Night sweats suck. Many nights since my father passed a couple months ago, I’ve awoken with them. Sopping wet. Itchy. Disoriented.
The nightmare is always the same. My dad calls from the hospital and tells me he’s about to come home. He says he didn’t actually die.
I should be happy, but he tells me that he’ll require full time care and will need my help like before. Help changing his diapers, feeding him, giving him showers, cleaning up after him, emptying his catheter, doing his dishes, changing the dressing on his bed sores. I lay awake wondering if it’s actually happening and fall back to sleep before resolving it.
My dad lived in our basement apartment for two months before he passed. He was unable to live on his own. Bladder cancer, when you let it go for as long as he did, becomes excruciatingly painful. My wife and I would hear him moan in agony and discomfort as we tried to sleep. I’d often be awoken by the disturbing slams of his bathroom door as he constantly went back and forth from bed with the uncontrollable urge to urinate.
Seeing him relegated to a childlike state was the hardest thing I’d ever been through. The man who once taught me how to throw a punch, ride a bike, fix a flat, and change my oil was now dependent on me to live.
A part of me knew his death was approaching. He knew too. It was an unspoken truth that neither of us could come to grips with and talk about. It came from the same place inside that said, in a strange but obvious way, that his death would actually be refreshing. Mainly for him. All the pain would be over. Like the last moment before falling asleep. A moment that changes from consciousness to unconsciousness in a forgotten instant. From strain to release. Or whatever happens when that switch is flipped.
But at the same time, another part of me thought he’d never die. You never really think it’s going to happen until it does.
I was cold towards him those last few days. Outright rude, actually. And he gave it right back. I didn’t have the time to work a full time job, be a freelancer on the side, spend time with my wife, and care for a man who didn’t plan for his final days, letting the responsibilities fall on me, his only son.
The day before Valentines day, we got in a huge fight. As he lay in bed, unable to get up, we exchanged harsh words that neither of us would have said if we could do it over again. I came home from work and went down to check on him. The room reeked due to his uncontrollable bodily function after his surgery to have his bladder removed and replaced by his small bowel. He fought the nurses in the rehab hospital tooth and nail to get out and didn’t fully recover because he was too stubborn. Back home now, he was too weak to get out of bed other than to attempt to make it to the bathroom before it was too late.
What infuriated me was that he seemed to do nothing to help himself. All the food my wife and I’d make for him would just sit there. Of course he wasn’t getting any stronger — he wasn’t eating or drinking anything. He complained about the taste of the food and how it wasn’t cooked right. I took it as a slap in the face towards us who were trying to help him just like he did to the nurses who tried the same. The same rage boiled up from inside that I experienced as a young man standing by my dying mother’s side half a lifetime ago. A rage that is so intense, but so uncontrollable, born out of love and fear of loss, causing immediate guilt and confusion.
I was done. Fuck it. If he didn’t want to eat, and just wanted to die, there was nothing I could do to stop him.
So I closed off. I let him know how selfish he was being and he let me know how cold and cruel I was being.
On the night of Valentines day, I went downstairs to check on him again. He lay in the same position as he had for what seemed like forever. Supine. The smell had worsened, but at least home care had changed his bed sore dressings so I didn’t have to that night. He mumbled his apologies. He was sorry for throwing the words at me he did the night before. “You’re my valentine, Jonas,” he mumbled in a oxycodone-induced haze, “I’m sorry.”
Those words pierced my soul. This was horrible. This whole situation. I was sorry too. I told him that. But I kept the wall up in order not to lose it right there. I tried telling myself to be empathetic, but just couldn’t quite do it. Come to find out later, the reason he wasn’t nourishing himself had nothing to do with stubbornness. Little did I know that in his gut lay a bacteria that would eventually be his end.
The Last Car Ride
The next day I took him to the doctor for a checkup. He could barely stand when I helped him get dressed. He was severely dehydrated and his lips were drawn back, exposing his teeth like a bulldog. The car ride was quiet. His breathing was heavy. It was awkwardness and discomfort at the highest volume I’d ever experienced.
