Joy Johnston - The Reluctant Caregiver: Missives from the Caregiving Minefields

In memory of my parents

Part I: Entering the Caregiver Draft

Introduction

O n my mothers seventy -fifth birthday, she gave birth.

I observed my mothers watermelon belly with a mix of fascination and trepidation. What the hell was growing in there? Im too old for a sibling, and my gut told me this was no bundle of joy.

If the past month had seemed like a nightmare, I found myself waking up to a much worse reality.

Moms monthlong tour of doctors ended with shrugs, none deeming her condition an emergency, even though my Google search of Moms persistent symptoms hit the cancer jackpot each time. The towns lone gastroenterologist noted my mothers distended belly, her vomiting and inability to eat solid food, along with her compromised mental state, and told her to come back in two weeks for a colonoscopy.

My moms fortunate that I assume doctors are full of shit.

Before making the 1,300-mile trek from Georgia to New Mexico, I had called Doctor Dimwits office for more information about my mothers alarming condition. The guard-dog receptionist refused. Your mother needs to sign the information release form. I cant tell you anything without it; thats the law.

When I told Mom she needed to return to the office to complete paperwork, she asked feebly, What, on a stretcher?

Feeble. I never expected to use that word to describe my mother, who seemed powered by an endless energy supply rivaling that of the Energizer bunny. My mother, who only stopped moving when absolutely necessary, was now taking naps in the middle of the day. Even her endless chatter, at once about everything and nothing, had been all but muted, replaced by a hushed hesitancy. She was asking me to take control, another first from my mother, who ruled our family with loving but unyielding authority.

I watched the nurse conduct a series of cognitive tests as part of the home health-care assessment. Mom struggled to draw a clock face showing ten minutes after five oclock, a test given to suspected Alzheimers patients. My dad never received a formal Alzheimers diagnosis, but in his final months, he couldnt even remember how to swallow, let alone tell time.

The nurse shot me a look that screamed, This is fucking serious. What took you so long to get here?

Thanks to Nurse HateMyGuts, Mom received a CT scan the next day. The scan bought my mother a lengthy ambulance ride because she required emergency surgery. A large tumor in her colon had created a life-threatening obstruction, while a sodium imbalance triggered her sudden, yet reversible cognitive decline. The small-town hospital in Ruidoso had no surgeon on duty over the July Fourth weekend, so the staff punted Mom to the nearest big town of Roswell, New Mexico.

My disdain for the brutally hot and dusty alien outpost was already well established because my father spent his final year wasting away in Roswell. Populated with sullen old folks, buzzing flies, big-box stores, and fast-food chains, it's no wonder the bug-eyed aliens have never returned.

As I gazed upon my mothers frail body, hooked up to machines at the hospital, I knew I was staring karma right in the face, and she was laughing at me. Part of me wanted to run like hell, but here was a golden opportunity to absolve my long-distance caregivers guilt, weighing on me since my fathers death six months prior. No siblings, no excuses, no way out. I had to assume the role I dreaded mostcaregiver.

While taking care of my mother, I ran into people who told me that caregiving would be the hardest job of my life, but also the most rewarding one, as they patted me on the back and clucked in sympathy. Hardest? Oh, hell yes. Rewarding? For me, the jury is still out.

I loved my mother, as much as someone can love their polar opposite. My mother, raised on a farm in the holler of eastern Tennessee, who entered the Navy in her late twenties for a taste of adventure, who married someone who was her oppositemy mother was more complicated than her breezy demeanor revealed. Behind the smiling mask lurked an optimist to the point of delusion, and a nervous control freak who overanalyzed what people thought or said about her. Other than my father, I was the only person to see the woman behind the eternally cheery faade, the woman full of worries and doubts. I bore the brunt of the paranoia, the consequences of the undiagnosed obsessive-compulsive disorder, the cruel streak that unleashed when things didnt go perfectly her way.

But my mother undeniably had a big heart, and a genuine love for family, friends, and strangers alike. She cared about animals and the environment, and wanted to help those less fortunate than her. My mother never forgot a birthday or holiday. Much to my chagrin but a testament to her love, I forever remained her little girl, to be cherished and coddled and protected.

She wanted to be loved as much as she loved, and there were times when Dad and I failed her.

The following essays are not your mothers guide to caregiving. No flowery odes to the joy and gratitude in changing a parents diaper. No discussion about dementia just being a different way to experience life. Forget about embracing cancer as a gift that helps you finally prioritize the important things in life. This is caregiving through the looking glass of a realistoverflowing with shit, piss, vomit, fighting, exhaustion, and desperation, and chased with copious shots of humor. And alcohol.

Greetings from the Nursing Home

M y nostrils recoil as they inhale the stinging antiseptic that charges the otherwise stale air. I hold Moms hand, but my ears block out her chitter-chatter. She smiles, she waves, she somehow manages to glow, as if she is a Hollywood starlet walking the red carpet instead of a lonely housewife visiting her husband of forty years in a nursing home. I focus on sucking snatches of air into my lungs and placing one step in front of the other without tripping, to pass in some form or another as normal. Acting normal should be the least of my concerns. After all, Dad resides in the Memory Care unit, the ward for dementia patients.