Holding On to the Happy
Christmas is less than a week away. I bought most gifts online, but three came from local shops. Those were the ones I wanted to personally deliver. I called a friend ahead, not wanting the doorbell to surprise her.
When I pulled into her driveway, Diane was bundled in her jacket, waiting.
Because of the virus, we wore masks and did our distancing.
Diane protects Joe, her husband who fights Parkinson’s, and herself. She does whatever needed to support him. Because she loves Joe and other people, this Covid thing can get tough.
Her eyes were all twinkly. I thought that meant she was happy, but I pushed on for a few words.
“How are you doing?” I questioned.
“Really, amazingly well.”
I’m intrigued, knowing she does a boatload of caregiving every day. She looked radiant.
“Something is making this December better for you,” I said. “You look fantastic.”
I wanted to know how she was staying afloat—but we were cold, and I had promises to keep. So I asked, “Can we talk in a day or two on the phone? Hey, would you be willing for me to write about you and Joe?”
“Sure,” she said softly.
*** Two days later.
I started the conversation/interview by asking Diane if she’d tell me about Joe and his Parkinson’s. I knew it had likely progressed. “And I’m interested in how the disease spills over on you."
Diane then said, “Actually, Parkinson’s disease is a brain neurological disorder. It leads to symptoms like rigidity, difficulty walking, tremors, balance, coordination, cognitive losses. Strangely, Joe doesn’t shake. The disease progresses, making it hard for him to walk and even talk at times. Joe is probably in Stage 4 of five stages. He was accurately diagnosed with the disease five years ago?”
I hesitated a moment. “It has already been quite a journey for him and for you. Can you talk about your caregiving—how you are walking this walk with him?”
A short silence. Then she answered, “It’s okay. It helps to talk about it with a friend who listens, gives wisdom, advice, acts a little goofy at times.”
She drew in a deep breath. “I can still feel joy when I have a little fun going on and when I’m aware of the blessings that come our way.”
“Like what?” I ask eagerly.
“Like the VA gifting us with a ramp, a wheelchair, and a lift. Pat, that changed our lives, making everything physically easier to get around, to go see doctors, to get Joe in the bed.”
“Important.” I hold the phone close. “I’m aware Christmas is approaching, and I'm wondering how you guys are managing that.”
“Actually, we are keeping it pretty simple. If we do one big thing a day, that’s it. We then think we deserve a nap, often together. Of course I’m late on Christmas cards, late on Christmas gifts. Because of Covid, we do Mass on the Internet. That way we are following Advent, Nativity, the Christ Child.”
“I’m wondering what gets to you, Diane. You are like a rock.”
“That’s an easy one. What gets to me is realizing I am responsible for Joe being alive. I’m responsible for Joe functioning as well as he can. That is my huge reality. So much is dependent on me. I have to think ahead in six different directions in order to keep Joe safe, always preparing for the unknown. That’s why I need all those prayers.”
“Yes, huge responsibilities, a little like that of parenting young ones.”
Her voice brightened. “Exactly.”
“What do you miss about the old life you’ve had to leave behind?”
“Oh, I miss Joe telling me his thoughts, his opinions. I guess I miss that deeper relationship. He is here, but he can’t participate like he once did. I miss that. I’m the one who now pays the bills, makes the decisions, stays on top of whatever. We used to share those responsibilities. I miss that sharing.”
I didn’t quite know how to ask it, but I plunged in. “Are there ways that you and Joe can still laugh together?”