3 Mistakes I Made Accepting Caregiving Help with Parkinson’s — And What I Learned

Parkinson’s disease brings with it a whole range of changes. Some are surprisingly easy to live with, while others are far more difficult to accept. When I was first diagnosed, I never imagined how much it would reshape not just my daily routines, but also my relationships and the way I saw myself.

Over the years, Hayley and I have learned a lot about navigating this journey together, and I want to share some of those lessons here. In particular, this piece focuses on the mistakes I made when I first started accepting caregiving help from Hayley — mistakes I hope others can avoid.

Acceptance Does Not Mean Giving Up

There’s a quote from Michael J. Fox that has guided me:

“Acceptance does not mean resignation. It means understanding that something is what it is and there’s got to be a way through it.”

Those words resonate because they come from someone who truly understands what living with Parkinson’s feels like. Accepting my situation never meant surrendering or giving up the fight. It simply meant recognizing reality so I could face it head-on.

Once the shock and denial faded, I learned that life goes on. We still have a whole life to live. Parkinson’s may change the terrain, but it doesn’t take away the journey. Acceptance helped me shift from fear to action — from resisting the inevitable to finding ways through it.

I’ve lived with Parkinson’s for eight years now. In that time, I’ve been shocked, angry, and heartbroken. I’ve also learned that even with the disease, life keeps moving. We still have whole lives to live. Once the denial and the fear began to fade, I realized that I could either keep resisting the inevitable — or I could find a way through it.

Mistake #1: Waiting Too Long to Accept Help

My first mistake in accepting caregiving help from Hayley was simple but costly — I waited far too long. Denial had its grip on me, and it caused real problems. I’ve come to believe denial is a natural human emotion. It shields us, at least at first, from the shock of a sudden life change.

Parkinson’s hits hard and fast. One moment you’re sitting in a doctor’s office hearing the words “Parkinson’s disease,” and fifteen minutes later you’re walking out with a prescription for Levodopa and a six-month follow-up appointment. Of course it’s overwhelming. Of course it’s traumatic. Denial springs up almost automatically to try and protect you.

But denial can be like a tsunami wave. Picture sitting on the beach, enjoying a rare holiday. You feel the ground tremble, the water starts to recede, and people around you are running. You’re still sitting there, telling yourself nothing’s wrong — until the wave appears on the horizon, and by the time you see it, it’s too late. That’s exactly how my denial felt.

I told myself I could handle everything on my own — until the day came when I couldn’t. It took me laying in two separate puddles of my own pee (different days, same reality) before I finally admitted I needed help. Parkinson’s can change your abilities in an instant. One day I could walk to the bathroom without a second thought. The next day I’d be frozen halfway there, staring at the toilet, unable even to sit down. Ten minutes I’d be lying on the couch; ten minutes later I could be up walking like nothing happened. It’s mind-boggling how quickly things shift.

If I could go back, I’d accept Hayley’s help sooner. Denial only prolonged my suffering and delayed the relief and safety that her support could have provided. Don’t wait too long like I did. Don’t keep making the same mistake over and over again, expecting a different outcome. When I finally let go of my denial and accepted help, our home and my life became so much more peaceful.

Mistake #2: Taking My Anger Out on My Caregiver

My second mistake was getting angry at the situation. Of course, I was angry — Parkinson’s disease had turned my world upside down, and everything was changing faster than I could keep up with.

Misplaced Anger Toward Hayley

But here’s the thing: I ended up focusing my anger on Hayley. And looking back, I know that was wrong. I’m not making excuses, but I’ve noticed that when we’re struggling, we often take our frustration out on the person closest to us. Wouldn’t you agree? It wasn’t fair to Hayley. She’s the one caring for me every day, loving me, helping me navigate a life that’s suddenly become unpredictable. And yet, there I was, venting my anger toward her. It’s like shooting yourself in the foot over and over again.

Why Anger Happens

I think anger comes from two main places. First, our life isn’t meeting our expectations. I had imagined a life where things were manageable, maybe even fun, where Parkinson’s wasn’t part of the plan. But life doesn’t always work out the way we expect. It hits hard, and it can feel like a betrayal.

Second, our hopes can get shattered. All the plans I had — dreams for retirement, hopes for what our life together would be — they suddenly felt impossible. Parkinson’s had thrown them off course, and with that came anger, frustration, and grief.

