were ironically waiting on before. She heads to the nurse’s station and stops behind the counter.
I'm certain she felt me staring at her.
She looks up from the paper she’s focused on, we meet eyes, and she gives me the most genuine “I’m so sorry” smile I will probably ever witness in my lifetime. As she lowered her head to continue with her work, her shiny, large gold nose ring caught the light. Her cat themed scrubs were no longer happy.
I'm certain she felt me staring at her.
She looks up from the paper she’s focused on, we meet eyes, and she gives me the most genuine “I’m so sorry” smile I will probably ever witness in my lifetime. As she lowered her head to continue with her work, her shiny, large gold nose ring caught the light. Her cat themed scrubs were no longer happy.
Within a minute, nurse Jen opens the door and we walk inside room 204.
The entire screen for his vitals had completely changed.
That 177 heart rate we’d seen right before walking out was now at 40 beats per minute.
That 177 heart rate we’d seen right before walking out was now at 40 beats per minute.
The only other vital visible was his PVC, or premature ventricular contraction (beat), which is the lower two chambers/ventricles. This arrhythmia causes extra beats.
Dad’s beats per minute continuously dropped, and way faster than I imagined.
Around 9:49 am, his beats per minute hit 0, but his PVC was at 17 and dropping by one, every two or three seconds.
Around 9:49 am, his beats per minute hit 0, but his PVC was at 17 and dropping by one, every two or three seconds.
At 9:50 am, dad’s heart skipped its last beat.
He was gone, and I broken.
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