Death of My Father: A Personal Grief Journey

Though I can’t say for sure if it’s been the most difficult part of my grief journey, disbelief has made grieving extremely difficult.

When you think of a parent dying, you almost certainly picture it far away in a hazy future. They’re very elderly but ideally not incapacitated before they go. Death quietly sneaks them away in the middle of the night. You’re in your 50s or 60s, and while this loss will change you forever, you had to have expected it. They lived a long, happy life. Or at least, that’s what we’d all like to picture.

So what happens when a parent is wrenched away from you at a young age? You simply can’t process it.

If you had asked me what I thought my relationship with my father would be like, say, the month my parents separated and we moved out, I would have told you that I’d spend a few decades pretending he didn’t exist (assuming he never sought help for his alcoholism) until he died. Did a cirrhosis diagnosis cross my mind? Fleetingly. But never did I think that he would be diagnosed barely one year after we left at the age of just 42 years old.

There was a point during my dad’s second hospital stay where a doctor explained his life expectancy to us. Based on my dad’s Child-Pugh score, he had a roughly 50% chance of dying within the next year. Within two years? Much higher. Even the rates of survival after a transplant weren’t exactly encouraging.

As many people are when confronted with their own mortality, Johnny was in denial. He refused to acknowledge how serious his condition was. I started crying in the hospital elevator on the way home that night. A year?! How could that even be possible? I knew deep down that a liver transplant was not going to happen. He didn’t have insurance or disability yet. More importantly, you have to stop drinking and smoking for at least 6 months before you can be put on a liver transplant list. I still had hopes for my dad’s sobriety, but I knew he would never be able to give up cigarettes, too. Believe me, I had tried every guilt-tripping trick in the book as a kid! For the first time since I was 17, I had actually wanted him to be there for my college graduation, my wedding, the birth of my children... I began to mourn these losses that I wouldn’t have even considered losses just 2 weeks before. Funny how quickly things can change.

After the drinking started again, I began living my life while waiting for the other shoe to drop. One day, I would have to deal with his death and all of the funeral arrangements and other tasks that came along with it. Still, I mostly went back to living my life as I had before, ever since I started ignoring him in high school: in denial. I lived every day ignoring my hurt and pain. I literally pretended my dad did not exist even though he lived in the same small town. I deleted family friends close to him off of my Facebook, avoided places he frequented, and went on with my daily business like nothing had happened. The few times I did see him in public startled me. It was like seeing a ghost. Once I was walking out of Walmart with my best friend and her daughter at the same time that he was walking in. He was wearing sunglasses, cargo shorts, ratty old tennis shoes, and a shirt my mom had bought him in Boston in 2011. I was so surprised and wanted to avoid talking so him so much that I literally ran away and hid behind my best friend’s car!

Based on how intense my avoidance of my dad was, I should’ve seen the avoidance of my grief coming as well. It’s easy to slip back into an old habit. Four classes and assistant directing a play kept me very busy for the first two months after his death. Looking back, I needed those distractions to keep me from completely losing my mind. Grief and mourning was still a very big part of my life at that time, especially with daily reminders of my dad through different death tasks I had to complete. But it still didn’t really feel real. Why doesn’t it feel real?

My brother and I decided to have half of my dad’s ashes buried while we spread the other half at his favorite places. This way, parts of him will be where he loved to be, but we also have a grave to go to for closure. I still haven’t been able to bring myself to spread any of his ashes. On the morbid (yet slightly humorous) side of things, part of that is because I literally don’t know how. What am I going to do, just stick a cup in the urn and sprinkle a little bit of ash out? Portion him up into little bags to take with me traveling one day so I can spread him all around the world? It’s definitely odd and something I never had to think about before. On a more serious note, I know I haven’t been able to start spreading his ashes because I’m not ready. How can I be, when even looking at the urn sitting on my shelf right now, it doesn’t seem to make sense that he’s dead?

