Lessons revealed in the quiet moments of Parkinson’s caregiving
Driving home gave me the space to process my emotions
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The drive home turned into a quiet ceremony, a gentle transition between worlds I didn’t yet have the language for.
After spending long days with my uncle Brandon, who had Parkinson’s disease, I would get in the car, turn on something soothing and timeless like Sade, and let the music create space for reflection. It was the one time each day I allowed myself to fully process everything I had just experienced.
I still remember one evening clearly, after a day that felt especially long. Uncle Brandon snapped at me because he thought I had given him the wrong medicine, and he didn’t want to do the fun workout I’d hoped would help him stay agile. He had been having a tough few days, getting used to needing his cane more and dealing with new pain and stiffness.
Usually, I could laugh things off. I’d say something playful to get him to chuckle, and then we’d move forward together. Humor had always been our way through. I’d learned that sometimes, being a caregiver didn’t mean doing more, but simply being present.
But that night was different. I felt drained in a way I couldn’t explain — not just physically tired, but emotionally heavy in a way I’d never felt before. I think part of me knew his condition was starting to worsen, and that realization forced me to face a reality I wasn’t ready for.
On that drive home, I understood that I was grieving someone who was still alive.
I was grieving the version of Uncle Brandon whose voice entered the room before his body did. The one who loved yelling playful obscenities at Cowboys games, making everyone laugh, playing dominoes, and lighting up any space he walked into. That man was slowly becoming quieter, more reflective, more reserved. And I didn’t know how to feel about it.
Part of me felt guilty for even calling it a loss. Shouldn’t I just be grateful he was still here? Shouldn’t I focus on the fact that, even with Parkinson’s and the changes in his spark, he was still trying? He still smiled. He still loved. He still showed up however he could. But there were emotions I’d never learned how to make space for before.
Living alongside Parkinson’s means carrying feelings that don’t always have names. As a caregiver, I was learning that some of the hardest parts weren’t physical tasks, but emotional ones.
Giving myself space to feel
That night, during the drive home, I let myself feel everything at once. I cried. I felt grateful that Uncle Brandon had hugged me earlier that day, told me he loved me, and thanked me for looking out for him. I felt grateful that even after snapping at me, he still found the energy to offer tenderness.
But deep down, I also felt a quiet ache I could no longer ignore. This stage of his Parkinson’s journey felt different. It wasn’t something I could brush off with humor or bury for later. It was asking something new of me. It was asking me to sit with the reality of change, of uncertainty, of love that no longer looked the way it used to.
For the first time, I realized I didn’t need to fix how I felt; I just needed to feel it. The emotional aftermath of caregiving doesn’t always come during the hard moments. It comes later, in the car, in the quiet, in the space where there is no one left to perform strength for. It arrives when there is finally room to exhale, when the weight of the day settles in and asks to be acknowledged.
Some things do not need fixing. They just need space to be felt. And sometimes, that space, the quiet, the drive home, the moment after the day ends, is what allows caregivers to keep showing up with patience, compassion, and a little more honesty about what this journey really asks of us.
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.
Debbie
Wow, beautifully written; brought tears to my eyes as these have been my feelings.
Crystal Onyema
Debbie, thank you so much for saying that. It means more than you know.
If it brought tears to your eyes, it tells me you’ve been carrying similar feelings quietly. There’s something powerful about realizing we’re not alone in them.
I’m really grateful the piece resonated with you!
— Crystal
matthew wilmer
my wife right now is dealing with hallucination freezing and is now in the Hospital with a UTI. Infection. My wife parkinson seems to be getting worst she is 85 years old. with parkinson every day seems to be different as a caretaker i just try to do everything i can for her and every day i pray to God for all people who are dealing with this disease.
Crystal Onyema
Matthew, thank you for sharing this. I am so sorry you and your wife are walking through such a difficult season right now.
Hospital stays, infections, hallucinations. It can feel overwhelming when everything seems to shift at once. You are absolutely right that with Parkinson’s, every day can look different. That unpredictability alone can be exhausting.
The way you speak about your wife says so much. Showing up for her each day, doing what you can, and continuing to pray for strength — that is caregiving at its core. It is not small. It matters deeply.
I am keeping you both in my thoughts and prayers. Please know you are not alone in this community.
— Crystal
Brenda Lipson
Thank you for your insight. I find the hardest part of being a carepartner for my husband with PD( for the last 22 years, is the change in communication. Because speech changes, and becomes more tiring, there are days when I feel like he’s a ghost- saying almost nothing all day.
It’s exhausting for the caregiver to have to support the conversation constantly. Speech therapy helped but after doing his daily routine and exercise, therapy etc, he’s too tired to work on that as well.
PD becomes the main focus of your life, despite being consistently working to maintain function. And then, despite all the work we do every day as a team to keep going, he inevitably gets worse, it’s hard to take. It’s like ageing in general, we get weaker, slower, lose independence.
Except PD is like the ageing process on steroids.
What has helped? A regular schedule of rigorous exercise, sleep, healthy diet, DBS surgery, Vyalev ( levodopa pump), socializing through our boxing group, learning everything we can about PD.
Lastly, grieving the losses and laughter. Thank you for caring for your uncle. Success with PD is sometimes slowing progression, maintaining function, grieving loss, and always about living a good life either it.
Crystal Onyema
Brenda, thank you so much for sharing this. Twenty-two years is no small thing. The way you described the changes in communication and the feeling of having to support the conversation constantly really resonated with me. It is a kind of exhaustion that people do not always see.
I love what you shared about routine, exercise, community, and learning everything you can about PD. That steady commitment speaks volumes about the partnership you and your husband have built. “Aging on steroids” is such a powerful way to describe it. Grieving the losses while still finding laughter takes incredible strength.
Thank you for adding your voice here. Caregivers like you remind the rest of us that even in progression, there can still be purpose, connection, and moments of good life. I am grateful you are part of this community!
— Crystal