Wellness

Lessons Learned While Watching My Mother Disappear

What I've learned observing my mother in the throes of disease.

Up until about five years ago, my life, by most definitions, was a course in smooth sailing. I was in my early 20s. I had my health, a plethora of opportunities for careers or further education, a great family and network of friends. Armed with a sizable share of naïveté, I idealized my prosperous future, affording little consideration to would-be obstacles. Sure there were bumps along the road, but I’d never been faced with a large-scale crisis or catastrophe that forced me to sacrifice anything of serious value. No big reason to take stock. Incredulously, I had begun to think I had this thing called “life” all dialed in.

Enter life-altering event. In 2011, in her mid-50s and without warning, my mother began to show worrisome signs that all was not well. Occasional odd statements and absent-minded actions blossomed into larger episodes of erratic behavior and dangerous mistakes. A detail-oriented perfectionist by nature and a nurse of almost thirty years, she forgot how to do a simple procedure at work one day. Coworkers began to take notice. A couple years and several neurologists later, we arrived at her diagnosis — Early Onset Alzheimer’s disease. Shortly thereafter, I decided to move back home and settled in for an unknown journey.

People who haven’t experienced the workings of dementia first-hand or up-close often view it simplistically as its most popularized characteristic — forgetting. “Does your mom remember you?” is the most commonly asked question of me when I share this detail of my life with others. And while you can try to classify the numerous and varied manifestations of dementia under the umbrella of “forgetting,” I’ve found this to be a gross oversimplification.

She isn’t just forgetting memories and people, her entire hard-drive is being wiped before our eyes. Some unwittingly describe dementia as a return to childhood. But to the delight of their parents, children learn and grow. This is not that, and it is more than forgetting. It is trying to drink a candle and tucking the lamp into bed. It is putting her sweaters in the fridge and calling strangers “stupid” in the grocery store. It is reaching to try and touch a hot pan over and over again, because every few seconds, her mind resets. And yes, it is forgetting her daughter’s name.

Five years ago was a different lifetime. I’m on the cusp of 30, but I’ve aged more than five years normally allows for. I’ve become a better human, but at a cost I wouldn’t wish on anyone. My mother is still in the throes of this disease, and I still have more to learn, but here is a sampling of what the last five years have taught me, thus far.

1. Grief comes in many flavors.

Until now, grief and I have not been intimately familiar. Grief, like dementia, is an umbrella term for many subsets of its kind. Some grief is constant, and some strikes without warning. Often, I’ll see a woman about my age out for coffee or shopping with someone I presume to be her mother, and I’ll grieve with envy for that moment. I dwell in the grief of my mother’s losses — that she won’t watch me get married, or hold her grandchildren. I also grieve the theft of countless of her memories, ones I didn’t have the time or foresight to extract from her mind before they were destroyed. Stories she was saving for when I started a family of my own. Perhaps my toughest grief these days assails me when I sit across from her and observe her, immersed in her own world which I am unable to enter. These feelings are nearly impossible to explain to those who haven’t experienced this grieving of the living. But I find myself instantly bonded to those who have. Although it has not consumed my life entirely, the grief is with me always, a familiar presence, just under the surface. Importantly, I’ve learned that while I can’t control my grief, talking through it actually does make it more manageable, and I am less prone to unexpected bouts of overwhelming sadness when I share my grief with loved ones.

2. Platitudes are more offensive than helpful.

Strong disclaimer on this one: I realize everyone is different and many people may find great comfort in common sayings such as “Everything happens for a reason” or “Don’t worry, God is in control.” It so happens that I am not one of those people. If everything happens for a reason, then my perfectly healthy, generous to a fault, grit-filled emergency room nurse of a mother developed Alzheimer’s disease in the prime of her life for a reason. And I cannot ― will not ― accept that. Believing that much of life is pure chance and the world is full of chaos actually brings me quite a bit more solace. Shit happens, and our character is tested and formed by how we respond. Additionally, being on the receiving end of these misguided, albeit well-meaning, remarks has increased my awareness and sensitivity to others in distressing situations. Sometimes when life feels impossible, you need a friend to acknowledge, “This sucks. But I’m going to be here with you in it.” Needless to say, I am now a much better friend in a crisis than ever before.

3. Laughter actually is the best medicine.

Speaking of clichés, I take it all back. I actually hold this one near and dear. I realize I am extremely fortunate that somehow in my mother’s heart-wrenching decline, she has managed to retain the ability to laugh. We aren’t always sure what she is laughing at, but it is always contagious and we savor every moment. I once read that laughter springs from the same deep place as our tears. A deep, instinctual response, conveying a powerful message to those around us. Perhaps her laughter is so medicinal because in those moments, my ever-lingering fears about what she is thinking or feeling are silenced. Our laughter leaves little space for worry while it fills every corner of the room. And as her speech continues to fade, I’m infinitely grateful that laughter remains a language in which we can fluently engage.

4. We are so much stronger and more capable than we think.

As she progressed through each of the mild to severe stages of dementia, I thought, okay this is tough but I can do this — I can adapt. That was, until she got to one milestone in particular that knocked me down — incontinence. Of all the dignity-robbing elements of dementia, this one seemed particularly intent on crushing my spirit. I was a nanny for two small boys. I’ve worked in hospitals and helped patients with all of their toileting needs from diapers to wiping. Poop was never a problem. That was, until it began to involve my middle-aged mother, confused and fighting me at every step. I’ll never forget that first code brown. To say the least, I was very unprepared. I cried for an hour when it was all over, partly from sheer exhaustion, but mostly at how undignified this new phase would be. I knew this was the first of many clean-ups and certainly not the most difficult. But as with the other aspects I’d learned to deal with, this is now a regular part of my routine with my mom. I hardly bat an eye at cleaning and changing her. And the cycle of accepting our new normal has continued. Daunting tasks just don’t seem so insurmountable anymore.

5. You can’t say “I love you” too many times.

I had to end on the cheesiest one. Again, I realize this is highly reflective of my individual experience. My mother is now in a stage where she is constantly talking, but making very little to zero sense at all. She repeats a lot of phrases, throws in a curse word every now and then (cue laughter), and has really latched on to saying the number “two.”

But nine times out of ten, when I lock eyes with her intently and proclaim those three little magic words, she says them right back to me clear as day — and she means it. With hopes that this behavior stays with her until the bitter end, I shower her with “I love you” with great frequency, really every chance I get. Each time, I picture these words igniting some fading neuronal circuitry that ― if jump started enough times ― will spark a fleeting memory or emotion that will overwhelm her mind and body. I’m holding out hope that it keeps a small fire somewhere inside her alive.

This piece was originally published on Medium.

You can also find me blogging at AlzThingsConsidered.

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