Caregiving and Parkinson’s Disease
Caregiving for someone with Parkinson’s disease is one of the hardest jobs in the world — and one of the least understood. It can look like love, patience, teamwork, grief, exhaustion, fear, frustration, and deep devotion all inside the same day. This section exists because caregivers need support too. Not as an afterthought, but as a central part of the Parkinson’s journey.
My wife Hayley and I have been learning this in real time. Some days caregiving looks like encouragement and teamwork. Other days it looks like managing off periods, stress, role changes, emergency situations, and the emotional weight that comes with watching someone you love struggle. If you’re a spouse, partner, child, family member, or friend in that role, I want you to know: you are not invisible here.
Start Here
- Caregiving 101: Resources & Support for Parkinson’s Care Partners
- 3 Mistakes I Made Accepting Caregiving Help with Parkinson’s — And What I Learned
- Managing Anxiety and Stress in Parkinson’s
- Parkinson’s and Paronychia: How a Nail Infection Nearly Killed Me
What You’ll Find Here
- Communication help — how to talk with love and respect when symptoms, stress, and exhaustion get in the way
- Role-change support — navigating what happens when a partner becomes more of a caregiver over time
- Caregiver perspective — Hayley’s lived experience, including what it feels like to carry the emotional and physical load
- Crisis learning — infection, delirium, off states, and the reality that Parkinson’s emergencies can look very different than people expect
- Family stories — including what Parkinson’s can feel like from the perspective of a daughter
Recommended Reading for Caregivers
- Parkinson’s and My Dad — by Felicia Gebhart
- Urinary Tract Infections and Parkinson’s Disease
- Freezing of Gait in Parkinson’s Disease
- What is Parkinson’s Disease?
A Note to Caregivers
If you’re tired, frustrated, sad, scared, or stretched too thin, that does not make you a bad caregiver. It makes you human. Parkinson’s doesn’t just affect the person diagnosed. It changes the life of everyone close to them. My hope is that this section helps caregivers feel more prepared, more understood, and less alone.