Having A Terminally Ill Parent

When I was little, Dad would look up at the sky on summer nights and would tell me, pink sky at night sailor’s delight, pink sky in morning sailors take warning. I remember having a diary when I was younger and writing it in the cover, and for whatever reason, I remember thinking that I wanted to have it written down in case he wasn’t around someday to remind me how the saying went. This is my pink sky in morning story.

They say that worrying is a waste, that most of the stuff we worry about will never happen, and for me most of the stuff I worried about never did happen, instead it was the stuff I never even knew to worry about. The way it turned out for me, is that the stuff I’ve spent my whole life worrying about is nothing in comparison to what the universe has actually dealt me.

In my life there will be two parts and two parts only, the time before my father died and the time after. I am well aware of the fact that I currently live in between those two moments, and people keep asking me “how are you?” And I know, they’re trying to be nice, but having a terminally ill parent is devastating. People talk about the moments that changed their lives forever, and for me, I know what I will talk about one day as the tragic thing that forever changed who I am as a person, my father dying. I look at people and I wonder what their tragedy was. Every day I know I can’t go back to who I was yesterday, because every day that passes I am one day closer to the day I lose him.

Regardless of the fact that this is the hardest thing I have ever dealt with and presumably the hardest thing I will ever deal with, we do find moments of happiness, and I wanted to share with all of you, what is wrong with my Dad (I call him Jim), and also what I’m doing to survive. This is not the first time I’m writing about my Dad being sick, if you want to read more I’ve also posted these; The Worst DayMauvais RêveNeon LightsMagicLincoln, Perspective.

What’s wrong with him?

My Dad was diagnosed in December with ALS (commonly referred to as Lou Gehrig’s Disease). ALS is an extremely rare and incurable motor neuron disease, which weakens and eventually ceases all muscle function. There is no treatment for ALS, and generally patients have a 20% chance of living more than two years after their diagnosis. Dishearteningly, most people do not know what ALS is. The Ice Bucket Challenge, which was popular on social media last year, did raise awareness of this neuromuscular disease, but most people do not know that it is fatal and that there is no known cause or cure. Unfortunately, when I tell people what is wrong with my Dad, they urge me to tell him to feel better soon. My father will never get better.

How is Life Different?

In January, my father had a feeding tube put in and he no longer eats solid foods, or drinks liquid. He gets all of the nutrition he needs through a tube. He uses a breathing machine every night, and needs help with things like standing and walking, although every day is a bit different. They say that people with ALS hit plateaus. They will have a period where there aren’t significant changes day to day, but then decline rapidly. Thankfully, at the moment we seem to be at a plateau. The biggest thing that seems different on an every day basis, is how much less he can do, and how much more I need to do. Since becoming sick, my Dad has lost a lot of muscle function, his speech is also slurred, and he has a difficult time coughing and swallowing, as all of these functions rely on muscles.

How am I?

I have my moments. I am completely heartbroken. I sometimes think about my wedding day and instantly am crying, as I picture myself walking down the aisle alone, as I picture some choked up groomsmen mentioning the fact that one important person is missing from this big special day in a toast. Other times, I can live, I can manage. My father raised me my whole life to be strong and proud, and I more than ever, need to be that for him and for my Mom. Sometimes, I feel guilty, I feel guilty to spend so much time being so sad. I apologize to Darren, I tell him that I’m not the same person, and I ask him if it’s burdensome to be with me, he assures me that it is not.

There’s this scene in the movie Jackie, the one about Jackie Kennedy’s life the days immediately following the death of her husband, and there’s this moment where she tells her priest that she doesn’t believe in God anymore, not if he can take away so much from one person, she says that she just can’t believe that this is all life has to offer her, and her priest tells her that that’s the beautiful and confusing thing about life, that everyone wonders if this is enough, and every day we look at ourselves in the mirror for a minute and feel a sense of emptiness, we wonder if there’s more out there, but then we make a pot of coffee and continue on. Most days I make a pot of coffee, and I go to work, and I come home, and life is in a lot of ways the same as it was, but then, all at the same time it is completely different.

One thing that I did not expect, is that you run out of tears for the big stuff, you cry for days, for weeks, for months, and one day it feels like you’ve completely run dry, until some tiny little thing doesn’t go as planned. I have cried over banana pudding. I have cried because a prescription wasn’t ready, even thought the pharmacy called my house and said it was; I have cried about the smallest things, because really, I’m upset about one really big tragic thing; I think it is totally normal to feel defeated by life’s everyday inconveniences; it’s bad enough that life has dealt this hardship, but then when all he wants in the world to eat is banana pudding and the grocery store is suddenly sold out, everything feels impossible.

Why Have I Chosen to Write About My Dad?

I think, for me, it’s a very new thing to feel unsocial at times, or to have my eyes well with tears suddenly when I see a father and daughter together in a store. It’s a completely new part of my life to think so heavily about the future and to cope with the inevitable loss of my father at the same time. I often times sit in a room full of people and all I can think about is if they notice that I am forever changed, can they tell that I can’t focus in on what they’re talking about, or react in a timely manner because I am always somewhere else? I think that everyone is fighting a battle, and everyone is doing the best they can with what they’ve got, and sometimes people tell me that I seem like someone who has it all together, so for me, to share this with people lets them know that I am a real human being with difficulties and struggles, it takes the pressure off of my parents to constantly comfort me emotionally, as I can type out a lot of everyday frustrations or emotions, and it gives me hope that someone who is fighting their own battle maybe feels a little bit less lonely.

How I’m Choosing Happy…

I can’t help but me eternally grateful for the 25 years I have had the pleasure of spending with my father. I have had a truly blessed childhood, and have had the honor of growing up in a country farmhouse with a big yard, a dog, and so much love. I was raised by a mother, beautiful inside and out, and a father who served his country, served students, and his family. I am thankful to have spent summers on boats, and winters cozied up by Christmas trees. Life is harder than it has ever been at the moment, but I want, more than anything to create more happy memories to carry with me for the rest of my life. I am choosing to live every day, as though it is our last memory together. We cozy up at night and watch movies, we eat take out, we tell each other we love each other, and we laugh. I have bad days, I do, but on days that I feel really sad, I choose happy. Sometimes, that means going to the gym and running on the treadmill and muttering my frustrations under my breath with every step, until somehow they seem a little less daunting. Sometimes, it means writing some frivolous blog post about makeup or clothes to distract me. Sometimes, that means sitting outside and appreciating the fact that the world is a beautiful place, despite everything. Sometimes, it means having a cry, a big hysterical cry, and letting myself feel absolutely miserable for about twenty minutes, but only allowing myself to feel that way for twenty minutes, and not all day. I let myself cry everyday if I have to, but never all day. Most of all, I’m trying to make days happy for him. He is the strongest man I’ve ever known, and to watch him weaken physically is devastating for him, and for us too, but our bond as a family is stronger than it has ever been and that is something to be grateful for.


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