Painting a more accurate picture of being a caregiver

One of my dearest friends, Jen, became a caregiver to her mom while she was barely more than a child herself. Over the many years of our friendship, I’ve gradually uncovered the pieces of her journey as a caregiver.

Growing up, Jen’s family included herself, her mother, her twin brother, and her two older twin brothers. Her father passed away suddenly while her mother was pregnant with Jen and her twin, so Jen never had the chance to meet him.

When her mom was diagnosed with cancer, Jen stepped in as her full-time caregiver, setting aside her studies to devote herself completely to her mother’s care. Overnight, she found herself juggling dozens of roles she was unprepared for: nurse, chef, housekeeper, household manager, medication expert, advocate, emotional supporter, scheduler, insurance expert, driver, companion, and more.

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An all-consuming reality

As I considered dedicating a column to her caregiving journey, I realized how much I had romanticized her experience. In my fantasy, I pictured Jen picking fresh flowers from her mother’s luscious garden, cooking soup and stew with shiny, ripe homegrown vegetables, and dancing and reminiscing with her mom about the good old days.

I imagined Jen soaking up all of life’s wisdom during this time, her mother leaving nothing unsaid. I pictured her learning resilience as her mom shared the struggles she faced after losing her husband at such a young age.

I assumed that they spoke about the importance of appreciating both the big and small things in life, and everything in between. When your time on Earth is limited, you finally understand how vital this is.

When I shared my interpretation of her caregiver’s story, Jen replied, “I wish the end of her life were as you described. She never gardened … and barely cooked. We didn’t dance, but we did look back on a life well lived. We laughed a lot. It was surreal — filled with duality and gratitude, but also sorrow and disbelief. I learned so much and was forever changed. She was strong, funny, and no-nonsense until her last breath.”

It surprised me that, even as a seasoned caregiver myself, my vision of her experience was so far removed from reality. It’s easier to picture my dear friend in a sunlit garden with her mom than to dwell on the exhausting, all-consuming reality of caregiving and advocacy.

On a side note, Jen eventually completed her studies and now works as a therapist specializing in grief, honoring her mother’s legacy. She is a devoted wife and mother to two exceptional young men, emulating her mother’s strength in all aspects of her life.

As I share my own caregiving journey in my column, “The Bright Side,” I aim to be honest about my experiences and paint an accurate picture for my community of readers. Still, I tend to focus on the positives, just as I did when imagining Jen’s story. Perhaps it’s simply more comfortable to reside in the fantasy version of my own caregiving story, too.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.