An interview with Donna Thomson on Caregiving on November 16, 2023 by George Ackerman, Ph.D, J.D.
Donna Thomson is a caregiver, author, and educator. She is the mother of two grown children, one who has severe cerebral palsy and medical complexity. Donna also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96 and for her stepfather who had Parkinson’s Disease. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014). Donna is a co-designer and co-instructor of The Family Engagement in Research Course as well as the Leadership Academy and she facilitates the Caregiving Essentials Course, all at McMaster University. She is also an advisor at the Canadian Centre for Caregiving Excellence.
Please tell me a little about your background.
I have been a caregiver for multiple family members over the course of my life. At the age of 16, my dad had the first of three debilitating strokes. My Mom, my sister, and I cared for him at home until he died two years later in 1975. In 1988, our son Nicholas was born with cerebral palsy and medical complexity. We cared for him at home until his 23rd birthday when he moved into a nearby medical group home where he now receives 24-hour one-to-one nursing care. My stepfather was diagnosed with Parkinson’s in the late 1980s and he subsequently passed from the effects of that cruel disease. I helped to care for both parents who were in their 80s by the time my stepfather died, and my mom was acting as the primary caregiver. Mom died in 2018 at the age of 96 after living with dementia for the last 7 years or so of her life. My sister and I were her caregivers. Being in a caregiving role for so much of my life has caused me to reflect deeply on the meaning of a caring life. I’ve written books on that subject, and I teach caregiving at McMaster University as well as family engagement in health research.
Can you tell me more about your organization?
I teach the following courses at McMaster University: Family Engagement in Research and the affiliated Leadership Academy as well as the free online course titled Caregiving Essentials. I also host a free monthly webinar series for caregivers linked to that course.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is caregiver training (I don’t think we should have to learn from our mistakes, ie. the hard way). I have spoken to members of the Parkinson’s Disease Association in Ontario, and we have many PD caregivers in the Caregiving Essentials course and webinars.
What type of goals do individuals with Parkinson’s have when working with you?
Most people are seeking to make sense of their experience by giving care (including not only personal transformation but also relationship changes). Others in the “trenches” of caregiving are hoping to find tools and resources to ease the burden of care and navigate complex systems.
What type of training and how long are the programs?
Caregiving Essentials takes approximately 12 -30 hours (depending on prior knowledge) online in the learner’s own time. The course is free and a micro credential from McMaster University Department of Continuing Education is given to those who successfully complete the in-course quizzes (you can repeat them as many times as necessary). I facilitate the discussion boards linked to the course and host the monthly webinars. Family Engagement in Research has its roots in the McMaster University CanChild Disability Research Institute, but the course is for all caregivers across ages and abilities. We plan to scale PD as well as other disease groups.
What effect can it have on an individual with Parkinson’s?
Courses that I facilitate have a positive effect on the caregivers which we know improve patient outcomes.
What would you like to see as a future goal for your programs?
I hope that more caregivers are offered training and support to improve the caregiving experience and relieve the burden of care. Caring for someone with PD and/or dementia shouldn’t be so hard.
What events do you participate in?
I am on the Advisory of the Canadian Centre for Caregiving Excellence and participated in the very recent Canadian Caregiving Summit. I present on caregiver partnered research at academic conferences multiple times every year.
How does this also assist the caregivers?
Heightens awareness and advocates for policy change.
How can someone get in touch? What is your website?
How can others also become advocates for awareness?
Join online and in person support groups, talk to friends and members of extended family and community. Join the local PD Association.
In your opinion what is the key to effective advocacy?
Partnerships and coalitions! I believe in the big tent approach such as in Caring Across Generations and the National Alliance for Caregiving. Of course, we all have individual experiences of illness and caring but together, we are a lot stronger and more powerful for political change.
How can we better fundraise to support a cure for Parkinson’s?
Get private family foundations on board.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Walks in the woods with my dog.
Why should people who don’t have Parkinson’s care about this?
Illness and aging is part of the human condition and caring for others is a civic contribution.
Have you had any family members or relatives affected by Parkinson’s disease?
If you had one song that would tell us more about you or represent your life, which song would it be?
I will Survive
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Ask for what you need and if you don’t get it, ask someone else.