I once heard a monk talk about the process of finding one’s identity. He likened it to looking in a dusty mirror, the actual self obscured until the dust can be cleared away.
Watching my mom’s progression through Alzheimer’s disease was the opposite of that. First, there was a mirror that reflected a vibrant, beautiful woman. With each passing day, the dust gathered, the image growing increasingly cloudy until I could hardly see her at all.
What you should know about my mom is this: Her name was Heide, and she was born and raised in Germany. Every day she drew on perfect eyebrows with a Maybelline pencil, even just to drop me off at school, and she draped herself with oversized costume jewelry because she loved to sparkle. She wanted to travel the world and see the far-flung places she had read about in magazines, but she was diagnosed with early-onset dementia in her 50s before she could take any of the trips she dreamed about.
The diagnosis was a shock. It was like being thrown into a cold pool, and you didn’t even know a pool existed. My family didn’t know anything about Alzheimer’s, or any kind of dementia, for that matter. The disease didn’t even register as a concern or a threat until this diagnosis made it one.
We also had no idea my mom’s mind was already a battleground, that she no longer knew how to tell time, she didn’t know the president’s name, she couldn’t tell us the year. On the outside, my mom appeared the way she always had, but the woman inside was already untethered and difficult to reach.
At the time I was in my 20s, working at my first job as a newspaper reporter, and I approached the disease like any other story. First I read everything I could, from articles to caregiver guides, and when that became too grim, I moved on to the only other thing I knew how to do — write. I filled notebooks with details about my mom’s life. What she ate, how she slept, the confusion. I lived a couple of hours away, but I went home on the weekends and scrawled these notes. Somehow I thought with enough determination and diligence, I could make this diagnosis right. I’d crack this disease, get to the bottom of it, and retrieve my mom. After all, that’s how it worked in my journalism world. Ask enough questions, eventually, you find answers.
I didn’t yet know that the way I construct stories, with a beginning, a middle, and an end, wouldn’t apply in this situation. The narrative had already been lost, and the ending is always the same.
One evening my mom sat in her rocking chair, facing the window, watching cars move up and down our leafy, residential street. Dementia manifests differently in different people, and in my mom, it emerged with fierce paranoia. She was concerned the people in the cars had a secret motive, that the cars themselves were some kind of secret code. She found patterns where there were none. Three white cars in a row sent her into a tailspin.
She looked at me, gripped the sides of her head with her hands, and opened her mouth as if to scream. Instead, there was a long, terrible moment of silence before she said, “My head. Why does it hurt?"
Her voice wavered. By the tone of it, she was exhausted and confused, exactly the way I felt too. There was no way to comfort her or soothe her. She continued to rock back and forth, back and forth, watching cars. Though I held my hand on her shoulder, I couldn’t connect with her.
I think that’s the most difficult part of guiding a loved one through this disease — the aloneness of it. When a loved one is ill with something more tangible, there are ice packs and bandages, there are methods to alleviate pain. But there’s no simple fix when someone has disappeared into that dusty mirror. You simply have to let them go.
Eventually, my mom forgot who I was, and the rational part of me knew it wasn’t personal. The daughter part of me stung from the betrayal.
When my mom was in the final stages of the disease, living full-time at a nursing home, I became unmoored — first figuratively, then literally. I saved up a little money, sold my belongings, and set out to backpack solo around the world. My goal was to complete all those things my mom had wanted to do, even though she had no idea I was doing them.
It seemed like the only way to make sense of this ending — by writing a new one.
I traveled through 17 countries in South America, Africa, and Asia on a journey that would have made my mom proud. I trekked the Inca Trail to Machu Picchu and volunteered at a monkey sanctuary in the Amazon jungle. I rafted down the Nile and encountered a family of endangered gorillas in the mountains of Rwanda. I climbed to the top of Mount Sinai at night and wept at the top of this ancient place, watching the sunrise and knowing my mom was going to die.
Ten years after her diagnosis, my mom took her final and staggered breaths. I flew from Egypt to the U.S. for her funeral, and I said goodbye to who she became.
However, loving someone through Alzheimer’s also means honoring who they once were.
It’s hard. Especially in the late stages, when the disease has stolen so much and the mirror has become unquestionably thick with dust, it’s a challenge to remember the presence they once had. It’s a challenge to remember they were there all along.
In my case, her name was Heide. She was beautiful. And she gave me the world.
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