How We Make Our Relationship Work With Parkinson’s

“Mrs. Dr. C, I’d like to know how you are doing,” says Neo, Dr. C’s inner voice that facilitates conversations. “Recent events have been stressful, yet you and the good doctor seem to stay calm. There is almost no effect on your relationship. Most couples would have had at least one major argument over these last difficult nine months. How do you do it?”

Mrs. Dr. C stops typing and looks surprised. “Well, Neo,” she replies, “not too many people ask how the partner of someone with a chronic disease is doing. A decade ago, few studies had addressed the relationship between caregiver burden and well-being, specifically with Parkinson’s disease. There is more awareness now in 2021.

“Still, a lot of the focus is directed to the medical issues. And many times, these take precedent over what caretakers might think of as ‘just coping’ on their part.

“You may have noticed that we both get moody and overtired. But we also watch out for each other. We are first friends and partners in this life together. Almost every decision gets discussed before one of us does something that affects the other. Many of our projects and tasks are shared events. He will ask my opinion about his writing or what he’s been doing in the gardens.”

“Dr. C asks for your opinion about the work he is doing? Not many men would,” Neo says dubiously.

“Too often that’s an issue in marital relationships,” Mrs. Dr. C says. “But you’re right about that. It takes a special effort by both of us to develop a team approach to sharing the work of Dr. C. We have different skill sets. Two heads are better than one.”

“Are you saying the chronic illness helps make the marriage beautiful?” Neo asks.

Mrs. Dr. C reflects on the idea. “It’s not that the chronic illness is a beautiful thing. It isn’t,” she says. “It is a reality we must face every day. There are times when it is discouraging or overwhelming. Dr. C writes frequently about how the brain shapes itself around whatever you ask it to do, even when dealing with chronic illness.

“I believe the same is true with a marriage. It shapes itself around what is asked of each person in the relationship, and the flexibility in which life’s demands are met. We try to make it a loving and respectful partnership. That is one reason I don’t like being identified as a caretaker. I’d rather be thought of as someone who is sharing the journey.

“Patience is a term used by many of those who support a Parkinson’s patient. Our mutual positive and encouraging attitudes about how we are handling the disease carries over to our relationship. We have both worked on supporting each other through this,” she says.

Neo reflects on a diagnosis that Mrs. Dr. C received a few years ago. “I remember all the difficult symptoms you had following the Lyme disease infection,” Neo says. “You both put in the hard work to get through that. You still do.”

“It was the partnership that got me through that,” she responds. “There were days I thought I wouldn’t make it. But I kept showing up day after day. Despite his own problems with Parkinson’s and vision loss, Dr. C really supported me through it. We have had to shift our priorities many times to help each other through each new challenge, both his and mine.”

She added: “When dealing with a chronic illness, partnership is an important part of keeping a marriage strong. Both people need to create space for the other’s interests and to be continually supportive. Both share many tasks that need to be accomplished. There are times when I can’t do all that I want to do. Sometimes, my needs require help.

“Dr. C helps if he’s able to. If he can’t, he’ll tell me when he thinks he’ll be able to. That helps me know when I can move forward. This is the beauty in our relationship,” she says.

Neo looks skeptical. “I still find it hard to believe,” he says. “Look at all the troubles and difficulties Dr. C has described recently: deep loneliness, night terrors. How can that be beautiful?”

“As a partner, I share in the pain and hard work, yet also the rewards of finding our way through the difficult times,” Mrs. Dr. C says. “We are not always successful. There are days when we can’t make progress and must wait until life opens another avenue. But our motto is to show up every day prepared, even if it’s just to lay one brick down on the healing path.”

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.