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?”
“Yes. One connection is around the NCIS show. It’s a little like a family, and we both have always loved mysteries. And Joe still loves his westerns, too. I find some of them slapstick, but it helps us to laugh. Very little is more precious than Joe enjoying a good belly laugh, watching TV or when I make a silly joke. It’s important to keep laughing, even when things are serious.”
“Diane, I remember that you used to be a big reader.”
“Yes, I was, but that takes concentration. Now, I read half a chapter and fall asleep.”
“Oh, okay. That’s probably the compassion fatigue.”
Her answer was quick. “That’s right, but Pat, I am beyond grateful to God. He gave me Home Instead to help with household chores and some caregiving, and to relieve me twice a week. When Joe could no longer go to physical therapy at the local VA because of the recent Covid surge, God gave us BRMC Home Health for in-house PT. And with Home Instead, now, if it’s time for a mammogram, I go get it. I no longer feel guilty about leaving Joe for a few hours with a competent person, so I can take care of myself, my health.”
“Right, that false guilt can be a load. Your load is heavy enough. And Diane, if you don’t take care of you, who will?”
She caught my meaning. “Our children want me to take care of me, too. It helps that they keep the communication lines open. Even though they live a distance away, they’ve come to do hands-on work around here. They help us keep going. They understand.”
“Do you ever think, ‘Why me?’”
“No, neither of us do that kind of thinking. We just think…this is reality. We deal with it. No one’s fault here. It is what it is. We either deal with it or Joe has to go to a nursing home. Hard, rock-bottom facts.”
“Diane, is there a plan?”
She followed me. “No, we have a little routine, but we are not tight-fisted about it. We can’t be. We never know what’s going to happen next. We know we’ll eat two or three times during the day, but we are loose about what and when.”
“You are coping, surviving, staying sane.”
“That’s right,” she said. “We try to flow with whatever happens.”
“I don’t think I’m being prejudiced when I say, ‘You and Joe are amazing.’ What else do you want to say about how you live life right now?”
“Well, I know I am not alone. I feel sorrow and joy and everything in-between, but I’m never alone. I know and believe God is in charge, that He holds all of us in the palm of His hand. Christ is with me. People truly love and care about us. I know this. They give and share funnies and time with me. Sometimes I need the gift of time to do nothing critical, like downtime. I need it whether I give it to myself or not. It’s getting easier for me to ask for what I need. I’m learning to accept help, sweet words, a pan of cornbread.”
“Joe is the one with Parkinson’s. You are the caregiver. It’s Christmas. I want to say, ‘Your mindset is beautiful.’”
“Thank you. I’m trying to adapt and prioritize.”
“Hey, you are already there. You separate the important core stuff from the rest, and you tend to it.”
She heard me. “It has come slowly. Every day is different and has its adjustments. The goal is to keep fighting the good fight, do the best we can, and avoid any regrets later.”
“You are doing your caregiving with integrity. And this job you do is right up there behind parenting young children, the toughest job there is!”
Now I offer my thanks to Diane Stefan for sharing this part of her journey with my blog followers and me. What shines through like the stars in darkness is her love. It shows up in her words, daily duties, and sacrifices.
I think Diane and Joe are showing us marital love and how to hold on to the happy, even under the hardest of circumstances. I think it’s beautiful.
P.S. If you think any part of this interview/phone conversation might help a fellow struggler, you have my complete permission to pass it on in whatever form you wish.
Photo of Diane and Joe Stefan taken in 2016 by a member of
Rock Steady Boxing Group (Parkinson disease boxing group).
By the way, the following links go to the Amazon pages of my poetry books.