We all have narratives that remind us not to judge a book by its cover. Often, these stories highlight how outward appearances can obscure inner turmoil or struggles. This resonates deeply with my current experience, yet my reality is filled with voices that aim to acknowledge this struggle while often missing the mark. So, let’s take a moment to reflect before making comments about a caregiver’s loved one appearing “normal” or “fine.”
If I were to title this chapter of my life, it might be “Alzheimer’s, You’re Winning.” It begins with my husband and four children relocating from our comfortable home in Northern Kentucky to a place just south of where I grew up, in order to care for my 54-year-old mother who suffers from severe early onset Alzheimer’s. Each visit reveals a little more loss, as I witness her recognition fade, and this journey in itself could fill pages.
The lesson I wish to impart is straightforward: please pause before you comment on how well a loved one appears. My mother may look fine, but the reality is much more complex. I spend countless hours organizing her wardrobe for the week ahead, selecting outfits that reflect her once vibrant sense of style. We use suit bags and I label necessary items for my father, who dresses her. I handle laundry, sort clothing, and ensure that her essentials are ready.
In the bathroom, I focus on her hygiene, asking myself: Did she shower? Did she shave? Is her deodorant even there? On good days, I can help her style her hair and apply a bit of makeup. I double-check that she wears her wedding rings and has her glasses on.
This is the education in Alzheimer’s: it’s not simply about misplaced objects like “keys in the fridge.” It’s far more profound, involving a loss of basic cognitive functions—understanding what keys are and their purpose is a monumental shift.
Did I choose this path? Yes. I do it as a gift of love to the parents who nurtured me. But I kindly request that you refrain from telling me how she looks “normal” or “like she’s all there.” Such comments can be deeply frustrating. At social gatherings, I would love to hear “she looks great” accompanied by a genuine smile. That simple acknowledgment can be a comforting balm in our silent struggles.
However, if you wait for her attention to wane and then choose to “compliment” me, it can be maddening. When you say things like “she looks good for someone who can’t remember anything,” it feels dismissive of the reality that her brain is deteriorating. For medical insights on this, I encourage you to visit Mayo Clinic, an excellent resource.
This sentiment extends beyond Alzheimer’s; there are parents of children facing invisible challenges who don’t require such “compliments.” Many illnesses are hidden, and it’s crucial to recognize that appearances can be deceiving.
So, the next time you see my lovely mother and me together, please just smile and say “good afternoon” or “it’s wonderful to see you today.” Whether in a dress or sweatpants, her inner beauty remains untouched.
In summary, the struggle with early onset Alzheimer’s is complex and often misunderstood. It’s vital to recognize that outward appearances can mask deeper challenges, and a little compassion can go a long way.