What I Wish People Understood About Early Onset Alzheimer's Disease

We all have a story that draws upon the conclusion that “a book shouldn’t be judged by it’s cover.” Usually it’s a tale of outward appearances not accurately reflecting the inner struggle or life of the person. While this is true for me, my current chapter echoes voices trying to be in compliment of said struggle. However, by my long pause and deep breath you must assume to have heard, there are times those words shouldn’t be said.

This lengthy chapter in my life could be titled “Alzheimer’s, you’re winning.” It starts with me asking my four children and loving husband to move from our comfortable life in Northern Kentucky just a short hour and change south — where I grew up. That’s because it’s the home of my 54 year old mother, my parent with severe, early onset Alzheimer’s. The moments throughout my pages are twice a week caregiver days, knowing each time I see her, the recognition decreases. And that is a book I could write entirely on its own.

But what must be said, in beautiful italics and against visually appealing white space, is to spend a moment before telling a caregiver that their loved one doesn’t look like something is wrong. And this isn’t just for Alzheimer’s. But let me explain it from my perspective.

I spend hours preparing my mother’s closet for her week. We bought suit bags to create outfits so my father can dress her in something resembling her once adorable fashion personality. I assemble undergarments, socks and shoes and write notes when those items are needed from other bags. I wash the laundry, help hang when I can, and try to cycle the clothes that no longer fit or are the wrong season.

I move on to the bathroom, where again, my time is dedicated to making sure basic hygiene is covered. Did Mom shower? Did Mom shave? Did she put on deodorant? Is there even shampoo in the bottle? We pull out brushes and, on good days, I’m able to pin back a few pieces of hair and get her to splash on some makeup. I always check to be sure she’s wearing her wedding rings and actually has her glasses on her face.

See, that’s the education part of Alzheimer’s. It’s a common over-generalization that it looks like “keys in the fridge.” But, in fact, it’s not knowing what keys are or what they do. It’s losing the cognitive ability to understand the absolute basics of something even as simple as preparing for the day.

Did I sign up for this? Yes. Do I do it as a gift of love to the parents who raised me? Yes. I am asking, however, please do not explain to me that her outward appearance is deceiving. Language that conveys her ability to look “normal” or “like she’s all there” (actual terms used) is infuriating.

I love my mother. Of course, at a social event or communal gathering, I would take the proper time to present her accordingly. But a simple, “she looks great” with a kind smile is more than enough to support my silent battle. Saying it to her and in front of me is even better. She can receive compliments from you — even if she doesn’t know who you are.

I will, however, silently lose my sh*t if you wait for her attention to be diverted and proceed to “compliment” me. For reference, a “compliment” (note the quotes) is being defined as needing to clearly express the difference in the type of person her clothes and hair presents versus the remainder of what type of person she is. I chose those words because, literally, her brain’s plaques and tangles are disintegrating and dying (for medical information, please visit www.alz.org).

For anyone who hasn’t seen or lived this, that means all components of her function, personality, and memory are up for grabs to be completely gone in a moment. So again, to reiterate, please do not waste breath telling me, “Wow, she actually looks good for someone who, maybe, can’t even remember anything,” or “She just looks regular, like, a regular person with no problems.”

For the love of God, no.

As I said, this works in many arenas. There are parents of children with internal struggles who don’t need those kinds of “compliments.” There are numerous illnesses that do not present themselves in a physical form who don’t need to hear it. I’m sure the list could go on, but overall, there are plenty of good looking books with unmatched stories.

So please, next time you see my beautiful mother and me, at her side, please nod and smile. And, if you wish to make her moment special, say “good afternoon” or “wonderful to see you today.” Because sweatpants or skirt, her inner beauty is absolutely not deceiving.