Progressing Forward

Not every aspect of life can be likened to a stage performance, although I have yearned for that reality since I was just two years old. After spending years honing my acting skills and performing stand-up comedy across Canada, I have come to appreciate the intricate theatre that life truly represents.

Acting was my first passion. It was the arts that raised my high school grades from the depths. I took on subjects like chemistry, physics, and mathematics, declaring, “I’m destined to be a doctor,” though deep down, my actual desire was to portray one on screen.

Acting has always been my true calling.

The focus was always on the performance.

My journey continued as I pursued performance studies in college, which opened the door to stand-up comedy. I was drawn to the thrill of immediate audience reactions and the challenge of relying solely on my instincts.

What I didn’t foresee was that at 46, I would need to depend on that same quick-thinking ability and improvisational talent more than ever before.

In addition to being a husband and a father, I now find myself in the role of a caregiver for my mother, who has been battling Alzheimer’s disease since her diagnosis in April 2017. The ensuing medical complications have transformed her into someone unrecognizable compared to the parent I once knew.

The term “altogether” carries irony, as she now exists as fragmented parts of her former self.

One scientific law I recall from high school states that every action has an equal and opposite reaction. When a loved one is diagnosed with Alzheimer’s, those nearby often react with anxiety and an urge to search for information online.

I was no exception.

Alzheimer’s has three distinct phases: mild, moderate, and severe.

It’s crucial to note that these stages are not different types of Alzheimer’s; they represent a continuum, unfolding in succession like acts in a play.

Unlike actors who follow scripts, however, each patient is unique, making their journey unpredictable.

I had no predetermined lines to recite (and no film to reference) to brace myself for the unforeseen challenges of caring for a parent with dementia.

Be Ready for the Unforeseen

Caroline Menard, a psychologist and coordinator of the Behavioral and Psychological Symptoms of Dementia team at the University of Montreal Geriatric Institute, emphasizes the importance of being prepared for the unexpected when caring for someone affected by Alzheimer’s.

“Planning is difficult. It’s futile to assume, ‘This is how it will unfold,’” Menard explains. “Each patient is different, which necessitates a tailored approach to treatment.”

Just as actors bring their individual experiences into their roles—consider how Mel Gibson’s portrayal of Hamlet differs starkly from that of Sir Laurence Olivier—so too do patients’ life stories profoundly influence how they respond to cognitive decline. Understanding the individual’s history, passions, and identity is crucial for providing personalized care,” Menard elaborates.

Treat with Dignity, Not Condescension

Sabrina Dion, a registered nurse specializing in care for individuals losing their autonomy, echoes this sentiment. She cautions against the tendency to generalize when communicating with those suffering from Alzheimer’s. Comparing them to children can be misleading, as it strips them of their dignity and individuality.

“These individuals have held impressive jobs; they are knowledgeable,” Dion emphasizes. “They’re artists, they’re scientists, they’re still themselves. While their circumstances have changed, they deserve the same respect they’ve always been afforded.”

What About Their Children?

Many of us belong to the so-called “Sandwich Generation,” balancing the demands of caring for young children alongside aging parents who are losing their faculties. This role can be emotionally taxing and time-consuming, often accompanied by a sense of guilt.

According to an article published on Alzheimers.net, one of the key strategies for managing a parent with Alzheimer’s is effective organization.

For many busy parents, the only real constant is the overwhelming fatigue that comes with everyday responsibilities, along with the occasional panic over forgotten tasks.

In contrast, Home Care Assistance, specializing in various levels of elder care, suggests adopting a flexible approach to caregiving: “Mistakes don’t exist; only opportunities arise.”

Acknowledge Burnout Risks

Experiencing caregiver burnout is a genuine threat. Often, it’s only when someone points it out that you realize you have become irritable, exhausted, and emotionally spent. No matter what roles you take on, it’s vital to seek assistance. Menard highlights the need for support, especially when you’re juggling multiple roles in a challenging situation.

“It’s perfectly acceptable to seek help, even if it’s just to gain insight into the disease. You must express your feelings, though doing so can be tough when facing such challenges … Balancing work, parenting, and caregiving can place immense strain on you,” she notes.

Dion also reminds us to appreciate our own efforts, acknowledging that we can only do our best while trusting our instincts and emotions.

“Remember that every decision made for your parent’s welfare is fundamentally right. You also have the right to live your life and raise your own children. This is the natural progression of life,” Dion asserts.

Enhance Your Improv Skills

I’ve discovered that various platforms, like OpenIDEO, provide online improv classes for caregivers. Isn’t it fascinating that the challenges I face in my present life might lead me back to my improvisational roots?

As I age, perhaps a return to theatrical pursuits is in my future. Until then, my focus remains on my family’s health and happiness, hoping that my parents can share in that light.