*Trigger warning - death, hospitals, IVs*
If you are new here, I graduated from college in May of this year and, in order to do that, I had to complete a senior Capstone project. My Capstone thesis was about how grief in young adults between the ages of eighteen and thirty years old presents itself differently than in other age groups. It also discussed the expectations that people outside of this age group have for those young adults that are suffering from grief. Those expectations have stemmed from the fact that, between the ages of eighteen and thirty, many people aren't considered to be old enough to have experienced grief, but they are also seen as not being old enough to understand how grief works (or doesn't).
I could talk about this all day...
Now, this wasn't a topic that just appeared out of curiosity. This topic, unfortunately, is one that came from personal experience. Buckle in, because this is the story behind my Capstone.
(My dad and I, 2002. I think.)
This is my dad. His name is Paul Stefanik. He was a drummer, a geologist, and a blacksmith, among so many other things. He loved football, hated anything banana flavored, and could recite almost every line from almost every episode of Psych. He is the best father I could have ever had the chance of being a daughter of.
In February of 2018, my dad was traveling for work around Port Jervis, NY, but he was staying in a hotel over in Pennsylvania. It was really cold and it was snowing in the area he was in. He went out to grab something from his car in the parking lot of the hotel and he slipped on a batch of black ice. He ended up landing on his back, but he also hit the back of his head twice off of the pavement.
He called the ambulance and called my mom who was in Cincinnati (we were still living there at the time). I was in New York on campus for my second semester of my freshman year of college, so my mom calls me to tell me what happened. The ER doctors ended up sending him back to his hotel room with a diagnosis of a concussion. Little did we know at the time that this head injury would start a chain of events that did not match up with "just a concussion".
My dad comes home to my mom in Cincinnati from PA, and she notices that a part of his arm starts twitching. She points it out to him and he says that he hadn't noticed it before, but it doesn't seem to be bothering him. So, they left it alone. Jump ahead to April of 2018, and my parents made a quick decision to move back to New York to be closer to our family and to be closer to me. Now, my dad was always a really organized person. He was really good at cleaning and making everything fit together nice and neat. But, when my parents were packing to move, the boxes he packed were disasters. Some boxes were only half full, some boxes had broken items in them, and some boxes had no correlation as to what items were from where.
A few months later, around July and August of 2018, he had started a new job in the area we were staying with my aunt and uncle. This job required him to do a lot of math like his other jobs normally had him do. He came to my mom and said that he doesn't know how to do calculus anymore (Context: he had Bachelor of Science degree in Geology. He knew calculus like the back of his hand). Around this same time period, he had started slurring his words, he had huge personality changes, and he was losing his abilities to use everyday items like his cell phone, a computer, and how to drive a car. Around Christmas of that year, he had stopped talking almost completely.
A few months go by, we're now in May of 2019. My dad has stopped talking, he has stopped using his cell phone, he doesn't drive, he can't write, and he started having painful muscle spasms all throughout his body. My mom got laid off from her job in February, so she became my dad's full time caregiver. Doctor's appointments after therapist appointments after physical therapy appointments have gone by with no results and no diagnosis of what is causing his very rapid decline in his health. On May 24th, 2019, my mom takes my dad to a neurologist in Suffern, NY. My dad goes through the appointment and walks out with the one thing that no other doctor has been able to give him: a diagnosis. This doctor gives him the diagnosis of frontotemporal dementia with amyotrophic lateral sclerosis, or FTD-ALS (Some of you may know ALS to also be known as Lou-Gehrig's disease).
(My dad, June 3rd, 2019)
Let me break that down for you: frontotemporal dementia is the atrophy (or decay) of, or portions of, the frontal lobe of the brain. It causes extreme changes in behavior, changes in personality, and loss of speech. Amyotrophic lateral sclerosis is nervous system disease that affects the cells in the brain and the spinal cord causing loss of muscle control. Most cases of ALS come about from unknown reasons and only a third of all FTD are inherited. The neurologist said that what most likely happened is that when my dad fell and hit his head, the ricochet from the hit to the ground caused damage to his frontal lobe and the hit to the ground itself caused damage to the nerves and the brain cells in that area.
Something else the doctor told us was something that we did not want to hear, but it was something we had been suspecting for a little while: my dad was dying and that he probably would not survive to see Christmas of that year.
During this time, I had just finished my sophomore year and had started an internship for the summer. This was the hardest summer I had ever experienced. I was traveling back and forth between Albany (where my parents lived) and Syracuse (where my internship was). Every week I came home from Syracuse, my dad had lost another ability. Seeing him lose each of these abilities reminded me of when this pain would end for him and things were moving way quicker than what had been predicted. Towards the end of July, my dad had been accepted into a hospice care program to get extra help with his needs, like having a nurse come and see him every so often. However, because he was much younger than the usual hospice patient, it was hard to get people to understand that he needed hospice.
We're now in August of 2019. I turned twenty years old on the 5th, I finished my internship on the 15th, and I had moved back onto campus on the 20th. I had considered not going back for the fall semester. In the end, for a few reasons, my mom and I agreed that I should go back. So, I moved back onto campus early to be a part of my college's orientation team to help that year's freshman move in. The week went by, and my classes started on the 27th. My attention for my classes was very little and I had told all of my professors that I needed my phone out during class to get updates on my dad. Some of them didn't understand, but I didn't have the energy to put them in my shoes at the moment.
On August 29th, my mom called me. My dad had been placed into hospice care in Albany Med. He went from being predicted to not make it to Christmas to being predicted to not making it through the weekend. The next day, I packed my bags for who knows how many days and was driven back home to say goodbye to Dad. I was dropped off at Albany Med's hospice unit and saw my dad in a way I've never wanted to see anyone.
He was in a very dimly lit hospital room, in a bed, wearing a hospital gown, hooked up to a morphine drip, and gasping for air. My mom was there along with a few other family members. He was asleep, so he didn't know I was there. I don't know if he knew anyone was there. I'd be lying to you if I said I remembered that day very vividly, but I don't. I don't remember a lot of what was said or done, I just remember seeing my dad on what would turn out to be his last full day alive.
The following day, my mom and my grandmother went to the hospital around 8:30AM and I went around 10:30AM. I got there and spent the next few hours sitting with my dad, watched him fight against the tubes attached to him, and held his hand while he fought to breathe. I couldn't take it for very long, so I sat outside in the waiting room with a therapy dog for about two hours (Thank you Pepper Jack the puppy). I went back to my dad's room and the rest of my time at the hospital was mostly I blur. I remember kissing my dad's cheek goodbye and telling him I would see him tomorrow. I drove home around 5:00PM and I drove to the local cemetery and sat down next to my grandfather's grave.
Now, I'm not a religious or super spiritual person. If you are, that's great. But for me, it's not my thing. But that day, I sat in the cemetery next to my grandfather's headstone and just screamed to the sky. I screamed about how I didn't want my dad to be in pain anymore, how I wanted him to sleep, how I wanted him to not suffer anymore. How I would do anything to make this nightmare end...
(My grandfather's headstone, August 31st, 2019, 5:24PM)
I don't know how long I was there, but after I had exhausted myself of screaming and my cries had fallen onto the deaf ears of the dead, I drove home. My mom and my grandmother came home around 8:30PM. None of us wanted to cook, so we threw in a frozen pizza and just sat in the living room. I don't remember what we watched on TV and I don't remember what we talked about. Or if we talked.
About an hour later, my mom's phone rang. She went into the other room to answer it and she let out an agonizing sob. At 9:30PM on then night of August 31st, 2019, my dad died at the age of forty nine...
(My dad, May 25th, 2019)
The story continues in part 2...
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