The Challenge of Being a Caregiver Is Seeing a Loved One Struggle

Mary Beth Skylis avatar

by Mary Beth Skylis |

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As a moderator for the Parkinson’s News Today Forums, I recently posed a question that’s received several surprising responses. I asked our forum members about their greatest challenge as a caregiver for someone with Parkinson’s disease (PD).

I had imagined they might cite medication management, doctor appointments, meal preparation, household responsibilities, or other obstacles. These tasks are complicated for those who struggle with PD. But many of the caregivers’ responses were about watching the disease’s effects on their loved ones.

Many forum members called the disease a thief of joy. They said the most difficult part of their experience was witnessing a loved one struggling. It was hard to watch the decline of someone they’d seen in their prime, and who was once able to complete simple tasks, but not anymore.

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My dad has PD, and I admit that seeing the disease do its handiwork on him is heartbreaking. My strong, intelligent, relentless dad is losing his mobility every time I see him. A year ago, he only occasionally froze to the floor, unable to propel himself into motion again. Today, the freezing episodes are more frequent, and each one lasts longer.

More than any adjustment or change we’ve had to make for this disease, seeing my dad in its grip has been the hardest part. As I learned from the responses to my question, instead of feeling frustrated about the logistics of having to deal with someone with PD, most of us are saddened by the changes we’ve witnessed. We’re heartbroken to see the people we’re caring for robbed time and time again.

The reality is that PD is malicious and unforgiving. And caregivers have one of the most intimate looks at the process. I have a front-row seat to my dad’s suffering. Sometimes, I have to see his bad days, and I wonder if there will be a cure during his lifetime.

I don’t mean to minimize the daily struggles that come with PD. Many forum members said they’re worried about their loved one falling while they’re home alone, or choking, which is a terrifying threat for many Parkinson’s patients. And there is no question that it is extremely scary to be unable to protect our person all of the time.

But I think for me, and it seems for so many others, being forced to watch the disease change the person we knew is perhaps the greatest challenge of all.


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.


Dan Yother avatar

Dan Yother

Mary Beth is right on! I have watched my wife , and her person, degenerate as I have lived with her and loved her. She may not always know who I am, that's ok, I have had the privilege to know her better than anyone else!

Janis Kucich avatar

Janis Kucich

The hardest part for me is also watching the progressive decline in my life partner - it is heartbreaking. Of course I want to make it better, but I can't.


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