My Reality and Death
“Don’t worry about coming back over today, but you better be here first thing in the morning.” That was the last thing my dad ever said to me.
My Best Friend
We were very close, my father and I, and we were just alike! So, yes, he was my preferred person to spend time with, but he was also the person who I argued with the most.
My dad was in end-stage renal failure and had to be put on dialysis. At that point, I had dedicated myself to doing anything and everything my dad needed me to do. He didn’t have a drivers license, so he relied on me every day, and I was more than willing to go and do things with my dad at any time. Having to do dialysis was not something that my dad was very keen on doing, he had a negative attitude from the beginning and he absolutely hated it. My main focus, my main job, was to keep my dad as happy as possible, so he would go to his dialysis sessions.
The dialysis schedule was every Monday, Wednesday, and Friday, from 8 AM until 12 PM. I would take my dad to and from his sessions when he was willing to go. Sometimes he would just drive himself and sometimes he would tell me that he was going to drive himself, but drive himself to a slot machine instead. Dialysis isn’t something that works well if you’re not consistent with it. A machine takes the job that your kidneys previously had, cleaning and filtering your blood to remove the toxins. If your blood isn’t being filtered, then your body is being poisoned, which leads to a quick death.
The Day Everything Changed
On August 8th, 2016, I woke up to a text from my dad stating “Call Davita (the dialysis center) and tell them I am not coming today. I don’t want to hear any bitching about it, just do it.” I didn’t argue too much with him about it because he had been so angry and depressed recently. My dad said he didn’t feel good and just wanted to be left alone. I went to his house, with my son, a little later to take him to pay a few bills. When we got back to my dad’s house, he played with my son for a few minutes and then I was ready to go home. My 2-year-old was starting to overwhelm me and my dad and I had been bickering all morning. I planned to go home for a while and then come back later to take my dad to the library. But, he got mad that I wanted to leave and said: “Don’t worry about coming back over today, but you better be here first thing in the morning.” I hugged him goodbye and he wouldn’t hug me back. I went home and didn’t give any of it much thought, this behavior wasn’t abnormal coming from my dad.
Later that afternoon, I received another text message from my dad that said: “Don’t make any plans for the next three days, you’ll be with me." What the hell is that supposed to mean? I had no idea, but he was starting to make my blood boil. I called his phone and my sister answered and told me that he was having a hard time breathing. My dad had told my sister that he should probably go to the hospital, but he didn’t want to. Once again, this was mostly normal behavior of my dad, and I kind of shrugged it off.
About an hour later, I received a text from my sister that said: “I called an ambulance.” That text stopped me in my tracks, my dad wasn’t a doctor kind of guy, we never called an ambulance for him, no matter what. Before I could even think about responding, the police radio scanner went off and I heard “[My parent’s full address], 57-year-old male not breathing, he is full code.” I grabbed my kid and drove my minivan over 100 miles per hour, for 5 miles, to get to my dad.
I could not see my dad when my son and I arrived, he was in the back of an ambulance. The medics were able to get his heart going again, but I didn’t have a good feeling and things didn’t seem to be looking good. I was completely panicked and couldn’t think clearly. I felt like I was watching all of this from above, I didn’t hear any sounds and there was nothing but chaos around me. Thirty minutes later, I was entering the hospital room to finally see my dad. As soon as I walked in, I knew right away that there wasn’t any hope for him. There were 2 doctors and 4 nurses all doing different things and everyone seemed so panicked. My dad was hooked up to a ventilator and an IV and his body was red. He was having severe involuntary tremoring and his blood pressure was 280/175. I went up to his face and seen my worst fear, his fixated pupils. I took out my phone, turned on the flashlight, and shined it in both of his eyes. Nothing happened, my dad was completely unresponsive to anything at all and was only “alive” because of the machines.
Letting Him Go
To me, my dad was gone, and I knew that immediately. My life crashed and everything changed at that very moment. My dad was brain dead, his brain had went without oxygen for too long before the medics were able to get his heart beating again. I didn’t need any doctor to tell me that, I didn’t need to be tortured and go through hell the next three days to know that. But due to certain laws and regulations, my dad couldn’t be pronounced brain dead until after several tests were run and several doctors gave the diagnosis. I thought that all of those “rules” were complete bullshit. I wanted to unplug the machines right then. It was the worse thing I have ever seen in my life, my dad, dead on those machines. The pain and the fear it caused, it was so unnatural and I hate everything about life support. Seeing machines force a human body to barely function is the most traumatic thing I have ever witnessed. It is so awful and I don’t understand how life support can be legal or be considered humane.
