Care Partnering—A Love Story

image of couple
John and Margot
Milford Sound, South Island, New Zealand

“I wish you could meet my wife, Margot. We’ve been married for 34 years and—I know I’m biased—she’s the most wonderful woman I’ve ever met.”

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.

Margot is the kind of person who’d get up bright and early, work all day as a Registered Nurse, then teach piano until 9 or 10 at night. Her energy was boundless!

But as her Parkinson’s progressed it took all of that away ­– and more.

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.”

From the day they met, Margot and John have been a team. Since her diagnosis he has helped her have the best life she can. Margot worked for 12 years after she was diagnosed. She’d often be tired so John supported her, however he could. He ran the household and when she travelled for work, John went with her. There were high out-of-pocket expenses and his career certainly was affected. John often says it’s like switching over to “alternate programming.” It’s not what he expected and it is still an adventure.

“We are a pretty good pair, but we wanted to grow our ‘care team.’ We began a Parkinson’s Support Group, which continues to this day. As a caregiver it’s really important that you have a network of people you can call upon for practical help and moral support. Sometimes, when Margot isn’t doing well, I just need someone else to talk to so I can find my hope again,” says John.

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.

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.

Life as a caregiver can be gratifying, and it’s very important to take care of you, too.

“I’m lucky. Margot is very supportive and makes sure I have a life outside caregiving. In the summer I sail with our daughter. I also love photography and music—even if I spend just five minutes a day playing guitar or ukulele I find it improves my mindset.”

John knows every day is a gift, and with it comes new research, new treatments and therapies that are making life better for people living with Parkinson’s. Donor generosity helps Parkinson Canada fund incredible research so one day, there will be a cure and no one will have to switch to “alternate programming.”

For your complimentary copy of Care Partnering: Managing Parkinson’s Disease Together, email info@parkinson.ca or call 1 800 565 3000.

To watch video clips from the Care Partner Summit held in May 2019, read Parkinson Canada Hosts Care Partner Summit

We are here to help—no matter what.

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