Facing Reality

Even though I tried to deny it — telling myself, “It’s not Parkinson’s disease. It’s not that bad” — the reality was unavoidable. I had to face it. And with that reality came feelings I didn’t always know how to handle. Where do you put that anger? I honestly don’t know all the time.

The Lesson Learned

But I do know this: it should never be aimed at Hayley. She is the one who loves me, cares for me, and helps me keep moving forward. When I did misplace my anger onto her, I felt terrible — and I still do when I think back on it.

Mistake #3: Underestimating What Our Relationship Could Become

My third mistake in accepting caregiving help from Hayley was that I didn’t truly see the potential of our relationship. I let all my preconceptions guide me. I thought I would always be “tough Dave,” the guy who powered through everything with youthful energy. In my 20s and 30s, that mindset worked. Even into my early 40s, before my diagnosis at 43, I relied on sheer will and determination to tackle challenges.

The Reality of Parkinson’s

But Parkinson’s disease slowly whittles that energy away. I realized there are limits to what we can do on sheer force alone. At first, I couldn’t see past the loss — the old life I thought I would continue living. I grieved for that life, for the plans and the routines that were suddenly gone. That grief felt deeply personal, almost like losing someone very close to me.

Grieving the Life We Lost

I came to understand that grieving our old lives is a necessary part of moving forward. It’s about acknowledging the pain, the dashed hopes, and the sudden changes. Only by facing that grief could I start to let go of anger and denial. It was a step toward acceptance — not giving up, but understanding the reality of our situation.

Seeing the New Possibilities

As I allowed myself to move past my preconceptions, I began to see the beauty in what was emerging. Hayley’s caregiving wasn’t just practical support; it was a deeply loving and tender expression of care. Her patience, compassion, and attentiveness revealed a depth to our relationship I hadn’t recognized before.

Acceptance Opens the Door

Acceptance — truly seeing our reality — helped me embrace a richer connection with Hayley. It showed me that there’s a more relaxing, more meaningful way to live with Parkinson’s. I can’t believe I didn’t see it sooner, but how could I have? Living this life, day by day, has taught me that there’s always a way through. As Michael J. Fox says, “there’s got to be a way through it.” And this, I believe, is the way through — by letting the relationship grow and letting love and care guide us.

Finding a Way Through

Living with Parkinson’s disease is a journey full of unexpected twists, challenges, and lessons. Looking back, the mistakes I made in accepting help from Hayley taught me more than I could have imagined. Waiting too long, misplacing my anger, and underestimating what our relationship could become all caused unnecessary pain — for both of us.

But through these experiences, I’ve learned that acceptance is not surrender. It’s a conscious choice to see reality clearly, to face it honestly, and to find a way through.

Acceptance allows us to let go of denial, to redirect our anger in healthier ways, and to open ourselves to the love and support around us.

Hayley’s caregiving has been a source of strength, tenderness, and deep connection. By embracing her help, I’ve discovered a more meaningful way to live — one that is not defined solely by Parkinson’s, but by the relationships, love, and moments we continue to share.

If there’s one message I hope comes through, it’s this: don’t let pride, denial, or fear hold you back. Accept support, communicate openly, and allow yourself to grow alongside the people who care for you. Life with Parkinson’s is unpredictable, but there is always a way forward — and sometimes, that way is made easier by leaning on the people who love you most.

Support My Journey

If you’ve found my writing helpful or encouraging, I’d be grateful if you’d consider supporting the work I do here. Sharing my experiences with Parkinson’s and the lessons Hayley and I have learned takes time and effort, but my hope is that it helps others feel less alone. If you’d like to help keep this blog going, you can support me here

A Note from Me

Living with Parkinson’s is never something I imagined, but here we are — learning, adjusting, and finding new ways through it every day. This blog is my honest attempt to share what’s worked for me, what hasn’t, and the lessons that have come from my mistakes. My hope is that you feel a little less isolated and maybe even a little more prepared for your own journey.

Caregiver’s Corner

If you’re a caregiver reading this, thank you for the work you do. I’ve learned firsthand how demanding caregiving can be, and how easy it is for frustrations to spill over on both sides. I hope my stories offer some perspective from the patient’s side that might help you in your role. You’re not invisible. Your care matters. It can be hard, but it can also deepen the bond between you and the person you’re helping.

Medical Disclaimer

I’m not a medical professional, and nothing on this blog should be taken as medical advice. The experiences and lessons I share are personal to me and my journey with Parkinson’s disease. Always talk with your doctor or another qualified healthcare provider before making changes to your treatment, medications, or care plan.