We’ve all heard the saying, “don’t judge a book by its cover,” and it resonates deeply with those of us grappling with difficult realities that may not be immediately visible. My current chapter is one of profound struggle interspersed with moments of grace and beauty. Yet, there are times when well-meaning comments from others can feel frustrating and misdirected.
This chapter in my life could easily be titled “Alzheimer’s, you’re winning.” It starts with a significant shift in my family’s life, as I asked my husband and our four children to leave our familiar surroundings in Northern Kentucky to return to my hometown. This decision was driven by the need to care for my 54-year-old mother, who is battling severe early onset Alzheimer’s. Twice a week, I serve as a caregiver, witnessing her decline in recognition and comprehension each time I visit her. This journey alone could fill numerous volumes.
The Importance of Understanding
One key message I want to convey is the importance of pausing before you tell a caregiver that their loved one appears healthy or “normal.” This sentiment extends beyond Alzheimer’s and into various aspects of caregiving. Allow me to explain my perspective.
I dedicate countless hours to preparing my mother’s wardrobe for the week. We’ve invested in garment bags to help her husband dress her in an outfit that reflects her once vibrant fashion sense. I organize her undergarments, socks, and shoes, complete with notes indicating which items are needed. I ensure her laundry is clean and carefully rotate out pieces that no longer fit or are out of season.
Next, I turn my attention to her bathroom routine, where I focus on the essentials of personal hygiene. Did Mom manage to shower? Did she remember to put on deodorant? Is there shampoo in the bottle? On good days, I might even manage to style her hair and apply some makeup. I always check to ensure she’s wearing her wedding rings and that her glasses are in place.
This is an important aspect of Alzheimer’s education. It’s a common misconception that the disease manifests solely in moments of forgetfulness, like putting keys in the fridge. In reality, it’s about losing the fundamental ability to understand and perform basic tasks, like preparing for the day ahead.
Understanding the Caregiver’s Perspective
Did I choose this path? Absolutely. Do I undertake these responsibilities as an act of love for the parents who raised me? Yes. However, I implore you not to suggest that her outward appearance indicates she is unaffected. Phrases that imply she looks “normal” or “like she’s all there” can be incredibly frustrating.
I adore my mother, and at social events, I strive to present her in the best light. A simple, “she looks wonderful” accompanied by a warm smile goes a long way in supporting my silent struggle. Compliments directed at her are even better, as she can still appreciate them, even if she doesn’t recognize the giver.
However, I will become visibly upset if someone waits until her attention is diverted to “compliment” me, especially if it involves drawing comparisons between her appearance and her mental state. Such comments—like, “she looks good for someone who can’t remember anything”—are deeply hurtful.
This message resonates across various situations. Parents of children with unrecognized challenges, along with individuals facing numerous invisible illnesses, do not need to hear such remarks. There are many beautiful stories hidden behind seemingly perfect covers.
A Simple Request
So, next time you encounter my lovely mother and me, please greet her warmly. A simple “good afternoon” or “it’s wonderful to see you today” can brighten her day and remind us both of her enduring inner beauty.
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Summary
Early onset Alzheimer’s disease presents challenges that often go unnoticed by outsiders. Caregivers work tirelessly to maintain dignity and personal care for their loved ones. Understanding and sensitivity from others can make a significant difference in navigating this difficult journey.