You never know where life is going to take you or what lessons it is going to teach you. Some lessons you can learn by studying and others you can only learn by experiencing.
In 2016 my father was diagnosed with COPD. I had moved back into the house to help him out a bit and to wait for the home I was planning on moving into to be remodeled. Over the next few months my plans drastically changed. My father became sick with a cold and rapidly progressed from Stage 1 COPD to stage 4. During this time, I was also struggling with the death of several friends, so my timeline of events gets a bit fuzzy.
The most vivid memory I have of that time was sitting in the ICU with my father’s doctor. He came in to tell me my father had 2–4 years left to live. The world felt as if it had both froze and was rapidly spinning all at the same time. My father and I had never had a perfect relationship and I had always hoped that we would one day reconcile some of our issues. Yet the gravity that our time was now limited became more and more apparent with every beep of the machine he was hooked up to. Deciding how my father was to be cared for during the end of his life was not my top priority during that time in my life. At that time, I was concerned about going to electric forest, graduating college, and finding myself, not which home I should place my father in.
He was in and out of the hospital for almost 4 months until I began to understand how to take care of him. The days before he was released, I spent all my free time cleaning his space and getting a room ready for him. From all the research I had done I had decided that placing him in a home was not an option for us. When he came home, I naively thought that this wasn’t so hard. He could still walk; he could still talk I just had to do basic chores for him. However, as my own life began to catch up with me this quickly began to drain me.
Fast forward to 2018 where I had 3 friends all die back-to-back. Now loosing a friend is nothing new to me. I chose to associate myself with drug addicts and other unsavory characters as a teen. You can only do opioids for so long before they take your life in one way or another. These deaths were different though. They taught me that some deaths hurt more then others. All friends are not created equal. My grief left me incapable of caring for myself, but I still had to take care of my father.
This made me begin to resent him. My dad wasn’t a bad dad so to say but he is an artist. Artists will almost always put their work first. I had turned down an opportunity to move to Texas, I had turned down a chance to travel Italy, and I had said no to numerous events I had wished to attend so I could take care of him. Then shortly after the pandemic started and I started to truly resent him.
The more time I spent with my father the more I realized he cared more about staying alive then allowing me to live. His condition also began to truly worsen. My grades started to slip, my work started to suffer, and my mental health began to degrade. He would have attacks late at night and I would stay up for hours every night to care for him. Sacrificing my own sleep and sanity to try and keep him alive.
At this point you might wonder why I haven’t asked anyone for help or found a service to help us. Well, this answer is simple and complex. I don’t have anyone to ask for help. My mother left when I was 16 and my sister is in her own world. My younger brother did help for a bit but then he relapsed and sadly had to cut him out of my life. Why did I not find a service to help? Well, our social security system is basically set up to fuck old people. Because we have an equity loan, we have an “asset” and because our asset is considered more than 60,000 by some bureaucrat sitting at their desk, we do not qualify for any assistance.
My father did have a pension and a retirement plan but the College he worked for fired him. We sued for ageism and won a settlement of, ironically, 60,000 which we have carefully budgeted out to be able to afford his groceries, meds, and pay off the equity loan bit by bit. My father has a vast collection of his artwork worth perhaps a million dollars, but nobody wants to buy a dying artist works, they want a dead artists work.
So here I am now, trying to live my own life, in the middle of a pandemic while also caring for a man who has unintentionally been stealing my life from me.
He has always been a bit of a negative and bitter person but now being around him so frequently it has become unbearable. I began to tune him out when he spoke. I began to avoid being around him because I simply no longer had the patience or energy left. Watching my friends live their lives while I felt trapped began to rip away at me. I have felt more alone than I ever have in my life over these past few years. I have tried different online group therapies for people caring for their parents. But this made me feel even more disconnected. The people in the groups were all in their 40s or older. The age that feels right to be planning your father’s death to me. Not 20.
COPD is a very slow death. There is no cure, the only treatment involves a copious number of overpriced inhalers and an expensive machine designed to only last a few years. It has made my father bitter, and it has made me bitter as well. It is strange to watch someone die slowly. First you start to see the signs, then the scent begins, and you know there isn’t much time left. The worst part is that you never know which breathing attack is the one. You just pray you wake up one day and he didn’t. I feel as if I am waiting for his life to end so that I may start mine. That feeling fills me with guilt and resentment for myself.
My feelings are mixed as I watch him die slowly. On the one hand I do not want him to suffer, I wish I could give him a better more comfortable life right now. On the other hand, I am so exhausted and have found myself ignoring his alarm upon occasions. Some days when he doesn’t ring for me, I am both afraid he is dead and hopeful that he might be dead. These emotions are terrifying, painful, guilt rigging and isolating at a time in history when we are more isolated then ever before.
I write this in the hope that it reaches the ears of someone else who feels completely alone. There are 7.4 some billion people on this planet. You are never truly alone in your experiences.
