Caregiving is a journey that requires sacrifice, selflessness and vast amounts of strength. But the rewards are sometimes joy and often the knowledge that we did the right thing by ‘abiding with’ the people we love most in the world in their time of need. The journey is often times emotional and unexpected. In the newly released, The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver, Donna Thomson and her co-author Dr. Zachary White explore the personal changes that occur in caregivers’ responsibilities, beliefs, hopes and expectations. We sat down with Donna Thomson to talk about these themes and learn how we can better understand and support the caregivers in our lives.
Donna began her caregiving journey as a teenager with her father, who suffered three debilitating strokes. She lived at home with her mother, and helped to care for her father until his passing in 1975. Her journey did not end there. In 1988 Donna had her first child, Nicholas, who was born with cerebral palsy and medical complexity. Donna had to adjust to her new life, as she ran an in-home ICU until her son was 24. Nicholas then moved to a nearby care home where he receives round the clock nursing care. Ten years ago, Donna together with her sister, began caring for their mother who eventually passed in the summer of 2018 at the age of 96. Donna is no stranger to the ups and downs of caregiving.
From the time of her son’s diagnosis, Donna has advocated not only for her son, but also for caregivers. Knowing that so many caregivers suffered from a lack of support, she set out to help others. Donna explained that she and her co-author Zachary “Wanted to really do a deep dive into the way caregiving transforms the caregiver, and changes people permanently. You can never go back to the person that you were before you became the caregiver”. She also noted that she strived to help and support other caregivers when it came to understanding and talking about their day-to-day journeys:
“We decided to look at the language that people can use to describe their caregiving experience and make sense of their own personal life story – one that includes their caring role. Caregiving derails all of your plans. Nobody knows how to really explain that… We talked about the transformation that occurs, how to describe it and how to use that life story and new understanding of your life to act differently in your community with coworkers, family and the clinical team. We set out to help caregivers begin to integrate their caregiving into life as it is now, given all the givens. It is a reorientation to a new reality”.
Donna also wanted to help caregivers understand how to express their thoughts and journey without feeling selfish or judged:
“… I have never actually seen much out there that really speaks to the complexity of the experience; the paradox of the combined burden and the joy of giving care. The double-edged sword of everything. We really wanted to address that complexity and we did not want to be prescriptive…It’s a deep reflection on how it’s possible to think differently about your life, your expectations and your relationships given the intense intimacy involved in caregiving and the inevitable face to face encounter with vulnerability and mortality.”
There are many things that new caregivers may not understand at first. Donna explains that when her journey first began “I laboured for quite a few years over the misconception that I could control outcomes. If I had enough love and willpower, I could make my son better. I didn’t realize that I was up against the forces of nature”. She also adds that “I would like [caregivers] to know that it is possible to talk about caregiving in a way that can help you craft a personal story that includes caregiving. If you have that story, you can act differently in your community, family, and with your loved one. Your life will be changed, and in many ways changed for the better”.
The Unexpected Journey of Caring is Donna’s second book. She is also the author of The Four Walls of My Freedom, a memoir chronicling her fight for advocacy and her son’s human rights. In her first book, Donna reflects on the meaning of a life, specifically her son’s life – someone who is completely dependant on others. She dives into the philosophical views of caregiving and advocacy as well as the importance and usefulness of services available to caregivers . Donna asks questions such as “what makes my son’s life worth living?” and “why should the public care about sharing in the cost of my child’s medical care?” You can also read Donna’s recent interview with The Globe and Mail here.