Denial and disbelief are painful for everyone.

As a consultant and coach, I often suggest that clients keep a diary or journal. In it, they can record day-to-day activity, events, and important ideas so they’ll have them to refer to later. Sometimes, the most insignificant of moments captured in a few simple sentences can reveal, in retrospect, great insight and perspective. When I was taking care of my father, I kept a journal, though informal, to monitor health issues and his state of mind – and mine. Here is an excerpt from those pages that revealed the moment he finally realized that he was dying. He passed away only a few short weeks later.

Friday, June 12, 2020

Dad and I were sitting down to breakfast. It was an all-encompassing task, making sure I had just the things I knew he would eat and in a form that he could manage. It usually consisted of Honey Nut Cheerios, canned mandarin oranges, a donut, and coffee. While the weather was good, I made certain he had as much air and sunshine as I could manage for him. So we often had breakfast around 7:30 on the screen porch at the back of my house. I would move his heavy, wooden dining room chair out there and installed a TV for his news or an old western to watch as he ate. We talked sometimes, but nothing too deep. Mostly it was commentary about the flora and fauna visible from his seat or something that caught his attention on TV. One day, we had on a few episodes of Downton Abbey. He would watch and scowl, and return to his food. When he did speak about it once, all he said was, “Them people don’t make no sense.” His insights were still pretty sharp. But, this morning he was quiet. We had a bad night. A very bad night.

Dad was consistently having more trouble sleeping. He was anxious and restless and trying to get up more often. I slept maybe a total of 2 hours throughout the night and we were both exhausted. He finally did sleep for a while but woke at the usual time. Routine was helpful but his adherence to it was decaying. His mind was changing, like his body’s electrical system was suffering some long, slow cascade failure; the Parkinson’s shorting out his mind as much as his body.

All along, Dad had rejected his condition, repeatedly asking the doctor, nurses, and therapists questions like, “They tell me I have this Parkinson’s disease. What is it?” He’d been told over and over. But the truth of it is, we barely have a hint of understanding about what the disease does to each person. Sure, we have a set of symptoms and a list of pointless treatments. But each patient is different. Dad was far worse than any of us realized. He’d not been able to tell us he was actually in a great deal of underlying pain. The nights were the worst and the last couple of weeks had been brutal. His mind just wouldn’t accept it and fought it for a very long time, but he was losing this battle – and he was becoming aware of it.

“What’s happenin’ to me, Ger?” His eyes were tired, afraid. “I don’t know, Dad. But we’re not going anywhere. You’re not going to be alone.” I held my hand on his shoulder and rubbed his back a bit, as he’d done for me so many times as I laid in a hospital bed. I was scared back then, but until now, I had no idea how frightened he and Mom must have been. To watch your child, or your parent, suffer and have no idea how to help them is agonizing, frustrating, enraging.

I helped him finish his breakfast and we sat there for a long time staring out at the back yard as the morning sun moved around the screen porch. He didn’t say anything. He just sat and watched the rabbits bounding around the yard. I collected the dishes and took them to the kitchen. When I came back I paused a moment before going back to the table. I watched him, still, silent, his head bowed, as if in prayer. I considered him for a minute, I didn’t move or speak. Just looked at him. This once strong, proud man, reduced now to a shell of his younger self who had outlived everyone he cared for but his children and his sister. He was so alone, so tired, so helpless, and so sad. I felt alone too. Helpless, tired and sad. I couldn’t save him. I couldn’t even help him be more comfortable at this point. Nothing. I thought about Mom. What would she have done? I lost it.

I felt the tears rolling down my cheeks. I saw him raise his head and look over toward me and that snapped me out of it.

The rabbits were gone now, done with their morning frolic.“Ready to go to your chair?” I said it softly, choking back the emotion as I walked up. “Yeah. I’ll go to my chair.” I pulled his chair out and helped him stand to get hold of his walker.

He was weaker on that morning than I’d ever seen him.

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