Susan’s Story

Susan was working full time as a Professor of Dance at York University, acting as her husband’s caregiver and raising their young daughter. It wasn’t long before the relentless pace caught up with her.

Susan and Henry were in the prime of their lives when Henry was diagnosed with Parkinson’s disease. Both artists, they had been together since university, as best friends and lovers. Henry was a brilliant composer and Susan a renowned choreographer. They had just adopted a child from China, fulfilling a dream to complete their family. No one could anticipate the tsunami that living with Parkinson’s would bring.

Initially, with proper medication, life was manageable; it was easy to believe that everything would be okay for the foreseeable future. Then Henry fell and injured his knee. A simple visit to the hospital turned into a month’s stay when his medications clashed, sending his cognitive abilities into chaos. Susan remembers, “He didn’t know what day it was or how to sit from a standing position.” Recovery was slow and Susan relied on the help of family and friends to manage. Short-term visits from a professional caregiver were more work than they were worth. Henry’s condition was so complex; it was hard to get someone up to speed on his various needs.

With extensive rehabilitation, life returned to a semblance of normal, but the Parkinson’s symptoms remained. Tremors in his hands kept Henry from his life’s work, playing music. Susan and Henry decided to take a chance on Deep Brain Stimulation (DBS), a surgical treatment designed to improve cognitive and physical conditions for patients with Parkinson’s. They had reason to believe the treatment would bring Henry back to his physical and mental state before he had Parkinson’s. But once again, things didn’t go as planned and Henry had a reaction to the medicine that sent the family into free fall. Another lengthy hospital stay followed.

Weeks later, Susan brought Henry home. Though his physical symptoms had improved drastically, Henry was plagued with increasing dementia and hallucinations. Wandering through the night, rearranging furniture and barricading himself into small spaces, Henry again didn’t know what day it was or how to perform simple tasks. Susan was beside herself with worry. She was losing her best friend. It broke her heart. Had the risk of DBS been a big mistake?

Just when they thought things couldn’t get worse, Susan was diagnosed with ovarian cancer. The family breadwinner, Susan underwent an intensive course of chemotherapy while taking care of Henry and working fulltime. Susan has always been a person that takes charge, the one who takes care of others, but this time the tables were turned. She took care of business the best she could, despite being frail and ill.

Susan weathered the storm; today she is cancer free and the DBS treatment has taken effect. Her best friend is back. Susan says, “I know he will be completely back when he starts playing music again.”

In retrospect, Susan recognizes that for the past year her situation was untenable. With no guarantee that Henry’s condition won’t worsen or her cancer return, she is still in a vulnerable position. We believe people like Susan should not have to choose between their health and their financial security. We need to do better for our caregivers.