My late husband, Wally Toews, lived with Parkinson’s disease for 22 years. Initially, he hid the diagnosis from me, but telltale signs emerged. He was a topnotch tennis player and his serve was the first thing affected. He learned to compensate with a double hand swing, but he wasn’t winning as easily as he once had. He was six feet tall, a head taller than my dad. But in a photo taken of the three of us in 1997, I was shocked to realize that my father now stood taller than my husband. I hadn’t noticed how stooped he had become until that picture forced me to see the changes in him.
Wally was a multi-tasker. We lived by his “critical paths.” I then noticed that he was organizing his day into single tasks. Even going to a movie made him anxious. For such a cool, calm man, this was not normal. Then on Christmas Eve 2000, there was a heavy snowstorm. Wally wanted us to check on our older neighbors across the street, but as we walked, he hung behind me and I heard his shuffling feet. Instantly, it struck me. He had Parkinson’s, the same as his mother and his grandmother — his worst nightmare, and I understood his denial.
From that point he left the caregiving to me. He didn’t want to know anything about the disease. He expected me to learn about it and to guide him through the stages. As a journalist, I learned everything I could about every drug and its side effects and developed strategies to cope with them. My grief began then too because I was looking into our future. I began to detach emotionally so I could do what I needed to do as his caregiver. I had to be tough because he didn’t want to help himself. I refused to let him feel sorry for himself. I expected him to do what he was capable of doing independently for as long as he could. We moved and I renovated the new house to accommodate his progressive decline.
The day came when I had to break my promise to keep him home. He became impossible to handle. As his advocate, one of the practical assistive care nurses asked if I would write a blog to guide them through the different stages and drug side effects affecting their Parkinson’s patients. They relied more on my understanding of Parkinson’s than they were receiving in their official courses. Wally loved the idea so I did it.
In the beginning it was very gratifying. We engaged discussions and shared experiences with other caregivers. But in Wally’s final days in 24/7 palliative care, I had no more hope to offer. I was with him every day. After he died in 2012, I retired the blog, but it is still on the Internet. If our journey can help you, I am thankful it is still available.
Following Wally’s death, Bonnie Toews has met a widower, John Christiansen, also a caregiver. They realize that living in the moment is all we have and they embrace life despite Bonnie having cancer. They are fighting it together and produce a travel series about Bibi & Babu’s journeys around the world. Their mantra: LIVE YOUR DREAM.