I confirmed with the doctors that my dad was unresponsive and that he didn’t have any primitive reflexes. My dad collapsed due to his heart failing. His heart stopped because the potassium level in his blood was extremely high. The potassium level was high from not going to dialysis. My sister and a couple of friends thought there was still hope and that my dad would “come out of it” soon. That made me so angry, how could anyone be so ignorant and think that maybe everything will be alright? My sister said I was being an asshole and I told her she was being hopeful in the wrong situation. I hated everybody at that moment and I could barely wrap my mind around what was going on. I sent my son to go stay with his dad for a few weeks and I went home and let my feelings explode out of my body.
My dad's brain scans and tests never did change. There wasn’t any improvement and there wasn’t going to be. I just kept sitting and staring at my dad’s lifeless body being controlled by machines. My mom signed paperwork at the hospital so that I could make all of the decisions, she didn’t want anything to do with it. I talked with the doctor and he wanted to do one last test before diagnosing brain death. The test was scheduled for August 11th, 2016 at 7:00 AM. It was requested that all the family be there. This last test was going to be very simple, turn the ventilator off and allow the carbon dioxide to build up in my dad's body. If there was any hope for my dad, his primitive reflex would be to take a breath. If his body didn’t do that, then yes, he is brain dead, no doubt about it. I already knew how that test was going to turn out, my dad was gone and had been gone. I was so sick of seeing his body on those machines, so sick of people having false hope. It hurt so bad, all of it.
I hadn’t slept for 2 and a half days and I hadn’t eaten much either. I didn’t really know up from down at this point. I couldn’t take it anymore, I just wanted it to be a terrible dream. On August 11th, around 1:00 AM, I decided to try and get a couple of hours of sleep before going back to the hospital for my dad’s last test. I fell asleep and at 1:45 AM I was woken up by my phone. It was the hospital. My dad's body was now starting to shut down, even with the horrible life support machines, and he had coded 2 times. I told them that I would be there immediately but if he coded again to let him be, he was already gone. He was marked DNR — Do Not Resuscitate and I went to the hospital.
When I got to my dad's room, all of the nurses were standing in his room, surrounding his bed. My dads failing body was raised up a bit and he was starting to yellow. He looked terrible. My heart shattered completely at that point. I asked the nurses why they were all in there like that and one of them said: “We didn’t want him to die alone, in case you didn’t make it here on time.” I instantly started crying. That was so very kind of those nurses, I was so glad that someone would have actually been there, and cared too. But my dad had been gone, and it was just his body that needed to be let go. His vitals were very low, blood pressure was 15/8 and his heart was beating 9 beats per minute and steadily going down. It was so awful, I couldn’t feel anything but intense pain, and I was so angry. I screamed at the kind nurses to shut the machines off, to let his body go already, to stop this damn torture. They didn’t ask any questions or say anything, they did what I demanded and let my father go. He was pronounced dead at 2:24 AM on August 11th, 2016.
My father's death is so hard for me because I revolved my life around him. He wasn’t only my dad, he was also my best friend, my support, my counselor, my teacher, my biggest critic, my dad was my everything. My life consisted of waking up, looking forward to his texts or calls, and tending to his wants and needs. That is what I agreed to do, that is what I wanted to do. His absence has left me in the twilight zone. What the hell am I supposed to do now? All of the reasons I lived my life the way I did were now gone. The only person that could give me advice would be my dad, but my dad is why I am having these troubles. It feels so wrong and so fake not having my dad here. I was only 22 when he unexpectedly died. I still needed my father then, like I still need him now. Nothing about the situation makes any sense to me and none of it will ever feel fair. My dad's last text of “Don’t make any plans for the next three days, you’ll be with me.” makes my head spin out of control. Why did he know that he was going to die and that it would be a three-day process? Because it was, August 8th to August 11th. Why did he know that? Why did he let that happen? Why didn’t he just go to the damn dialysis sessions? Why did he abandon me? Why didn’t he just give me a hug goodbye that day? There are so many unanswered questions that I have for my dad, there is so much I want to say, so much I need to hear. I am stuck forever with not knowing the full story, not having the answers I want. I didn’t want my dad to die ever, especially with us being on somewhat bad terms. That is a hard thing to live with. Every day I wonder if my dad was disappointed with who I became, I wonder if he even cared. I do know that my dad loved me, but that doesn’t make all of these feelings go away.
