Aging and Social Change’s Updates

What Alzheimer’s Feels Like from the Inside

Nautilus | Article Link | by Greg O'Brien

Image courtesy of Unsplash

I was up again at 4 a.m. the other night, one of five nocturnal ramblings in the early morning, the new me. No sleep. Picking my way in the dark, familiar territory of a home on Cape Cod where I have lived with my family for 34 years.

I fumbled into the bathroom as I felt the numbness creep up the back of my neck like a penetrating fog, slowly inching to the front of my mind. It was as if a light in my brain had been shut off. I was overcome by the darkness of not knowing where I was and who I was. So I reached for my cellphone that substitutes as a flashlight, and called the house. My wife, deep asleep in our bed just 20 feet away, rose like Lazarus from the grave to grab the phone in angst, fearing a car crash with one of the kids or the death of an extended family member.

It was me, just me. I was lost in the bathroom.

I was diagnosed in 2009 with early-onset Alzheimer’s, after Alzheimer’s stole my maternal grandfather and my mother, and several years before my paternal uncle died of Alzheimer’s. Clinical tests, MRIs and a brain scan confirmed my diagnosis. I also carry the Alzheimer’s marker gene APOE4. Two traumatic head injuries “unmasked” a disease in the making, my doctors tell me.

Today, 60 percent of my short-term memory can be gone in 30 seconds. I often don’t recognize friends, including, on two occasions, my wife. I get lost in familiar places, fly into inexorable rages, put my keys and cellphone in the refrigerator, my laptop in the microwave, and wash business cards in the dishwasher simply because they are dirty.

And at times, I see things that aren’t there. The most disturbing symptoms in my private darkness are the visual misperceptions, the hallucinations—those crawling, spider-and-insect like creatures that crawl along the ceiling regularly at different times of day, sometimes in a platoon, turning at 90 degree angles, then inching a third of the way down the wall before floating toward me. I brush them away, almost in amusement, knowing now that they are not real, yet fearful of the cognitive decline. On a recent morning, I saw a bird in my bedroom circling above me in ever-tighter orbits, before it precipitously dove to the bed in a suicide mission. I screamed. But it was my imagination.