Caregiving 101: Resources & Support for Parkinson’s Care Partners

Hi, it’s David and Hayley from Life with Parkinson’s!If you’re new here, welcome — we’re glad you found us. To everyone who’s been following our journey, thank you for your continued love and support. We’re back with another post in our caregiving series, and today, we’re talking about something very close to our hearts: how we communicate with each other in a loving and respectful way, especially when Parkinson’s tries to get in the middle of things.

When Talking About Each Other Gets Tricky

One of the things Hayley struggles with sometimes is talking about me when I’m sitting right there — for example, during a doctor’s appointment. It’s tricky.She wants to share details about what’s going on, but it feels uncomfortable to talk about me as if I’m not in the room.

And honestly, I get it. I wouldn’t like that either if the roles were reversed.

For me, though, I usually don’t mind. Whether I’m there or not, it doesn’t really bother me.

Sometimes, I’ll even step out of the room to make it easier for her. But the funny part? Once a nurse asked Hayley, “Is he hitting you or something? Is that why you want to talk alone?” Nope — definitely not! It’s just about respecting the person and what feels right for both of us.

Respect and Sensitivity Matter

It’s easy to overlook small things, but words really do carry weight. For me, as a guy, sometimes words can hit harder than intended.If I say, “I’ve been doing really well,” and Hayley says, “No, you haven’t — you’ve been off for days,” even if she means it lightly, it can sting. I know she’s just being honest, but the way we phrase things can make all the difference.

We’ve learned that it’s not about being right — it’s about being kind and considerate. Parkinson’s already makes communication tough sometimes, especially when I’m “off” and slurring my words or struggling to express myself. That’s when patience and tone become everything.

Living Together 24/7

We live together and spend almost every hour of every day together — thank goodness for sleep breaks! But when you’re constantly around each other, it’s easy to get on each other’s nerves. That’s why we try to be quick to forgive and quick to forget. There’s no point in holding onto something small when we’re going to wake up side by side again tomorrow.

Helping Each Other in Conversations

Hayley does something that means a lot to me — she makes an effort to bring me into conversations when we’re with other people.In group settings, I sometimes struggle to keep up or jump in at the right moment. Hayley will gently include me by saying things like, “Dave was just talking to his mom the other day,” or “Dave’s been trying something new lately.” It might seem small, but that kind of inclusion helps me feel seen. Parkinson’s can make you feel invisible — not because people mean to, but because communication slows down and others naturally fill the space. Hayley helps bridge that gap in such a loving way.

Gentle Words, Gentle Reminders

Another thing we’ve learned is how to remind each other of things without frustration.If Hayley asks me to do something and I get distracted — which happens a lot — she’ll gently say, “Hey, I thought I bought some eggs,” instead of “Where are the eggs I asked for?” That small change keeps the moment light, not tense. We also avoid saying, “Do you remember?” because that can feel discouraging. Instead, we say, “Do you recall?” — it’s gentler and more supportive.

Staying Connected Through Eye Contact

When I’m off, eye contact becomes really important. It helps me focus and communicate better. Hayley will look me in the eyes and wait — patiently — until I finish what I’m trying to say. That kind of respect means the world to me. It’s not about finishing each other’s sentences; it’s about giving each other space to be heard.

Finding Humor in Everyday Life

Of course, we try to laugh along the way too. Like when we called our TV provider to cut the bill, and the lady asked, “What will you do for entertainment?” and I said, “Go to the library — it’s free!” Hayley just shook her head.We both cracked up after hanging up. Humor is one of the biggest tools we have — it keeps us connected, even in the hard moments.

Final Thoughts

Whether you’re living with Parkinson’s or loving someone who is, communication is key. Be gentle. Be patient. Be kind. And when things get tense, remember — you’re both doing your best, and that deserves respect.

Support My Journey

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A Note from Me

Living with Parkinson’s isn’t easy, but sharing this journey with you helps give it meaning. Your comments, messages, and kindness remind us that we’re not alone — and neither are you. If you’re struggling, remember to give yourself the same patience and respect you’d give someone you love. You deserve that too.

Caregiver’s Corner

To all the caregivers out there — thank you. Your compassion, patience, and endless support make an incredible difference. Remember to care for yourself as well. It’s okay to take a moment, breathe, and recharge. You can’t pour from an empty cup, and the love you give deserves to be returned inward, too.

Medical Disclaimer

This blog reflects our personal experiences and opinions about living with Parkinson’s. We’re not medical professionals, and nothing here should be taken as medical advice. Always consult with a qualified healthcare provider regarding any medical questions or treatment options.