As You Progress

The world may not be a stage, but from a young age, I yearned for it to be. After years spent honing my craft through character studies and performing stand-up across Canada, I’ve come to realize how much life mirrors a grand theatrical production.

My aspirations once pointed toward acting. It was theatre that lifted my high school grades, despite my enrollment in chemistry, physics, and math. “I’ll become a doctor,” I confidently stated, all while secretly longing to portray one on screen.

Acting was my true passion.

The play was my ultimate inspiration.

Throughout college, I pursued performance art, which eventually steered me toward stand-up comedy. I craved the adrenaline rush that came from immediate audience feedback and the thrill of thinking on my feet.

Little did I suspect that by the age of 46, I would be leaning on my quick wits and improvisational skills more than during any rehearsal.

I find myself not only as a husband and father but also as a caregiver to my mother, who is battling Alzheimer’s disease, diagnosed in April 2017. Since then, a cascade of medical events has transformed her into a stranger, a far cry from the parent I once knew.

“Altogether” feels ironic; she is now like different fragments of a single whole.

In high school, I learned the law that states every action has an equal and opposite reaction. When a loved one is diagnosed with Alzheimer’s, those around them often react with shock and frantic Google searches.

That was my response.

Alzheimer’s progresses in three stages: mild, moderate, and severe.

It’s important to note these are stages, not types; each one follows the other, like acts in a play.

However, unlike scripted actors, each patient’s journey through not only their mind but also their body is unique and often unpredictable.

There are no lines to rehearse and no films to reference when grappling with the complexities of having a parent with dementia.

Prepare for the Unexpected

Dr. Caroline Menard, a psychologist and coordinator for the Behavioral and Psychological Symptoms of Dementia team at the University of Montreal Geriatric Institute, emphasizes the importance of being ready for the unexpected when caring for someone with this disease.

“You can’t plan everything. It’s futile to think, ‘This is how it will unfold,’” Dr. Menard explains. “It truly varies from one patient to the next, necessitating treatment tailored to the individual.”

Similar to actors bringing their essence to a character, a patient’s personal history significantly shapes how their personality may shift during cognitive decline. “Who was this individual before they became ill? What mattered to them? What did they enjoy? Understanding these aspects is essential for providing personalized care,” she affirms.

Show Respect, Not Condescension

Sabrina Dion, a registered nurse at a private residence for individuals losing their autonomy, echoes this sentiment. She stresses that it’s vital not to generalize when interacting with those facing Alzheimer’s. It’s too easy to liken these adults to children, but they aren’t simply choosing a new role.

“They had fulfilling careers; they are intelligent people,” Dion says. “They are artists, scientists. They are still fundamentally the same individuals. Yes, there have been changes, and their perceptions may differ, but treating them like children is never acceptable. They deserve the same respect as anyone else.”

What About Their Children?

Many of us find ourselves in the “Sandwich Generation,” balancing the responsibilities of raising young children while caring for aging parents. The challenge of becoming a caregiver, particularly for a parent grappling with cognitive decline, can be exhausting and invoke feelings of immense guilt.

Interestingly, a blog post on Alzheimers.net lists scheduling as the first of “6 Ways to Look After a Parent with Alzheimer’s.”

For many parents of young children, predictability often comes in the form of fatigue and the occasional panic of forgetting something important.

On the other hand, Home Care Assistance, which focuses on varied levels of elder care, advocates for an improvisational approach to dementia: “There are no mistakes, only opportunities.”

Avoiding Burnout

Caregiver burnout is a genuine concern. Many people don’t realize they’re experiencing it until someone points out their irritability or emotional fatigue. Regardless of any script we feel compelled to follow, we need support to navigate these lines. Dr. Menard emphasizes that carrying this burden alone is rarely beneficial.

“It’s not wrong to seek help, even if it’s just to gain insights into the disease itself. You need to express your emotions, which can be exceptionally difficult during such challenging times. Managing multiple roles while working and raising young children is undeniably stressful,” she cautions.

Dion agrees and says we should recognize our limits and celebrate the realistic efforts we’re able to make. “Always remember that if you’re acting in your parent’s best interest, your decision is justified. Don’t forget that you also deserve to live your life and nurture your children. This is the natural cycle of life,” she states.

Harnessing Improv Theatre Skills

I’ve noticed that platforms like OpenIDEO offer online improv courses for caregivers. How ironic it would be if the challenges I face now lead me back to the world of spontaneous performance?

Perhaps as I continue to grow older, there will once again be room for theatre in my life. For now, though, my focus will remain on my family and my well-being, with hopes that my parents will benefit from that light.