Jill Bodak’s father, Bill, had a catastrophic stroke on a ski hill in Kelowna in January 2020 at the age of 61. After the two-hour journey to the hospital, half of Bill’s brain had been affected and when they called Jill in Toronto, they said that there wasn’t anything else they could do for him, and he would likely die in the next few days.

Bill’s survival and recovery surprised everyone, including his medical team. His new life with a long list of post-stroke disabilities required a quick shift from his three children into the unknown world of caregiving. It was expected that Bill would be bedridden, unable to understand language or speak, and have very little hope of recovering any normal function. However, from January 2020 to the summer of 2022, Bill fought for every ounce of recovery he could get, and his family navigated our health care system from Kelowna to his hometown of Thunder Bay, to Toronto and back again, to help him any way they could.

This was all, of course, during the beginning of the COVID pandemic, which added another layer of complication including periods of time when they were unable to be with him due to lockdowns. After caring for him at home with limited resources, Bill was moved to an assisted living facility. Interestingly, on the same day as his 88-year-old mother, who said that if he ever needed to move to a care facility, she would go with him.

Throughout all of this, Jill was writing as a way to unload her thoughts and gain some perspective on the intense things that were happening. This journaling turned into over 400 pages of content. When Jill returned home to Toronto, she realized she had more than enough content to be carved into something useful for others.

Jill reflected that round one was getting it on paper (or into her computer), round two was to revisit it and remember all that raw experience (some of which she almost forgot), and round three was to refine it and shape it. “It was a very messy first draft, but the refining of it felt like a friend who was listening to me no matter what I was saying, and it accidentally became a book.”

Jill’s friend who is an author encouraged her to continue to refine the content and write a book. She said, “Part of writing a book requires you to fill a sandbox and then once it’s full you can start making sandcastles.” Jill had an overflowing sandbox to work from.

With the encouragement from his health care team and family Bill made incredible gains in his recovery. He regained some spoken language, understood entire conversations and was able to walk with a cane and a brace on his right leg. Despite the odds, he regained some function and quality of life until he started to experience post-stroke seizures over a year into his recovery. “When I was writing, I thought it would be a recovery story, but when the seizures started, we realized his recovery had peaked, and he began to decline.”

In the spring of 2022, there was a noticeable change in Bill’s mood and willingness for rehabilitation. He began saying,” I can’t do this anymore” and eventually used the motion to cut in front of his throat. “Dad’s post-stroke self didn’t have the language to communicate fully so eventually I asked him if he wanted to die, and once he had that word it was clear that’s exactly what he wanted.”

Bill had a friend who had an assisted death before his stroke, so he was aware of this end-of-life option. Navigating a MAID request in Thunder Bay wasn’t easy, but with some effort they were able to find two assessors to come see Bill. His assessments were difficult to navigate because of his limited ability to communicate, but part of the assessment process is to ensure that, without the help of others, the patient is making the decision for themselves. His first assessment took almost two hours, and the doctor returned a second time to ensure Bill understood this decision he was making.

“Once he was approved, Dad did so much. He went places and saw people. He ate again and really embraced the time he had left. Giving Dad the agency to know that he didn’t have to suffer any longer than he could handle, gave him the ability to use his time with ease. And, we had the Track 2, 90-day assessment period to wrap our heads around the sadness, the beauty and how we wanted to spend our last days with him.”

Jill wrote the last chapter of the book after Bill’s MAID provision. “It was like sitting down with an old friend and saying, ‘let me tell you how this ended.’” Jill hopes this story helps other families navigating end-of-life care – whether through medically assisted death or another choice – and that it helps paint a picture of what providing care for someone from start to finish really looks like.

Love into being: Reflections on stroke and being indestructible is available for purchase here. Proceeds from this project will be generously shared with Dying With Dignity Canada in memory of Bill.