We both know what's happening

A good friend of mine wrote today's issue. I am publishing it anonymously at her request.

This deeply personal essay reflects on the wide range of emotions we feel about family, friends and our own lives – especially when we experience hardship. I hope it will help readers who may be struggling with how to process grief, as so many of us have in the last two years. Please share it with the people you love.

– Malala

Author name withheld

Two weeks after we got the news, I took my mom to the pharmacy to pick up a few medicines. She lingered in the cosmetics aisle, buying time instead of products, in no hurry to go home. But I couldn’t wait any longer. I turned to my mom, ready to say all the things I’d been burying for the last five years.

My phone buzzed in my back pocket. It was Saturday, but one of my colleagues wouldn’t stop calling. My job has no working hours. I’m on call whenever they need me – and lately they needed me a lot.

I wanted to scream at the person on the other end of the phone that their problems weren’t bigger than mine. I wanted to scream at them for calling me about work on Christmas Day in 2018. I wanted to scream, “My father was just diagnosed with Alzheimers. He can’t remember something I told him five minutes ago. I saw this coming and my family didn’t take it seriously. I saw this coming and I kept working and didn’t spend more time with him.”

I picked up the phone and said, “Hi, how can I help?” while my mother scanned the nail polish.

***

Alzheimer’s is a cognitive disease that mostly affects people age 65 and older. It starts with memory loss and ends in death. In the middle, you can lose your ability to carry on a conversation, feed yourself or recognize your loved ones. On average, a person with Alzheimer's lives four to eight years after diagnosis. Despite decades of well-funded research, there is no cure.

It looks like this:

My family is in the early, slapstick stage of Alzheimers. Lately, my dad’s favorite joke is ending calls with “I love you, Gayle” – my little sister’s name. Then he starts to giggle.

The punchline goes, I’m still in here. We both know what’s happening. Let’s have fun while we can.

***

My paternal grandparents had Alzheimers or dementia too. Since I was in high school, my father has lived under the shadow of cognitive disease.

Five years ago when he started routinely losing his car keys, I threw myself into prevention efforts. I bought cookbooks like The Healthy Mind and encouraged my parents to try the recipes. On multiple occasions, I tricked my dad into long hikes, believing that a lifetime of rejecting the great outdoors was just because he hadn’t seen the right trees. I gave him brain-boosting puzzle games. I sent articles with the latest research on links between Alzheimers and sleep, diet and exercise. I sent reports on drug trials and case studies of alternative treatments.

Over the years, I would ask my mom if she’d used the cookbooks and she would always chirp, “Not yet, but I will!” The puzzle games sat unopened in a closet at my parents’ house. No one responded to the articles I sent.

When the diagnosis finally came, I couldn’t understand why they heeded none of my warnings, adopted none of my suggestions. I was sure they could have done more. I asked myself why they didn’t love their children and grandchildren enough to prevent this.

A few weeks later, I sat in my doctor’s office for my annual check-up. He listened as I detailed my family history, my dad’s diagnosis and asked what I could do to avoid this fate for myself.

“You need to eat healthy and do moderate exercise. It’s not the vegans or the marathoners or the Cross-Fitters who live the longest. It’s the old lady who gardens and walks every day,” the doctor said.

And there it was. I knew it. Exactly what I had been telling my parents for years. I nodded my head and tapped my foot. Under my mask, I might even have been smiling.

“But,” he continued, “with your genetic history, there’s really nothing you can do to stop it. These things might help slightly, but they also might not. We have no proven way to prevent Alzheimers and no cure.”

***

Denial, anger, bargaining, depression, acceptance.

- The Five Stages of Grief

All these years, I had been in denial. I told myself if we worked hard enough, we could save my dad’s memory. It was never true.

I am in the anger phase now. It shoots out of me without reason or warning.

I am angry at my high school biology teacher for telling the class we were 10-15 years away from a cure for Alzheimers. I’m angry at my husband for not realizing when the dog chews on her dew claw it means she needs a nail trim. I’m angry at my mom for putting her life on hold to raise children and support my dad’s career. I’m angry that she saved all her best plans for retirement and now she won’t get to do any of it.

I am angry at my sister for saying she might move closer to my parents to help my mom because I assume she thinks I won’t. I’m angry when she gets her dream job and doesn’t move after all.

I am angry that the treadmill I ordered in August still hasn’t been delivered. I’m angry at work for taking all my time and at myself for giving it away. I’m angry at one of my oldest friends for texting my husband to find out if I was okay when I didn’t respond to her because I just couldn’t talk about this any more.

I am angry that my daughter might someday feel like I do now.

***

My mother calls to report on my dad’s latest cognitive test with the neuro-specialist.

“One of the exam questions was ‘How many planes were involved in 9-11?’ He said ‘two’ but then he remembered and changed his answer to ‘three.’ So that was good."

“There were four,” I reply. “Pennsylvania.”

“Oh,” she says. “You’re right.”

***

Last year, an old friend with three little children died of cancer before she turned 40. I heard stories of her family gathered around her bed, singing songs, playing games and watching her favorite TV shows. I want to be like them – but so far, I’m not.

My dad wouldn’t want this rageful, weary version of me. He would want me to remember the Saturdays when he took my sister and I to the movies. Afterward in the parking lot, while we were coming down off our candy high, he would walk us all the way to the car, claim he forgot something and turn us back toward the theater. Just as we’d reach the door, he’d pull out tickets to another movie we wanted to see. “How about a double feature?” he said, while we jumped up and down in excitement.

He would want me to remember the time he, out of nowhere, took French cooking classes and made us four course meals complete with chocolate soufflé, fancier than anything our casserole-based Midwestern palates could imagine.

He would want me to remember him waiting until my mom wasn’t looking and slipping a calculator under my bedroom door so I could finish my math homework faster, come to the yard and toss a baseball with him until the sun set.

***

I am scared of losing my father.

I am scared that one day this will happen to me.

I am scared of wasting the time we have left.