This is part five of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part one, part two, part three, and part four.
I arrived at dad’s room and what I saw almost broke my heart.
Mom had been sitting in her chair all day. She came to me and we hugged. The lights were out. The only light was coming from the hallway, casting contrasting colors and shadows. Dad lay on his back, emaciated, grey, his face gaunt, white hair and beard unruly, mouth wide open. He looked like a mummy.
“He’s awake,” mom said. “They haven’t found anything yet. They tried to take him for a cat scan and an MRI to see if he’d had a stroke but he complained and they couldn’t get him to be still in the imaging machine.”
“Dad, its Art,” I said, trying not to cry in front of him, lest that bother him.
“Hi Artie,” he nodded.
“I love you dad.”
I kissed him and gently stroked his wiry, white hair. “How come you’re in the hospital? What’s going on with you?”
He struggled to make words and kept repeating the same sentence over and over, while touching different sides of his head. His teeth were out and his speech was slurry and dreamy. He was hard to understand. I kept asking him to repeat it. At times it looked like he was really annoyed that I couldn’t understand. He’d hold his breath, as if summoning enough power to communicate his message clearly. “It’s because the blah blah is blah and the blah blah is blah.” I sat next to him, working out the words.
Johnny arrived with Ann. Ann went to dad in her sweet voice; “Daddy it’s Annie, I wish I could just get into bed and cuddle up next to you.” Dad acknowledged. He knew who we all were, then he started in with the blah blahs again, really focussing on me more than the others. Mom was exhausted and left. Visiting hours were over but we stayed behind. I sat next to dad as he tried to explain.
His face was so white and thin. It was like talking to a plaster cast mold of my dad. I leaned in. I was inches away from his face. His breath was a dry, rotted, earthy stench. The only other time I’d smelled anything like that was when Jen and I went whale watching off the coast of Monterey, CA and we saw humpbacks breaching. It was thrilling and the stench of their breath hit the whole boat like an alien force field and everyone grimaced. At the time, I thought the smell was glorious. It had come from this magnificent creature. And now I was getting that same, strange, putrid smell from my father’s mouth.
I remained positive. I was determined to find out what he was saying, to solve the mystery. I wasn’t leaving the room until I knew what he wanted to tell me and I was satisfied he knew that I understood. At times, he would get upset that we weren’t understanding him and would start over.
I stroked his head; “It’s okay dad, just take your time, we’ll get it.”
Finally we did. He would touch the right side of his head; “It’s because the right side is blah.” Then he’d touch the left side of his head; “And the left side is blah.” I must’ve stayed by his side for 3 hours trying to decipher the message. Then it came. He touched the right side of his head; “It’s because, the right side is hot.” Then he touched his left side; “And he left side is cold.”
“Your left side is feels cold, dad?”
“Yes,” he said. “You mean, like it feels numb?”
“So your right side feels okay but your left side is numb?”
“Yes!” That’s it, we thought. He must’ve suffered a stroke and fallen. We were sure he was telling us his symptoms. We looked closer at his face. Sure enough, his left eye was a little droopier than the right. We thought we had a breakthrough.
A stroke would explain the fall, it would explain his confused state.
It was late. We told dad we had to leave but we’d be back the next day and tell the physician’s assistant, shift nurse or whoever might seem in charge. What would happen the next day was the beginning of a seemingly endless turnstile of doctors, specialists, nurses, assistants and their grab bag of various diagnoses, treatments, therapies and drugs.
I had entered the caregiver ring, stepped inside and rose to the bell to fight alongside my dad and family. We were determined to find out what was wrong with him and get him better. But it wouldn’t be that easy.
As I left his room, the lights were still off, the door open. In the faded light, I kissed him again.
“Dad, we have to go, is that okay?”
He nodded. “We’ll be back tomorrow. I love you.” I held and stroked his hand and said goodbye. As I left the room, the tears fell.
Would this goodbye indeed be the final goodbye?
Johnny looked at me. “Art, I think he might be crying.”
I poked my head inside. Dad was cowering, meekly pulling the sheets up to his head. He was scared. God only knew what his night would be like. I couldn’t bring myself to go back inside. We all left. I’ve never felt so guilty.