When the Person with Parkinson's Comforts the Caregiver
“I’m okay, Mary Beth.” My Dad says between sips of soda. We’re sitting in a local diner, waiting for our food to arrive on a crisp fall day. His words seem to come out of nowhere. We aren’t talking about anything in particular when he drives an arrow into my heart. And his admission of health catches me off-guard. Ow!
Worried about progression
It’s not that his words sting. It’s the idea that we’re battling the clock that pains me. He is okay right now. But eventually, he won’t be. I don’t have to worry right now. But eventually, I will. I don’t want to admit that my Dad’s light is fading.
It isn’t the first time that he has comforted me about his ailments. I worry about him, and he knows it. I don’t want to be away from home when Parkinson's disease gets really bad. So, I’m always on the lookout for hints that indicate we’re getting into the thick of it.
Dad and I have never been particularly great at talking about our feelings. So, I’m not sure how to respond when the tears well in my eyes. I don’t want to cry in public. So I try to joke about my feelings, instead: “I know you are, Hercules.” My retort comes before I realize the words are escaping my lips. Dad smiles, seeing through my pain.
Before deep brain stimulation
I’m a traveler - a writer by trade, and a nomad by choice. Knowing that my Dad is struggling every day creates an internal division. Do I stay or do I go? Although I return home frequently, it’s always a matter of time before I choose to go. And maybe it’s my own guilt that causes me to hide behind my delusions when I tell him: “You’re doing fine, Dad. I was worried this time last year, but I’m not worried right now.”
I’m referring to the pre-deep brain stimulation (DBS) version of my Dad. Just over a year ago, he struggled to stand upright. While he moved across the dining room, his limbs writhed uncontrollably. But he was determined to make it to the couch. He did make it. But the image of his struggle still haunts me.
A break from Parkinson’s
Many DBS patients report that there’s a honeymoon phase when symptoms completely disappear. When my Dad realized he wasn’t so lucky, he told me: “I want to take a long sleep.” And I was afraid to ask just what he meant.
But, slowly, he began noticing subtle changes to his body. When he came off of his medications, his dyskinesia was barely noticeable. He stood tall against the disease, growing confident in his ability to fight back. And, even if it was just for a while, we had a respite. A nice long rest from the constant strain of Parkinson’s Disease.
It’s been a little over a year since a surgeon drilled holes into my Dad’s skull. When Dad tells me that he’s okay, I believe him. Yet I still worry about a time when I won’t be able to believe him anymore.
Do you find music to be an important factor in your life with PD?