I have been here before, that’s why I am not OK

“Have you ever watched a parent die?”

“I mean really watch them die? Have you ever sat and watched as their health deteriorated from day to day or hour to hour, even minute to minute?”

That’s how I feel like responding when someone asks how I am doing or if I am ok. Instead, I will tell everyone that “I am hanging in there” or that “I am doing the best I can.”

In all reality, I am NOT ok. I am NOT “hanging in there.”

I am a mental and psychological mess.

You see, I did watch a parent die. And it was a lot like what I have watched over the past two weeks.

I watched as my mom was given the diagnosis of cirrhosis that would eventually lead to her death.  Over the next few years, I was there for the doctor’s appointments, I was there on the days where she barely had enough energy to get out of bed but fought the fatigue to get up and go to work. I watched over her at home and then at her hospital bed when the illness became so much that she just couldn’t overcome it.

I held my mom’s hand as she drew her last breaths.

That’s why I was not ok as the doctors told me that my dad was showing signs of cirrhosis. That’s why I wasn’t ok when they would talk about the disease and the symptoms and what it could do to the body. I wasn’t ok because I already knew the answers.

And I was not ok as I watched my dad go through multiple surgeries last week in which they removed about 45% of his lower bowel. When the surgeon gave me the word that he would realistically give my dad a 10% chance to survive the procedures, I held my wife and the only words I could utter were “FUCK. I can’t lose him. Not now. Not this time of year.”

What was so devastating about the time of year?

Mom passed away in February of 2011. But the hospital stay that saw her health start rapidly declining was right after Christmas of 2010. It took me 5 years to finally put up a Christmas tree or really get into the Christmas spirit. That was last year.

And now this. Around Christmas. And I was being told there was a 90% chance I was going to see the holiday without my dad being around.

He came out of the surgeries and has shown a remarkable amount of resiliency, according to his surgeon. But the surgeries aren’t the only issue he is facing. He is still looking at a long road ahead because of the issues with his liver, which along with the cirrhosis, include a large mass that they need to be able to look at.

In the meantime, dad has been dealing with some mental fogginess or confusion. It’s a typical sign in patients with liver disease, as I remember with my mom. Some will remember the story I once told of my mom telling me that she made sure the hospital televisions had Lifetime so that I could watch sports.

Well, dad has been coming up with some stories of his own.

When I asked him what he was doing as he was pulling his covers off, he told me he was getting ready to go into the store. When he was babbling, he told me he was talking to me on the phone (there was no phone in sight). When he put his hand to his mouth, he told me he was drinking his Pepsi (he hasn’t been allowed to have anything to drink in almost two weeks).

While some of those are funny, or seem funny on the surface, they hurt down deep. They tear me up inside because I have seen this behavior before. I have seen as the effects of the cirrhosis and the failing of the liver mess with someone’s mind, be it for a short amount of time or over a prolonged period.

And that’s part of why I am not ok.

There’s another thing that is killing me inside. It’s the shred of self-doubt over whether I have made the right decisions or not. While there is becoming more of a chance that dad will eventually leave the hospital than originally thought, the question still remains how healthy he will be and if he will be able to lead any semblance of a normal life. We won’t have any of these answers for a while, probably.

But the question that still lingers in my mind was if I made the right call to allow for all of the procedures and to put him through the pain that he is currently having and any difficulties that might come. In the end, was it worth it?

I really don’t know. And neither do the doctors.

When mom passed away and I made the decision to take her off the ventilator, it was becoming more and more clear that she would never be able to live without the help of the machines. That’s not what she would have wanted.  And now with dad, the decision was much more difficult because of the uncertainty of how he would respond to the surgery and just how bad his liver really is, a question that can’t be answered until his bowel was healthy enough to proceed. I have had the internal battle of “what’s best for him” vs. “what we all hope happens” more times than Tom Brady battled Peyton Manning.

And as I sit here in his hospital room day after day after day watching as he seemingly isn’t making much progress, the questions eat at me more and more.

Did I do the right thing? Will dad ever be back to himself? Did I do him an injustice by letting him suffer? Was I selfish in my decisions because I couldn’t face losing him?

The problem is that there is a chance I may never know the answers to all, if any, of these questions.

But it’s ok, because I am hanging in there.

 

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