I hope that time will make me believe his death more. I assume I have to at least accept his death to move forward, even though I don’t believe in a straight path through the stages of grief. In some ways, my dad’s death is very real. Even still, some days I have to actually remind myself that he’s dead. Of course part of me knows that fact, but there’s still a part of me that won’t let go. Maybe I’ll never fully believe it because of the circumstances. Maybe I won’t believe it because he really isn’t dead yet, as long as people who knew, loved, or were told about him still walk the earth. But one day his stories won’t get passed on. His grave will be abandoned and forgotten. People will cease to exist, and so will his memory. And maybe that’s okay.

Much love,

CONTENT WARNING: This post contains graphic descriptions of death and dying.

If this blog is supposed to be about confronting my grief head-on, I might as well start with the most difficult topic of them all: the last 3 days of my dad’s life. This will be a long post.

I’ve been looking at this picture for a while now. It’s actually very hard to let the memories of those last few days come back to me. After all, I’ve been pretty good at keeping them at bay for the past 8 months.

I’ve heard that there can be some PTSD involved with watching someone die. Based on my own experience, I’d say that’s true.

My dad was admitted to the hospital Thursday night, January 4th, 2018. He was having trouble walking and had lost some vision (he described it as looking through “black leaves”). One nurse (or doctor, I honestly can’t remember) told me that it’s likely he had a minor heart attack sometime before or during his admission to the hospital. He had low sodium and low blood pressure, and his liver and kidneys were both failing. I feel like someone said he had low blood sugar as well, but again, I can’t remember.

As mentioned in my introductory post, I was estranged from my father beginning April 5th, 2017, when I found proof that he was drinking again. I had made family friends aware of the fact that I wanted nothing to do with my dad unless he 1) decided to start attending AA meetings or 2) was on his death bed. I wanted to help my dad and be in his life, but I refused to enable him while he committed slow suicide by alcohol. I didn’t even want him to stop drinking right away, necessarily. I just wanted him to attend an AA meeting. Unfortunately, he refused to go to these meetings. He was exhausted and couldn’t fight the depression and alcoholism any longer. It consumed him.

My family friends respected my wishes. They didn’t contact me until the night my dad was admitted to the hospital. I told them I would see how he did overnight before deciding to come to the hospital or not. He didn’t show any improvement, and at the urging of my godmother, my brother and I went to the hospital at about 10:00am on Friday, January 5th.

Seeing my dad so close for the first time in quite a while was unsettling. One symptom of cirrhosis is ascites, or the abnormal buildup of fluid in the abdomen that can occur when the liver isn’t functioning properly. This caused my dad to be very swollen in his abdomen and appendages. He had also gone completely gray in the last few months before his death. He had started getting some gray in his goatee around age 30, but it was still strange seeing him with an all-white beard and gray hair. Jaundice caused him to have a yellow skin tone, as well. I remember walking into his room and going “Hey, Dad. Long time no see, huh?” He was a little surprised to see me but not as surprised to see my brother.

I don’t remember much of what we talked about during those few hours that he was relatively lucid. I know we didn’t talk much to begin with, but he started to say some odd things as he got more delirious. He thought the black rubber band around the base of a security camera on the ceiling was a snake that was going to fall on top of my brother. He also threw a comment or two about the Civil War out there, acting as if he was responding to something Garrett said. He kept asking us to get his wallet so we could take some money from it, even though his wallet wasn’t in his hospital bag. As he became more delirious, he insisted on moving around in bed too much and then demanded to get up and walk around. He was frustrated and thrashing about a little. This movement caused him to pull out some of his IVs. This led to him getting a central line in his neck around 3:30pm that Friday afternoon. He was given an anti-anxiety medication that caused him to sleep for several hours.

I don’t remember what I said to my dad before I left the room so the hospital staff could insert his central line. I hope that I told him I loved him. I don’t beat myself up about this, though, because I didn’t really understand that he would end up being sedated from this point forward. Honestly, I don’t know if it would have made a difference to him at that point with how agitated he had gotten in just a few hours.

