A person’s life story changes after a diagnosis of Parkinson’s. There begins a chapter of collaboration in care that eventually evolves into more hands-on caregiving. And whether you are caring with or for that person, it is guaranteed to involve you more and more over time and increase your understanding of the experience of another person.
Caregiving is a part of the societal fabric of most cultures. You may have witnessed others taking care of people in your family and community. Care partnering is often adopted and learned based on a change in life circumstances by those who face illness or injury. And you may or may not be prepared. Having the knowledge, practicing the skills and using the tools available to you will help.
A Parkinson’s diagnosis changes a person’s life almost overnight. In fact, it has dramatically changed yours, too. Being a care partner is a role that you take on and grow into.
Care Partnering—A Love Story
John Parkhurst knows all too well what it means to be a care partner. His wife, Margot Bartlett, has lived with Parkinson’s for over 30 years. As a registered nurse, Margot thought she may have Parkinson’s. Still, the day they heard the diagnosis was gut-wrenching. It felt like a loss that could never be replaced. Margot was just 42 then. Their daughter was only four years old.
Parkinson’s doesn’t just affect the person diagnosed; it changes the lives of all those around them—spouses, children, friends, and their caregivers.
John became her primary caregiver. It shattered the hopes and dreams they shared for a life together. It set them on a different path, and yet it never tore them apart.
“For me, being a caregiver is as rewarding as it is challenging.”
Their lives were enriched when they found Parkinson Canada. Both Margot and John have served on the Parkinson Canada Board of Directors. Drawing on their lived experience, John has been a strong advocate for caregivers, and that’s why he is delighted with the release of the new publication, Care Partnering: Managing Parkinson’s Disease Together, a book made possible through the generous support of donors across Canada.
Care Partnering: Managing Parkinson’s Disease Together
This practical, insightful book is an invaluable resource. It delivers supportive, accurate information to caregivers, and references to other resources that are a big help when navigating a Parkinson’s journey. John sincerely wishes there was something like it back when Margot was first diagnosed.
Table of Contents
- Introduction | 10
- What is Care Partnering? | 10
- Chapter 1: The Care Partner Identity | 14
- Chapter 2: Care for the Care Partner | 31
- Chapter 3: Tips and Strategies | 55
- Getting organized
- Communicating with health professionals
- Safety Considerations
- Chapter 4: ACT on Time™ Program | 71
- Chapter 5: Tips and Strategies | 83
- Secondary Care Partnering
- What Not to Do
- Long-Distance Primary Care Partnering
- Chapter 6: Paid Help | 83
- Chapter 7: Advanced Parkinson’s | 101
- Chapter 8: Planning Ahead | 131
- Chapter 9: Planning and Decision-Making | 143
- Chapter 10: When Care Partnering Ends | 151
- Resources | 156
- Appendices | 194
- CarePartner Worksheets
- Glossary of Terms