CAREGIVER CORNER- ANTHONY

Your twenties are a confusing time.

It is a time where you have to figure everything out about yourself. Where you want to live, what you want out of your career, relationships, life. For someone that went to college, it’s truly the first time in your life where it is 100% on you for everything. Your twenties are preparing for life, which has no blueprint, no right answer.

Something you can never prepare for in life, no matter the age, is a terminal diagnosis for a loved one.

I believe the first few years out of school are the best time in your life. You finally have some money in your pocket and the stakes in your career, relationships, and life are relatively low. Stuck somewhere between being a kid and being an adult.

Being told your father has at most 3–5 years to live changes the stakes of your life as quickly as the doctor can say those words. How do you come to grips with that? How can you process hearing that about your dad? I went through it and I still don’t have a good answer for it.

Frankly, I don’t think you can ever fully process it. It just becomes something that’s a part of you and something that you learn to live with through time. It’s all very confusing and scary and unknown, much like the rest of your life feels like as you get older.

Through all of this confusion is a need to find balance in life.

Life cannot be a never-ending party, but you cannot miss out on all the fun and beauty the world has out there. Balancing all of this while your dad has ALS is hard and comes with a lot of guilt. Weirdly going out and having fun while your loved one battles a horrible disease feels wrong. On the other side of it, you know your dad would hate you sitting at home being sad all the time.

In many ways, your life gets put on hold when you hear a diagnosis like that, and it’s hard to remember that your life still needs to go on. It is difficult for life to go on when your heart sinks every time your phone rings. There is a constant sense of dread going through something like this, but you cannot run away from it or let it consume you. That’s a difficult balance to find and something that’s fluid on a day-to-day basis.

Part of ALS that makes this so difficult is the speed at which things advance. Working full time and continuing through life means you cannot be there 100% of the time. At a minimum, I spent one night a week with my parents to help where I could and to spend much-needed quality time just hanging out.

This became more difficult as everything progressed. It is incredibly scary how much can change in a week. Sometimes a week was all the difference in the world in his ability to move, speak, eat or even breathe. Not knowing which dad you were walking into every time you visited added to the constant sense of dread and anxiety.

It was scary walking through that door every time I visited, but I wouldn’t trade those memories or the time I spent with my parents for everything.

Much like in life, there’s no right answer when going through something like this. In the two and a half years he has been gone it’s gotten easier coming to terms with everything.

All you can do in life is do the best you can with the situations you are given. Two truths in life are that it is equally random and unfair.

Why did this happen to me? Why did this happen to my family?

Those two unanswerable questions are something that has bothered me since his diagnosis.

If this has taught me anything, it’s that you can only control what you can control and not let unanswerable questions consume you.

CAREGIVER CORNER- ANTHONY was originally published in I-Ally on Medium, where people are continuing the conversation by highlighting and responding to this story.