Nadine Belliveau is helping to plan her only daughter’s wedding next summer, but a shadow hangs over the anticipation and joy of the event.
“We’ll have the wedding in my backyard because I’m unable to travel,” says Ms. Belliveau, who lives in New Edinburgh, a small community in southwestern Nova Scotia.
At 61, Ms. Belliveau is grappling with a terminal illness of unknown cause. What she does know is the disease will most certainly end her life.
After extensive tests under the care of her family doctor, four neurologists and consultation with physicians internationally, she was diagnosed with polyradiculopathy. The nerves in her central nervous system are dying.
Cycle of constant pain
What began as numbness in her toes has spread to her upper thighs and low back. “I can no longer walk or dress myself, I’m incontinent and I’m beginning to have trouble speaking,” she says. “At some point, I won’t be able to talk at all, I won’t be able to swallow – my condition will continue to decline. I’m in pain every hour of every day, there is absolutely no let up.”
She isn’t taking pain medication because she doesn’t like the side effects, but she recognizes that her French Acadian stoicism will only take her so far.
As a retired registered nurse, Ms. Belliveau has seen how people suffer at the end of life. She also remembers the suffering of her family members, including her brother who battled Hodgkin’s lymphoma. At the end of his life, he couldn’t breathe on his own and experienced terrible pain.
Her mother had dementia and suffered frightening hallucinations. She expressed wishes to die, but Ms. Belliveau could not help her. “My hands were tied,” recalls Ms. Belliveau. “There was nothing I could do to help end my mother’s suffering at that time.”
An empowering option
Guided by those personal experiences, Ms. Belliveau is writing her own ending by declaring her intention to seek Medical Assistance in Dying (MAID). “I want control over my disease so that if I choose to, I can end my life,” she says. “I want to die with dignity.”
Ms. Belliveau had been saving money to travel out of country to end her life. “I’m so glad that doctors are able to provide assisted dying in Nova Scotia,” she says. “Now I’ll be able to spend the money on my daughter’s wedding rather than my death.”
Having support from her family is key for Ms. Belliveau. “At first, my husband and daughter were completely against the idea, but less so now. They see my struggles are getting worse every day,” she says.
Dr. Tim Holland is one of a handful of physicians in Nova Scotia who provides MAID. He describes it as one of the most difficult, yet rewarding, aspects of his practice.
“The beauty in the procedure, which I only realized after starting to do this, isn’t the relief of suffering but rather it’s giving back control to the patient,” he says. “Having the option truly empowers the patient in a way that is very hard to articulate. It gives them control over their suffering.”
Patients can have their loved ones with them to say goodbye and express their love and emotions together one last time. “We do everything we can to respect the patient’s wishes and the patient and family are so grateful, despite the incredible grief they are feeling,” he says.
Medical assistance in dying is an emotionally charged topic, but it’s easier to understand when you have the information you need. For more information on MAID, read our post, Medical Assistance in Dying: What you need to know.