Dementia: Losing Someone While They Are Still Living

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My grandma’s favorite quote was, “life is what happens while you’re planning it.” She’d say it casually while peeling mangoes or teaching me how to wrap Christmas presents. An amused smile always rested on her face while she said it– as if she was bewildered by the trajectory of her life.

My grandparents took my father and I in when I was not even a year old. My mother had unexpectedly asked for a separation leaving my father heartbroken and faced with his new reality as a single parent. I slept in my grandma’s giant walk-in closet in a humble little house in the desert canyons of Southern California. She took care of me as if I were her own baby. I woke up in her home on Christmas mornings. She hid my Easter Eggs. She played ABBA and Smokey Robinson and danced with her two index fingers wagging in the air. I loved her.

My grandparents retired when I was 12. They were in their mid 50’s. My pop had saved, scrounged, and invested every penny they made to make this happen. His master plan included traveling across the U.S. in a modest RV with sporadic international trips. To make this financially possible, they were to retire to a town in Arizona notorious for its spring break culture and retirement community. This town was six hours away from my father and I. For my grandma, it might as well have been on the other side of the world.

Our family unanimously blames that move for being the catalyst of my grandma’s downfall. My grandma had little living family left, most of whom were estranged. My father and I were her everything. She wore us around her neck in a gold locket that she would subconsciously touch throughout the day. As if some small part of us lived within that locket. Being moved to Arizona made her feel robbed of her happiness — her greatest treasures, stolen. What was weekly dinners turned into (some) holidays and birthdays. The first Christmas I woke up without the aroma of my grandma’s orange rolls baking in the air was, and remains to be, one of the saddest days of my life.

Like so many who find themselves depressed, my grandma turned to the bottle. My grandparents had always been social drinkers so her indulgence went unnoticed for quite some time. Her drunken bouts were her just being “my crazy grandma”. Until, the phone calls started that is. Grandma’s fingers always seemed to find her cell phone and dial my father and I during her binges. She’d be drinking at home alone on a Tuesday. For hours, she would rant on how much she despised living in Arizona. How much she resented my pop. How much she hated life. Seeing her name pop up on my phone cued an eye roll and eventually inspired anxiety. I was just barely a teenager. My father eventually told me to stop answering her midnight calls. What I would do today for her to call me just one more time.

Our family was terrified when my grandma got a DUI. When she got her second, we were in disbelief. My tiny little grandma? My sweet and gentle grandma who couldn’t help herself from feeding baby quail and stray cats? My grandma was now going to be facing a jail sentence and time in a half-way house? She’d call me to tell me about her fellow inmates. We’d laugh at the absurdity of her predicament. Somehow my grandma and I could always found a way to laugh.

She would never drive again. In an instant, she had robbed herself of her a whole lot of independence and even more of her pride. Although the binges ended, the drinking didn’t. Having a couple of cold ones was the theme of my grandparent’s story. Of their identity. For them, sobriety was not the answer.

The first time we noticed something was off, we passed it off as being the effect of too much drinking. She’d mistake us for other family members. She’d forget long gone family pets. She’d tell the same story over and over again and lose every cell phone my pop bought bought her. Yet when the drinking binges ended, her confusion didn’t. The phone calls ceased. The birthday cards stopped arriving.

Dementia creeps up on you. It surprises you. It shows its ugly face slowly, sporadically, and over a non-linear span of time. One day they remember what they ate for breakfast. The next they don’t know the name of their son’s wife of 10 years. Their memory shows itself like a shooting star, instilling hope in all of those who bear its witness. And just like that, it’s gone in a flash. Eventually, we got the confirmation from the doctors: alcohol-induced dementia.

Today my grandma can eat, sleep, and use the restroom.

She can’t make any decisions.
She can’t recall yesterday or even this morning.
She can’t shower herself, put deodorant on, or buckle herself up in the car.
My grandma doesn’t recognize people she’s known for 45 years.
She doesn’t recognize that its her great-grandson who’s sleeping in my arms.

It hurts. It hurts to lose someone while they are still living.

My grandma used to be my everything. She’d sneak me the biggest pieces of artichoke heart before serving it to everyone else. She’d talk with me like I was an adult. She took me to see magicians, acrobats, and ice skating shows. We’d listen to 94.7 The Wave and eat late lunches at P.F. Chang’s. Eight-year-old me would have never guessed that 17 years later I’d be staring at what seems like a stranger.

Sometimes my grandma will spontaneously grab my hand and tell me how much she loves me. These moments are fleeting but precious to me. I hold onto these moments with the awareness that one day she won’t know me. That one day she may fear me as I suddenly become a stranger right before her eyes. Dementia robs not just the person diagnosed or the spouse that suddenly finds themselves as a full-time caregiver: it robs an entire family. It’s impossible not to feel angry or resentful. It’s difficult not to wonder what if’s:

What if she hadn’t drank so much?
What if they hadn’t moved away from everyone?
What if we had visited more?
What if I hadn’t stopped answering those calls?

It’s a heartbreaking and incurable disease that forces you to watch someone’s mind die slowly. Unlike a disease of the heart or lungs, a disease of the brain kills the soul of the person first, leaving the body for everyone to care for.

My grandparents were supposed to travel the world together. They were supposed to be throwing back cold beers on the beaches of Mexico and shooting the shit in a pub on the outskirts of Dublin. My grandma, at the young age of 68, was supposed to revel in being a nana. She was supposed to hold my son in her arms the day he was born. But she didn’t, she can’t, and she never will.

The universe has a grand sense of humor. Life winks at us. We naively think that our lives are going to pan out one way or another. That we are in control. 1 in 6 people will lose their minds to Dementia. It comes without warning and without discrimination. It takes and it takes — the person you know slowly disintegrating like sand between your fingers. It’s painful to be around my grandma at times. Sometimes I feel as though she is standing naked in the center of a room baring herself to everyone and anyone.

This disease has left a lot of destruction and sadness in its path but with the bad in life always comes the good. This disease has taught me to not take my memories for granted. To treat each day as a gift. Its brought me empathy for those who are in the same boat. Its strengthened and deepened my relationship with my pop.

I believe with conviction that my grandma was preparing me for this all along because after all– life is what happens while you’re planning it.

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