When we discuss the adage “don’t judge a book by its cover,” it often highlights how outward appearances can obscure deeper struggles. This resonates with my own journey, where the challenges of early onset Alzheimer’s disease are often overlooked due to misleading outward appearances.
My narrative could aptly be titled “Alzheimer’s: A Silent Conqueror.” It begins with a significant life change, as I made the difficult decision to relocate my family from our comfortable home in Northern Kentucky, just south to my childhood town. This move was driven by the need to be closer to my 54-year-old mother, who is battling severe early onset Alzheimer’s. Twice a week, I dedicate time as her caregiver, witnessing her gradual decline in recognition, a heart-wrenching story all on its own.
What I wish to emphasize, clearly and with intent, is the need for thoughtfulness before telling a caregiver that their loved one appears “fine.” This message extends beyond Alzheimer’s; it applies to various situations where individuals face invisible challenges. Let me elaborate from my viewpoint.
I spend countless hours meticulously organizing my mother’s wardrobe for her weekly needs. We’ve purchased garment bags to create outfits so my father can help her dress in a way that reflects her former vibrant style. I ensure undergarments, shoes, and accessories are paired together, often leaving notes to guide my father in dressing her appropriately. I also assist with laundry, share the task of hanging clothes, and cycle through garments that no longer fit or are seasonally inappropriate.
In the bathroom, my focus shifts to ensuring her basic hygiene needs are met. Did she manage to shower? Is her deodorant stocked? Have we ensured there’s shampoo in the bottle? On good days, I can style her hair and encourage her to apply a bit of makeup. I always double-check that she’s wearing her wedding rings and has her glasses on.
This experience sheds light on a common misconception about Alzheimer’s: it’s not simply about forgetting where items are, like keys in the fridge. It’s about losing the fundamental ability to understand and perform basic daily tasks.
Did I choose this path? Yes. Is it an act of love for the parents who raised me? Absolutely. However, I ask you not to invalidate my experience with comments suggesting that her appearance belies her condition. Phrases like “she looks normal” or “she seems fine” are frustrating and dismissive.
I cherish my mother deeply. At social events, I take care to present her well. A simple “she looks lovely” accompanied by a warm smile is more than sufficient to acknowledge my silent struggle. If you address her directly with a compliment, even better—she can still appreciate your kindness, even if she doesn’t recognize you.
What truly frustrates me is when someone waits for her attention to wane and then proceeds to compliment me, implying a stark contrast between her appearance and her cognitive state. Such comments, suggesting she looks good for someone who doesn’t remember anything or that she resembles a typical individual without issues, are profoundly hurtful.
This sentiment extends beyond my situation; many individuals and families face similar challenges with loved ones who have hidden struggles. There are parents of children who battle internal issues who do not need to hear these kinds of remarks. There are countless illnesses that manifest invisibly, and those affected should not be subject to this kind of commentary. Many beautiful stories remain untold behind polished facades.
So, the next time you see my mother and me together, I kindly ask you to offer a nod and a smile. If you wish to brighten her day, a simple “good afternoon” or “it’s lovely to see you” will suffice. Remember, regardless of her attire, her inner beauty is always evident.
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In summary, early onset Alzheimer’s disease presents unique challenges that are often hidden from view. Caregivers face emotional battles as they navigate the complexities of their loved one’s condition. It is crucial to approach these situations with empathy, recognizing that appearance does not always reflect reality.
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