When saying no feels like the hardest part of Parkinson’s caregiving
Sometimes we're doing our best yet still question our decisions
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Caregiving brings a kind of guilt that isn’t about making mistakes. It shows up when you try your best but still wonder if it was enough.
I felt that one night with my late Uncle Brandon. He loved the racing drag strip — the sounds, the energy, and being in the middle of it all. It was a place where he could be himself, and for a while, Parkinson’s disease faded into the background.
But earlier that day, he had taken a hard fall and hit his head. He was all right, but it shook all of us. I couldn’t stop thinking about it, even hours later. I kept running through everything in my mind: the long walk from the parking lot, the narrow spaces we’d have to move through, the cold air that always makes his tremors more noticeable.
I thought about how much he enjoyed being there, how he liked to sit back, soak it all in, maybe have a beer, and just feel normal for a while. But I also thought about everything that could go wrong. So I told him we couldn’t go.
I tried to keep it light. I mentioned the weather and suggested we could go another day. I didn’t share everything on my mind or how many different scenarios I had already imagined.
I expected him to push back, to be his usual expressive self, maybe even a little frustrated. But he didn’t. He simply nodded his head and said, “OK, baby.
He sat down, turned on the TV, and barely spoke for the rest of the night. The quiet felt different than usual. In that moment, it felt like I had watched him lose something — not just the outing, but another small piece of his independence. It became an additional reminder that Parkinson’s got to decide what he could and couldn’t do.
Questions of the head and heart
Even though I knew I was trying to protect him, I couldn’t shake the feeling that I had taken something away from him. That’s the kind of guilt people rarely talk about.
It’s not the kind that comes from doing something wrong, but the kind that shows up when you’re doing your best and still questioning yourself. The kind that lingers after a decision made sense in your head but didn’t quite sit right in your heart.
That moment taught me that sometimes the safest choice doesn’t feel the kindest. Sometimes love means saying no, even when you know how much a yes would’ve meant. And as Parkinson’s progresses, sometimes the hardest part isn’t the decision, but what it stands for. It’s a shift, a limitation, a moment when things just don’t feel the same as they used to.
I still think about that night. I still wonder what he felt in that moment, if he knew there was more behind my answer than just the weather. But I learned that caregiving doesn’t always offer clean, comfortable choices. It asks you to hold two things at once: to care deeply about someone’s joy and, at the same time, make decisions that protect them.
Even when those choices are disappointing, they leave behind a quiet kind of guilt. I had to learn that love in caregiving isn’t about being perfect. It’s about showing up, making the best decision you can, and giving yourself grace when things don’t feel perfect. Caregivers often find themselves carrying this type of emotional weight, even when they know they are doing what is necessary.
Sometimes doing the right thing still ends up feeling heavy. Just don’t let that feeling convince you that you got it wrong.
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.
Sharon Spurlin
Another wonderfully frustrating, guilty, awful and repeated conversation is the one about not driving. If he has neuropathy in his feat, his instincts aren't near what they used to be, and he repeatedly has driven his electric motor scooter into the side of the doorway, how can I let him drive the car? My heart is always torn.
Crystal Onyema
Sharon, I felt this one deeply. That conversation is so difficult, and it doesn’t get easier just because you’ve had it before.
It’s such a tough place to be in, wanting to protect someone while also knowing what that independence means to them. That tension you described is very real, and it makes sense that your heart feels torn.
Thank you for sharing this. I know so many people will relate to what you said.
Kristi
It is a hard, long winding road. I had to put my sister in a facility in October after a really bad fall. Her overnight companions were discontinued, her sleep disorder never addressed and she could no longer make safe choices. It's like watching someone walk across the room and parts of them just dissolve, leaving the appearance somewhat intact but the operating system is scrambled. I had not slept properly in over 2 years, even with the overnight help. I don't know if my startle reflex will ever turn off. Sorting through her life treasures & collections of memories and not having room to save them, was really hard. I wanted the best for her, worked hard on diet, supervision, med management etc. She has stopped asking when she can come home. It's harder than if she were gone. She was always bright & active and always in trouble.
Crystal Onyema
Kristi, thank you for sharing this so openly. I can feel how much you’ve carried through all of this.
What you described about watching someone change while still physically being here really stayed with me. That is such a hard and complex kind of loss to sit with, especially after giving so much of yourself for so long. The lack of rest alone is enough to wear anyone down.
Making the decision you made for your sister does not sound easy, but it sounds like it came from a place of deep care and responsibility. That kind of love often asks more of us than we ever expected.
I’m really grateful you shared your experience here. You’re not alone in feeling this way.
Jana
What a perfect expression of love and caring. Your empathy really resounded with me. Thank you for sharing this.
Crystal Onyema
Thank you so much, Jana! That really means a lot to me. I’m glad the piece resonated with you, and I truly appreciate you taking the time to share that.
Wife of Husband with Parkinson's
Thank you for writing this article which I will share with members of my HWP's family who are planning a family reunion at the shore this summer. They are all so excited (and we would be too "if we didn't have Parkinson's"). They are urging and pushing for us to go, but in reality my HWP can't even walk 1/2 block without me having to run home and get the car to bring him home. They don't understand the work involved and none have offered to help if we should decide to do this vacation.
Crystal Onyema
Thank you so much for sharing this. I can feel the weight of what you are navigating, and I truly understand how complicated moments like this can be.
It is hard when others are excited and well intentioned, but do not fully see what day to day life looks like or what it takes just to get through something that used to feel simple. That gap in understanding can make decisions like this even heavier.
You are not wrong for thinking through what is realistic for both of you. Those choices are not always easy, especially when they involve balancing what others hope for with what you know is manageable.
I hope whatever you decide brings you both a sense of peace. And I am really glad the article could resonate with you in this way!
Joel
I cannot imagine a circumstance where I would do choose to not do something my partner wants to do. You didn't describe details, but the information you gave made it seem like HE was willing and probably able, but you weren't comfortable with what it might require of you...
Not the choice I would have made, but we are all unique in our fears and apprehension.
Crystal Onyema
Thank you for sharing your perspective, Joel. I really appreciate you taking the time to read and reflect on the piece.
In that moment, my decision was influenced by everything that had happened earlier that day, especially his fall and the potential risks that came with it. While it may have seemed like he was able, I was also considering what could happen next and how quickly things can change.
Caregiving decisions are rarely simple. Sometimes they involve choosing between what someone wants in the moment and what feels safest based on what you know. I think that is part of what makes these situations so complex. There is not always a clear or easy answer.
I respect that others may approach it differently, and I appreciate you adding your perspective to the conversation!