My father was diagnosed with Alzheimer’s Disease after a weeks-long process that involved a physical exam, blood work, a brain scan, a spinal tap, and neuropsychological testing.
He went through the process only because I asked him to, not because he was concerned. Many months later, I found stacks of handwritten notes that he’d made to remind himself of ordinary tasks such as how to print a document from his computer to the names of key people in his life, including my mother, to whom he’d been married for 43 years when she died.
After the testing was complete, we met with the neurologist on a sunny, warm Wednesday afternoon in a windowless office tucked deep inside a geriatric hospital.
The doctor, a nice and efficient young man with long hair held in a ponytail with an elastic band, smiled as we sat down. My dad was relaxed. I was tense.
Dr. Hales went straight to the point. “After all of the testing we’ve done, there’s no question that you have Alzheimer’s Disease. We can’t give an absolute diagnosis without dissecting your brain, but we found beta-amyloid proteins in your spinal fluid, and that’s the next best thing. All of the evidence is consistent.”
I glanced at my dad as Dr. Hale’s voice morphed into a background drone. His posture hadn’t changed: his face was open and somewhat impassive, just listening as the doctor passed his sentence.
I felt something in my hand as I looked at my dad, and I saw that Dr. Hales had handed me some tissues. That’s when I realized that I was crying.
The smell of the tissues reminded me of my grandmother. My mother’s mother, who also had Alzheimer’s. My grandmother had fearlessly traveled the world, was in Hanoi when it fell, was always in charge of her business affairs and her church committees and her women’s clubs. But she turned into an angry woman who escaped her caregiver, running out of her home into a Texas winter night, wearing only a thin nightgown. She turned into someone I didn’t recognize, someone who didn’t speak, didn’t even look at me. Someone who lost the ability to care for herself, who was losing the ability to swallow food and drink when she mercifully died from a heart attack.
Shaking my head to clear my grandmother’s story from my mind, I decided that my dad’s story would be different, that I would do whatever it took to keep him from experiencing the kind of decline she did. And I intentionally dismissed the memory of how my mother became haggard and exhausted as she cared for my grandmother, even though my grandmother lived in a nursing home. That, I vowed, would not be either of us.
We left the doctor’s office without being given any concrete advice or even an information sheet about Alzheimer’s. Only a prescription for some medication that Dr. Hales suggested might help, at least for a while, and a direction to return in six months.
We returned to the parking lot as I struggled to hold back my tears. I decided to let my dad lead the conversation, but he asked only where I wanted to go to dinner.
Though I had no appetite, I craved something familiar. I suggested we go to the club where my dad had been a member since I was a young child. Where, like Cheers, everybody knew our name.
As we drove toward the club, I realized that I would need to learn about this unwelcoming future awaiting my dad. I wanted no part of it: not the disease, not the learning about it, not the living through it. We were hurtling forward into something neither of us had expected.
But we had no choice.
Looking back, I want to wrap my arms around the me who swallowed tears that evening along with dinner and offer some comfort. Yes, the future feels grim. As afraid as you are now, you’re also naive. You have no idea of what’s coming—the joy or the pain. Yes, that’s true.
Yes, as hard as it is to accept, dementia will take the man who’s always been your bedrock.
Yes, despite it all, you will survive.
Author: Julie Fleming
Julie provided love & care for her father, who was diagnosed with Alzheimer's Disease in the fall of 2011 and with vascular dementia in 2014, until he died in 2017. And she had to learn it all the hard way. Sound familiar?
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