We all have narratives that illustrate the idea that “you can’t judge a book by its cover.” This often reflects how external appearances fail to convey the internal struggles of individuals. My own journey resonates with this notion, filled with moments of frustration and the desire for understanding.
This chapter of my life could be aptly titled “Alzheimer’s, You’re Winning.” It begins with my decision to relocate my four children and supportive husband from our familiar home in Northern Kentucky to the town where I grew up, just a short distance south. This move was motivated by the need to be close to my mother, who is only 54 and suffers from severe early onset Alzheimer’s. Every visit brings the painful realization that her recognition of me diminishes, a story on its own.
Understanding the Reality
What I want people to understand, particularly caregivers, is to pause before commenting that someone looks fine. This isn’t limited to Alzheimer’s; it applies broadly. Allow me to clarify from my perspective.
I dedicate significant time to organizing my mother’s wardrobe for her week ahead. We use garment bags to create outfits that reflect her once-vibrant fashion sense, ensuring my father can dress her appropriately. I sort through undergarments, shoes, and accessories, labeling items and managing laundry to keep her closet functional.
In the bathroom, my focus shifts to her hygiene routine. Did she shower? Is there shampoo in the bottle? I sometimes manage to style her hair or apply a bit of makeup on good days. I always verify that she wears her wedding rings and has her glasses on.
This is the reality of Alzheimer’s education. It’s a common misconception that it manifests merely as absent-mindedness, such as leaving keys in the fridge. In truth, it involves losing the fundamental understanding of daily tasks, like preparing for the day.
The Emotional Toll
Did I choose this path? Yes. Is it an act of love for the parents who raised me? Absolutely. However, I ask that people refrain from suggesting her outward appearance is misleading. Comments implying she seems “normal” or “like she’s fine” (actual phrases I’ve encountered) are incredibly frustrating.
I love my mother dearly. At social gatherings, I strive to present her in the best light. A simple “she looks lovely” accompanied by a warm smile is far more supportive than you might realize. If you address her directly, it means even more to me. She may not recognize you, but she can still appreciate your kindness.
That said, I become deeply agitated when someone waits for her attention to wane before “complimenting” me. This so-called “compliment” often highlights the contrast between her appearance and her declining mental state. Remember, her cognitive functions, personality, and memories are fragile and can fade at any moment. So please, spare me comments like, “Wow, she looks good for someone who can’t remember anything,” or “She looks like a regular person.”
A Broader Perspective
This sentiment extends to many situations. Parents of children facing hidden struggles don’t need to hear such “compliments.” Numerous illnesses manifest without visible symptoms, and such remarks can be hurtful. Many individuals present beautifully but have complex stories beneath the surface.
So, the next time you see my lovely mother and me together, please just smile and say “good afternoon” or “it’s great to see you today.” Regardless of her attire, her inner beauty is undeniable and deserving of recognition.
Further Reading
If you’re interested in more insights on related topics, consider checking out this blog post. For those looking for resources on male fertility, this authority can provide valuable information. And if you’re curious about the IVF process, this resource offers an excellent overview.
Conclusion
In summary, understanding the emotional and cognitive challenges faced by individuals with early onset Alzheimer’s can foster compassion. Instead of making assumptions based on appearances, recognize the deeper struggles and offer genuine support.