The reality of life isn’t quite like a stage, although from the tender age of two, I wished it were. Now, after many years spent mastering my craft in character portrayal and performing stand-up comedy across Canada, I’ve come to appreciate the intricate drama that life represents.
Acting was always my aspiration. It was through theater that I managed to lift my dismal high school grades. I ventured into subjects like chemistry, physics, and math, proclaiming, “I’m set on becoming a doctor.” However, deep down, my true desire was to play that role on screen.
From the beginning, it was all about performance.
The play was paramount.
My pursuit of the performing arts continued in college, leading me to comedy. I craved the thrill of immediate audience reactions and the challenge of spontaneity.
Little did I realize that at the age of 46, I would depend significantly on my instincts and improvisational abilities—far more than I ever did during rehearsals.
Now, my identity has expanded; I’m not only a husband and a father, but I’ve also assumed the responsibility of being a caregiver for my mother, who is battling Alzheimer’s disease. Diagnosed in April 2017, her condition has radically transformed her into someone unrecognizable compared to the parent I once knew.
The term “altogether” is a bit of an irony, as she now exists as fragmented pieces of her former self.
I recall the basic principle from high school science: for every action, there’s an equal and opposite reaction. When Alzheimer’s strikes a loved one, panic often ensues, accompanied by frantic searches on the internet.
I fell into that pattern as well.
Alzheimer’s can be categorized into three stages: mild, moderate, and severe.
It’s crucial to note that these stages are not distinct types of Alzheimer’s; rather, they are sequential and inevitable, akin to three acts of a play.
Unlike actors who follow a script, however, patients are unique individuals, making their journeys unpredictable.
I had no script to memorize—no film to watch—that could prepare me for the narrative twists that come with caring for a parent with dementia.
Be Ready for the Unforeseen
According to Caroline Menard, a psychologist and leader of the Behavioral and Psychological Symptoms of Dementia team at the University of Montreal Geriatric Institute, preparing for the unexpected is crucial when caring for someone dealing with this illness.
“You cannot plan with certainty. Saying, ‘This will be how it will go’ is unrealistic,” Menard emphasizes. “Variations between patients are common; thus, treatment must be customized for each individual.”
Just as an actor brings their unique essence to a role, a dementia patient’s life narrative contributes significantly to how their personality may shift over time: “What was their background prior to illness? What were their passions and interests?” Menard states that understanding a patient’s history is essential for offering tailored care.
Respect, Not Condescension
Sabrina Dion, a registered nurse in a specialized residence for those whose autonomy is waning, echoes Menard’s sentiments. She warns against generalizing when communicating with Alzheimer’s patients. It’s a frequent and misguided tendency to equate this experience with adults reverting to childhood.
“These individuals held impressive careers; they are bright and accomplished,” Dion points out. “They remain the same people—they have simply changed in some ways. It’s inappropriate to treat them as children, as they deserve the same respect as everyone else.”
And What of Their Children?
Many of us find ourselves sandwiched between roles, balancing the needs of young children who rely on our guidance and support with those of our aging parents facing cognitive decline. This dual responsibility can be exhausting and often leads to feelings of guilt.
In a blog post on Alzheimers.net, one of the initial tips for caring for a parent with Alzheimer’s is effective scheduling.
For parents of young kids, the only predictability often lies in a haze of fatigue and the fear of forgetting important commitments.
Conversely, Home Care Assistance advocates for a flexible approach to dementia care: “There are no mistakes, only opportunities.”
Avoiding Caregiver Burnout
Burnout among caregivers is a legitimate concern. Often, individuals fail to recognize when they’ve reached this point until someone else brings it to their attention, noting their increased irritability and exhaustion. Regardless of the prescribed role one feels obliged to fulfill, it’s vital to have support. Menard encourages reaching out for assistance, even if it’s simply to gain a deeper insight into the disease.
“It’s perfectly acceptable to seek help, especially when your emotional well-being is at stake. Playing multiple roles while juggling work and young children can be incredibly overwhelming,” she highlights.
Dion emphasizes that we should only expect so much from ourselves, advocating for self-credibility and listening to our intuition and emotions. “Always remember that if the decisions made align with your parent’s best interests, they are the right ones. Don’t forget to prioritize your life and your children’s upbringing. This is simply the natural order of life,” Dion advises.
Embrace Improv Skills
I’ve come across several platforms, like OpenIDEO, that offer online improv courses for caregivers. It almost seems poetic that the challenges I face now might lead me back to those improvisational roots.
Perhaps as I navigate through life, the world of theatre could once again become a part of my narrative. For the time being, however, my focus remains on my family and nurturing my own well-being, with hopes that my parents will also find solace in the light of that spotlight.
