The world may not be a stage, but from a tender age of two, I wished fervently that it was. After years immersed in character exploration and performing stand-up across Canada, I’ve come to appreciate the intricate theatre that life truly is.
My passion for acting was undeniable. Engaging in the world of theatre not only uplifted my average grades in high school but also ignited my aspirations. I took courses in chemistry and physics, asserting with conviction that I would pursue a career in medicine. Yet, deep down, I yearned for the chance to portray a doctor on screen.
From the start, it was always about performance.
Drama was my calling.
My commitment to the arts continued through college, where I eventually gravitated toward stand-up comedy, craving the thrill of instant audience reactions and the challenge of quick thinking.
Little did I foresee that by the age of 46, my improvisational abilities would be put to the test in ways far beyond anything I encountered during rehearsals.
Now, as a devoted husband and father, I shoulder the additional responsibility of being a caregiver to my mother, who is grappling with Alzheimer’s disease. She received her diagnosis in April 2017, and since that moment, a series of medical events has transformed her into someone unrecognizable from the parent I once knew.
The term “altogether” holds irony, as she now embodies fragmented aspects of her former self.
In high school, I recall one scientific principle: for every action, there’s an equal and opposite reaction. When a family member is diagnosed with Alzheimer’s, the common response is often one of panic—and frantic online research followed.
This was certainly my experience.
Alzheimer’s has three stages: mild, moderate, and severe.
It’s crucial to note that these are not different types of the disease but sequential stages, akin to the acts of a play.
However, unlike actors with defined scripts, patients and their experiences differ uniquely, making outcomes unpredictable.
I had no scripted lines or films to consult in preparing for the plot twists that come with having a parent affected by dementia.
Anticipate the Unforeseen
Caroline Menard, a psychologist and head of the Behavioral and Psychological Symptoms of Dementia team at the University of Montreal Geriatric Institute, emphasizes the importance of expecting the unexpected when caring for someone with this disease.
“Planning is futile. You can’t determine in advance how things will unfold,” Menard states. “It truly varies from one patient to another, which is why treatment must be tailored to each individual.”
Similar to how an actor’s personal essence influences their performance, how a patient lived their life before the onset of illness significantly affects how their character changes during cognitive decline. Menard remarks, “Understanding who they were before the diagnosis and what was meaningful to them is crucial for delivering personalized care.”
Honor, Don’t Patronize
Sabrina Dion, a registered nurse at a care facility focusing on patients with diminished autonomy, echoes Menard’s sentiments. She cautions against generalizations concerning those dealing with Alzheimer’s. It’s a common misconception that these individuals revert to childlike roles, which oversimplifies their experience.
“These are accomplished individuals; they have had remarkable careers,” Dion explains. “They are still the same people, despite the changes in their condition. It is never acceptable to treat them condescendingly or as children, as it strips them of their dignity.”
What About Their Offspring?
Many of us belong to the “Sandwich Generation,” balancing the care of our young children alongside aging parents requiring assistance. This dual role of caregiver can be overwhelming, often invoking feelings of guilt and time constraints.
Interestingly, a blog post on Alzheimers.net emphasizes that effective scheduling is among the first steps in caring for a parent with Alzheimer’s.
For parents with young children, life may often feel governed by exhaustion and a constant undercurrent of anxiety about forgotten obligations.
On the other hand, Home Care Assistance, a provider of elder care services, promotes the viewpoint that there are “no mistakes, only opportunities” when adapting to dementia care.
Recognize the Risk of Burnout
Burnout among caregivers is a genuine concern. Often, its signs—irritability, fatigue, and emotional weariness—go unnoticed until someone else draws attention to them. Regardless of the expectations we impose upon ourselves, we must allow others to assist us. Menard cautions against carrying the burden alone, highlighting that seeking help can ease the stress.
“It’s completely reasonable to ask for assistance, whether it’s to gain insight into the disease or for emotional support. Expressing feelings is vital during such taxing times,” she says, recognizing the challenges of juggling multiple responsibilities.
Dion also stresses that we should be forgiving of ourselves, acknowledging the importance of trust in our instincts and recognizing our limits.
“Whatever decision you make will always be for your parent’s best interests, and you should understand that you’re allowed to continue living your life and raising your children. Embracing this cycle of life is essential,” Dion emphasizes.
Embrace Improv Skills
I’ve come across various platforms, like OpenIDEO, providing online improv courses for caregivers. Isn’t it fascinating that the challenges I’ve faced in my current life could, ironically, inspire a return to the improvisational arts?
Perhaps as I age, the world of theatre can call me back, but for now, my focus remains on my family and my mental health, with the hope that my parents will also bask in its positive glow.
