I remember so vividly my college graduation. I painted my mortarboard with the words “What’s Next?” to honor my writing idol, Aaron Sorkin, and to challenge my future to “come at me”. I remember walking across the stage, daring the tiny woman with the microphone to butcher my very Italian last name. I was handed a rolled up piece of paper by the President of the University. It turned out to be a letter of congratulations and a desperate plea for money from the Alumni Society and not an actual diploma. But, still, I had conquered a lot of things while I was in college and felt I was ready to go out in the world and start a revolution. Armed only with my pen and my brain, I would inspire my generation to fight back against tyrannous government and societal standards. I was going to write plays that would move people; plays that would make them think and wake them up. I was going to fall in and out of love with people and ideas. I was going to travel and explore the entire planet. I was going to spend my twenties not unlike my favorite writers and literary characters: screwing up and then growing. I was going to be talked about for centuries to come.
Here’s the thing: we are not all Karl Marx and Abby Hoffman. We don’t all cause social change. We don’t all have the sexually explicit, drug laden, misspent youth of our idols. We’re not all lucky enough to be twenty six, writing in a tiny hotel room overlooking the Seine. Some of us have to grow the hell up, and we have to do it fast.
After bashing around a small city on the Rust Belt for a year, I had written one play and produced it with some friends for an independent, gorilla-style art festival. I began to reevaluate my ideals and goals and started to think this was not the place for me. During this time, I knew then that my Mom was sick. She had been diagnosed with Early Onset Alzheimer’s a few years earlier. I knew that my Dad was quickly approaching the point of being overwhelmed, so I ungracefully (and loudly) martyred myself to help them out. I returned to the suburbs of New York City, quickly took a part time job, met a guy and fell in love. I figured things with my Mom would level off, I’d get a better job, save up some cash and then I’d move out. Thus would begin the great life of The Writer, living in sin with her lover and creating art that would define a generation.
This is the point in the story where I, the dreamer, receive a swift kick in the teeth from reality.
My imagination is a wild, powerful machine. It can take me places so far from where my body actually is. It can run off with me and it will be hours before I realize I’ve completely missed whatever was happening around me. In all of this vivid imagery, some beautiful and some horrific, I have never dreamed of a scenario quite like the one I am living in now.
I am now the parent, dispensing medications, driving Mom to doctor’s appointments, and reminding her to eat. The stresses of managing someone else’s life was only increased tenfold when I was diagnosed with Papillary Thyroid Cancer. It was referred to as “the good kind of cancer” (which is an entirely other conversation) and I was swiftly ushered through a serious of tests before being scheduled for a complete thyroidectomy. Through all of this, I ought to have been trying to keep myself calm and dealing with the very real horror of facing my own mortality. Instead, I was easing the concerns of a confused woman who looked like my mother, but who could offer me no motherly comfort. After my surgery, I got back on my feet as hastily as possible to continue giving my Mom the care she needed. I was fortunately given a clean bill of health one month later, the only remnants of my ordeal being a daily pill and a scar at my throat.
Since then, the decline in my mother’s condition has been rapid. We are now faced with the real possibility that my father and I are in a situation that we are not qualified to deal with. Not only do we not have the medical training that those professional caregivers are afforded, but even a long history of dementia throughout our family could not prepare us for the emotional stress of daily life caring for my Mom. She now has aggressive episodes where she does not recognize us and acts out in wild fits of rage and, heartbreakingly, total fear. We had just begun a regimen of antipsychotics to hopefully quell these episodes when, after my Dad left to visit a friend, I experienced one of these violent episodes with no one around to back me up. Fortunately, my Dad was able to return quickly to step in and try and calm my mother down, but in the interim, I found myself in a unique situation.
With nothing on me but my pajamas and my thyroid cancer scar, in the living room of my childhood home, my mother hurled a ceramic jar at me. As it crashed to the floor several feet from her intended target, she scrambled to retrieve a shard and, screaming that I was a demon, yelled that she would kill me. In that moment, my instincts took over, and as I made for the door of our home, my only thought was “RUN”.
Once there was a wall separating myself from any sharp projectiles, a lot of thoughts ran through my head:
1. That was close.
2. I hope she doesn’t hurt herself. (This is when I cracked the door to keep an eye on her. She was screaming at no one and yelling nonsense like she was a politician on a soapbox.)
3. This cannot possibly be happening.
4. Maybe I should call the cops.
5. There is definitely no God.
I am sure that naïve, idealistic, post-grad is still somewhere down deep inside me. I’m also sure she still has big dreams for herself. But after that morning, the old version of myself is buried now under self-preservation and a new normal. I find that my constituents are now people twice my age who are caring for elderly parents with Alzheimer’s, instead of carefree twenty-somethings. I reach out to these fellow caregivers via the internet and find solace mostly in message boards where people express how fucked up this disease is, how unfair it is and how pissed we all are at the world. I am finding it nearly impossible to sympathize with peers of my own age. I cannot enjoy a friend’s retelling of her month long trip through Europe. I attempt to distract myself by inquiring about another friend’s wedding plans, but grow jealous and resentful at the thought of how far off any romantic future of my own is. I even grow frustrated with my therapist, who is really very kind and intelligent. As I sit in her office, I hear myself talking about my home life, answering her questions, and wishing I had anything else to talk about. I know that one day my role as caregiver will be relinquished to a professional and on that day I will feel as though I am betraying my mother. After that moment, I will be constantly reminding myself that it is best for her, that she is safer with someone else. But until that moment, I will walk around like Bruce Banner keeping a dark secret: I am always angry.
Those of us who bear the burden of caregiving all share one truth: “we are all in the same boat, and the damn thing leaks.” But while we are trying to bail ourselves and our families out, we know there is a second part to that sentence: the ship will eventually go down and our new burden will be that we made it to shore alone.