After about an hour, we were allowed to enter the room again. My brother had to go home, so it was just me in the hospital for a minute. The first family friend to come see my dad once I was there was Dal. He came around 5:30pm that Friday and stayed for about an hour and a half. I am so incredibly grateful that Dal was there at that time. My dad had thin blood that kept leaking out from his central line. The nurses had to come in and attempt to stop the bleeding so that the central line could work correctly. His low blood pressure meant that he couldn’t have pain meds, and even while sedated he began thrashing around from the pain caused by working on the central line. At one point, three nurses, myself, and Dal were all holding my dad down while another nurse worked on his neck. I talked to him and tried letting him know that I was there, it would be okay, and to just relax and let the nurses help him. I teared up here, but didn’t cry. I attribute that to Dal giving me strength while he was there. My poor dad was so swollen with ascites that there were indents where my hands had been on his legs for several minutes after I stopped touching him. It was extremely sad.

At this point, I decided I would stay in the hospital overnight. Another family friend, Sandy G., came to sit with my dad while I went home to shower and pack my back with 2 days worth of clothes and supplies. I remember an argument with my family about preparing to stay there overnight for days. They didn’t want me to overextend myself right before I started a new semester of college on Monday, but being the control freak and worrier that I am, I refused to take their advice and headed back to the hospital around 9:30pm that night.

In the end, I’m glad I ended up there for the night. Though he had previously been able to keep his airways clear himself, Johnny’s lungs began to fail around midnight that night. I went from reading Stranger Beside Me in my pajamas while my dad snored to looking up to 5 nurses and the hospital supervisor looking at me for answers. I remember someone asking me if I understood what I’d been told. I responded something along the lines of “He could breathe before, but now he can’t. So if you don’t do this, he’ll stop breathing and die.” I was asked if I wanted to let the staff intubate him, or if I would refuse any more life-saving measures. I was alone, my uncle had started driving down from PA to come to the hospital, and most friends hadn’t been in to see him yet, so I told them to intubate my dad. 

After I gave the go-ahead for intubation, the house supervisor walked me to a holding room to wait out the process. She praised me for being so rational in making my decision, especially when I was so young and my parent was involved. I chalked it up to the many stories I’d read on nursing forums of families behaving irrationally while making care decisions for a loved one. I didn’t want to be that family member who caused her loved one to suffer when there wasn’t a chance of survival, but I knew I couldn’t handle the situation alone. I started calling my family members in an attempt to get them to the hospital. I was starting to panic, especially since I’d been told the intubation may not be successful. Unfortunately, my family had their phones on vibrate without thinking. After many attempted calls and frantic messages, I got a friend in town to go knock on the door in an attempt to wake my family up. When that didn’t work, I got an ex-boyfriend to knock on my parents’ bathroom window to wake our dogs up. The dogs created enough of a racket to wake my parents up about an hour after the intubation process began. Within another 45 minutes, I wasn’t alone anymore.

Shortly before my mom and brother got back to the hospital, I was called back into my dad’s room. His intubation had been pretty messy. One nurse told me that he had spewed blood across the room at one point, which is part of why it took so long to get family members back in the room after the intubation. He was completely sedated from this point forward. Whereas any adjustments to his central line had caused grunts of pain and resistance before the sedation, cleaning the central line with alcohol didn’t cause my dad to so much as flutter an eyelid after the sedation. I personally don’t believe that he heard anything after this point, but no one really knows.

