Talking with Dad
“Dad, your lunch is here.”
“I hope it’s better than yesterday.”
“That wasn’t so good, eh?”
“Oh, the food was okay. It just didn’t have any taste.”
I cleared off my father’s hospital table to make room for his tray and handed him a napkin. I put his tray down, but he paid no attention to the food as he fumbled with the napkin for several minutes. Finally he handed it to me. “Can you read it to me?”
“Um…there’s no writing on that. It’s a napkin.”
He took it back, peered at it and tried to open it as if it were a pamphlet. Finally he shrugged, “I can’t make it out.”
This was just one of many odd conversations I had with my father in the last year of his life. It took place five months before he died from complications related to Parkinson’s disease. A few months earlier he had also had been diagnosed with Lewy body dementia (LBD), which I’d never heard of. Basically, it resembles Alzheimer’s disease in some ways — persistent forgetfulness, loss of judgment, disorientation — with added features such as hallucinations and severe sensitivity to certain drugs. A catastrophic reaction to a Parkinson’s medication landed Dad in the hospital and led to the diagnosis of LBD, which, truth be told, some family members still wonder about.
Learning to communicate all over again
Along with everything else my family went through during those difficult months, we had to learn to talk to Dad all over again. He had trouble grasping ideas and situations he would easily have understood in the past, and he’d sometimes forget entire conversations that had taken place only hours before. At times we fared pretty well with our efforts, other times not so well.
One memorable struggle was trying to help Dad understand that, due to not only his mental challenges, but also some severe physical limitations, he would not be able to live in the same apartment as my mother at the retirement home they would be moving to in a few weeks.
Not only was this news devastating, but he had a hell of a time getting the details and reasons straight. For a while, he was convinced we were going to make him live in “the basement” because something was wrong, not with him, but with his wife.
“What’s wrong with Marg?” he asked for about the 10th time. “What disease does she have?”
“Marg is fine.” Sigh.
“Well, why do I have to be stuck in the basement?” (None of us had any idea where this basement idea had come from. A dream perhaps?)
Another sigh as I prepared myself to explain yet again. “No, Dad. You’ll be on the enriched care floor since you need more care because of your Parkinson’s disease.” I left out dementia for fear of upsetting or confusing him. “You’ll be able to be with Marg every day.”
“Well, if I have to be in the basement because I’m so deficient….” He paused, putting both hands to his head in desperation. “Can’t we at least build a little room down there?”
“Dad, you’ll have a nice room and it won’t be in the basement.” I cast around desperately for the words that would help him understand. I never found them that day. This conversation would be replayed with other family members.
He surprised me a few days later with a more upbeat exchange in which he “explained” the whole thing to me.
“I was very upset a few days ago.”
“Yes, I remember.”
“But it was all based on wrong information. I thought Marg was going to be on the third floor [of the retirement home] and I had to live in the basement.”
I waited, wondering where this was going. Then he delivered the punchline that left me not knowing whether to laugh or cry.
“But it’s okay. I found out they don’t even have a basement there,” he said, using the confident tone he always did when setting the record straight on something.
Of course, he still didn’t have the whole picture. But I wasn’t about to argue. Anything that helped my father see the future more positively was a step in the right direction. We drifted to other topics.