Three years have gone by now and what I have learned is that time does not change or fix anything. I heard so many people say “Don’t worry, it won’t always hurt this bad” or “As time goes on, it will be easier to deal with”. No matter how it’s said, it is not true. Time does not heal anything, time does not fix anything. For me, the only thing time has done is make me sad. The more time that goes by, the more I miss my dad. Each day that passes is another day that I do not have my dad in my life. That hurts. It hurts in so many different ways and it is so hard to explain. I do not look forward to anything significant in life because I won’t be able to share it with my dad. My dad is missing out on seeing his grandson grow and learn. My son doesn’t have too many memories of my dad, and the ones that he may have are fading every day. I will never understand why this had to happen and I will always be angry. Yes, I am angry at my father, who is dead. It may sound crazy, but he gave up, which hurts, and I feel like he gave up on me. I still cry, even three years later. I still get random urges to call my dad, I still struggle with day to day life. No, I did not get “used to” my dad being gone, but I am almost used to being in a constant state of “why” and used to being sad. I will never learn how to live without my dad. I am still learning how to live and deal with the constant pain that comes with his absence.
It's Different for Everyone
So, what is the point of reading this? Or what is the point of me writing all of this? Well, I am not sure, to be honest. Maybe there isn’t any point behind it. Turning some of my thoughts into readable words is a bit intimidating, but it does make me feel somewhat better. It helps to lighten the weight on my shoulders and it helps my mental health. I can't offer much advice for anyone going through a similar situation, but maybe knowing how this destroyed me will help someone else feel less alone. The thing is, nobody can go up to someone and say “I know how you feel, I’ve been through this as well.” Several people told me how they have lost so many people and how they've made it through just fine. Good for them, I am glad those people are fine. But they do not know how I feel, they do not understand my pain. Every person is different and every relationship is different. So every scenario of loss is different and cannot be compared to other losses or other peoples losses. Losing my dad is something only I can feel and understand. It is different for my sister, for my mom, or for anyone that lost my dad. All I know is that losing him has been the worst thing that's happened to me, to date. Growing up, we aren’t taught how to deal with death when it occurs. My parents taught me a lot of valuable lessons, they molded me into who I am. But what they did not teach me was how to keep living after they pass on. My dad never once offered me any advice or words of wisdom on the subject of him being gone.
If I had to give anyone advice or my opinion on dealing with losing a parent, I would say this:
- Do not take your parents for granted, spend as much time with them as you possibly can.
- Never part ways on negative terms, always tell them you love them before leaving.
- When a parent does pass, do not suppress the grief, do not try to avoid the feelings. The feelings will rise to the surface eventually, and the longer it’s put off, the worse it will be when it does happen.
- Do what you have to do to get through the day. Don’t listen to what others say, just try to make it through one day at a time, regardless of how you do it.
- Remember that it’s ok to not be ok. It’s ok to have those feelings, it’s ok to break down, it’s ok if your life falls apart. It’s ok to be sad and it’s ok to miss the person that is gone.
One Day at a Time
What I do is try to keep my mind interested or busy with other things. I try to find things in life that are unfamiliar to me and learn about them. For example, I have two pet tree frogs. One originates from Australia and the other originates from the Amazon Rain Forest. I absolutely love the frogs and they are my best friends, part of my family. I have learned so much about them both and I witness new things every day. Something else I have directed my love and attention to is growing houseplants. I enjoy all of nature, but I'm particularly obsessed with tropical plants. It gives me a sense of peace to see the plants grow and turn into something so large and beautiful. Being surrounded by my plants somehow helps with the depression, and my frogs help too. I enjoy nature so much because it’s calm and it’s alive. It’s almost as if I can feel my dad's presence through nature, and I welcome that feeling.
I will always yearn for my dad to be here and I will always wonder ‘why?’. The pain will never subside, but I am learning to accept the pain and learning to stay distracted. Sometimes the point of life becomes unclear to me, but I will keep on taking one day at a time until my time is up.
I love you Dad and miss you very much.
Questions & Answers
© 2019 Sarah Lyell