The next day passed by in a blur. Johnny had esophageal varices that were bleeding. A scope was scheduled to look at these varices and determine whether or not they could be banded off to stop the bleeding that was blocking his airway. A paracentesis (draining off of the ascites) was also on the schedule if my dad became stable enough for the procedure, but he never did. Family friends brought my brother and me food, money, support, and love. They visited throughout the day and talked to my dad and us about memories and everything else under the sun. At some point, my dad was put on a ventilator to keep him breathing artificially (previously the tube had allowed his airway to remain clear while he breathed on his own). A few breathing treatments were done throughout the day. During the first breathing treatment, I asked the respiratory therapist to be honest with me when I asked my next question: “Do you really think he has a chance of survival based on his current state?” She answered that while sometimes miracles happened, she thought it very unlikely that he would recover. I cannot explain how much of a relief it was for someone to be honest with me like that. Hope and positive thinking are very important for some people when their loved one is in the hospital. I didn’t want to stop hoping that my dad would have a chance to live a little longer, but I preferred a realistic mindset over an idealistic one. I needed to prepare myself for the worst case scenario while hoping for the best. I remember googling “organ failure cirrhosis” to read up on his condition. After a cirrhosis patient’s third organ failed, the mortality rate was so close to 100% that a percentage wasn’t even given.

After many visits from family friends, nurses, and doctors, my uncle arrived in Florida that Saturday evening. We gave him some time to eat, settle in, and rest (he had driven straight to FL from PA, only stopping at rest stops for a few hours of sleep at a time) before I asked the night nurse, AJ, to start the process of taking my dad off the ventilator. Consent from a few different doctors was needed, and then I had to sign the paperwork to officially begin the process of his death, essentially.

The daytime nurse, Cassandra, had warned me that his death could be potentially messy with the esophageal bleeding my dad was having. Because of this warning, I asked that the respiratory therapist aspirate the blood so that my family didn’t have to watch my dad choke to death.

At about 10:41pm, my dad’s ventilator was removed. The blood that started to come up was aspirated away by a respiratory therapist as requested. Once he seemed ‘stable,’ all medical personnel left the room to let us have our last few moments with Johnny. Myself, my brother, my mom (his ex-wife), and his brother and sister were there. I was on his left side, followed by my mom and Garrett. My aunt was across from me, and my uncle was at the foot of the bed on my dad’s right side. Though we’d all had our alone time with him earlier in the day to say goodbye, we still talked to him and told him how much we loved him.

I thought he would pass away pretty quickly, but I was mistaken. Seconds passed and turned into minutes. I can picture him laying there very clearly. He would go ten, twelve, five, nine, thirteen, twenty, eight, ten seconds between hitched breaths. I think I’ll be able to hear the sound of him breathing for as long as I live. After a certain point, I began wishing for him to die. I willed him to just let go and spare us the trauma of watching him die so slowly.

Twenty-five minutes later, at about 11:06pm, the night nurse came in to let us know that his heart had stopped beating.

Relief washed over me. For the first time during this whole ordeal, I started to cry. I thanked AJ and put my hands to my face while I ran down the hallway into the “consultation room” where I started to wail out in grief, sadness, and pain. I cried alone for a minute or two before my mom and brother caught up to me. We all hugged and sobbed together for a while. After about ten minutes, my tears started to let up. I knew I had to shift from hospital mode into funeral mode. My mom and dad were divorced in 2016, so as his oldest child, I took on most of the responsibilities after his death. When we had composed ourselves a little bit, we went back into the room to be with my dad’s body until the house supervisor came by. I remember asking AJ for a cloth to wipe the blood from my dad’s beard and neck where the central line had been. Because he was no longer alive, it was too easy to move his neck and head while I cleaned him off. It was disturbing.

Once the house supervisor came in, we began discussing the logistics of moving my dad’s body, funeral homes, indigent burials, and more. That’s a post for another time. After we decided to move him to the hospital morgue for the time being, my family collected my dad’s belongings and started the trip home. I had only slept for 3 of the last 50 hours - 2 hours that morning and a 45 minute nap in the middle of the day. To say I was physically and emotionally exhausted was an understatement. Garrett rode in the car with me. We stopped at a McDonald’s for our first food since lunch. I vaguely remember eating, changing into pajamas, putting on The Joy of Painting to soothe myself, and climbing into bed. One nightmare was over, but another one would begin after my night’s rest.

Thank you for reading this far. This has been extremely difficult and therapeutic to write. If you have anything to add or comment on, please feel free to submit a post or ask a question through the buttons above. 

Much love,