I saw the look of deep concern from the doctor when he laid eyes on my dad. Quickly taking his pulse and blood pressure, he urged me to get my dad into the emergency room immediately. The combination of dehydration paired with an extremely high heart rate and low blood pressure was alarming.
I knew what was happening, but as soon as the thought emerged, I stuffed it down inside the warm blanket of my psyche to silence it. As we drove to the ER, I kept repeating to myself, he’s not dying. He’s not dying. He’s just dehydrated. He’s not dying.
After pulling the parking brake at the emergency room parking lot, I went around to help him out of the car. As he shifted his body to set his feet on the ground, I stood there, hands ready to assist him up. As I clutched his arms, he remained sitting there, staring at the sky.
That look on his face… That look will never leave me.
It’s like he knew that this was the last time in his present form that he’d experience the open sky. He gazed up with an expression encompassing both awe and consternation. Like a scared child. I didn’t know how to handle that look. Suppress. Suppress. Suppress. Don’t fucking lose it right here. Be in control. He needs your strength.
I got him inside and situated him in the ER. He sat in the wheelchair with that same frightened look that he had in the parking lot. I was overwhelmed whenever I looked at him. I couldn’t be there. He was fine, I told myself. I suppressed the fact that he was on death’s doorstep to the point where I did something that I’ll never fully forgive myself for...
I left him there in the waiting room. I wanted the social workers to realize he needed more help. That I wouldn’t always be readily available for him and that he needed full time care. With me there, they’d do like they did before, and assume that I could provide care for him. But I had a baby on the way with an incredibly busy schedule. I loved my dad to no end, but I physically couldn’t do this any longer.
So I left. I fucking left my father in the waiting room of the ER before he was even admitted. Deep down, I knew he was going to die. But I twisted reality around to make myself believe that he’d be okay. That I could just swing back by after work and pick him up after they put him on fluids for a while.
The pickup never happened.
They kept him in there. He passed a little over a week later. Earlier that day, I gave the command to the doctor that no son wants to give...
Do not resuscitate. Comfort care.
He was septic and in the ICU with an infected colon. Massive amounts of antibiotics were keeping him alive. Later that evening, he passed.
I write this to end the nightmare. Opening my veins and bleeding onto this page is cathartic and as much as part of me says to not open up, a bigger part tells me I should. I’m going to listen to that bigger part this time.
My ego is embarrassed to share this with anyone else, let alone the web, but I feel like it may give me some release and possibly add some value to your life.
James Altucher says to not publish anything that doesn’t scare you when you press the ‘publish’ button. Right now, I’m shaking. But I feel it needs to be done. With all pain comes a lesson learned. I know from experience that God reaches us through the holes in our soul. And if everyone was comfortable enough sharing their nightmares, I believe it would sooth the suffering of countless others. If sharing mine with you brings the nightmare to an end, I’ve succeeded.
I’m not sure what takeaways you can get from this story, but I’m sure there are a few. If you’re a parent, try to make plans for your last days. Make those nasty decisions so your kids don’t have to make them for you. Be the best human being you can be so you can have what you need to make these arrangements. Don’t leave it up to fate. Take charge of the upcoming sunset of life the best way possible. Share your stories and feelings with family, no matter how vulnerable you feel. Death comes to all of us and avoiding it doesn’t make it come any slower. Enjoy the short time you have with your loved ones and be hard on them to take care of themselves. Have those same high standards for yourself.
I hope my story moves you to do the right thing, whatever that is. Be well, and take care of those you love. If the day comes that you have to stand by a loved one’s side on their way out, be kind to yourself. Emotions will come up that seem wrong and unreasonable. It’s okay. Realize there’s only so much you can do and no matter how much your ego tries to take responsibility for what’s happening, you’re not to blame. No one’s to blame. It’s just the cycle.