The change became apparent to me one morning when I got into my car and realized I didn’t know how to get to my dentist’s office. I had been his patient for years, but at that moment my memory was blank. I couldn’t even remember his name.
What on earth was wrong with me?
Months later, a neurologist answered my question: “Cognitive dementia.”
That was more than two years ago when I joined a large and rapidly growing number of people who experience a decline in memory and thinking skills severe enough to alter their lives. The journey has made me laugh and cry, and taken me to a few heartbreaking destinations.
My condition has progressed some since then, and I know I won’t be able to write this column forever, but meanwhile I am hoping to help others better understand what it’s like to have dementia — to be confused and slowly lose your memory — or to be around someone with the affliction. I will share my experiences, and yours, in hopes of creating a conversation exploring all aspects of this disease that strikes one of every nine Americans over 65.
I made it to the dentist that day, but the experience touched off a series of doctor visits, tests, questions without answers, and emotions that are now a part of my life. How quickly will the symptoms progress? I asked my neurologist. Unknown. Will I become like his patients with vacant eyes waiting in the reception room with their spouses, who need to remember anything of importance from the visit? Unknown. Will medication help? Unknown. Is there a cure? No.
About 80 percent of people with dementia develop Alzheimer’s disease, a particularly insidious form of dementia that leads to death. I am in the early stages of dementia, and they tell me my tests currently clear me of Alzheimer’s, so my experiences have been far less scary by comparison to many others’. My prognosis is for continued regression with no reversal. Otherwise, I am a healthy and physically active guy rapidly approaching 70 and generally enjoying retirement along with my wife of 49 years.
These days, if activities aren’t routine, or familiar to me, difficulties often arise. For example, when my local grocery store installed new self-checkout machines I found myself holding up a line of shoppers while I was dumbstruck, unable to figure out how to proceed. For the life of me, I couldn’t concentrate or begin to understand how to start the process.
“Sorry,” I told the next person in line, a man with two youngsters in tow.
“No problem,” he said, walking forward. “They must be new machines.” He paused momentarily, pushed a couple of buttons, and the checkout routine began. “There you go,” he said, returning to the line.
My confusion ran deep before I was rescued. To anyone watching, it was no big deal. To me, it was slightly humiliating.
The Alzheimer’s Association estimates that a dementia diagnosis occurs every 66 seconds in the U.S. and that one in three seniors dies with the illness. The National Institutes of Health spend $480 million annually on dementia research, and there is hope of one day ending the epidemic. Meanwhile, the estimated annual worldwide cost of the disease is $600 billion.
When first diagnosed, I only told my immediate family and a couple of close friends. I was somewhat embarrassed by my condition, and was concerned about how the news might change the way people viewed me and related to me. I didn’t want to be the source of pity. But as time passed, I decided I had nothing to hide so I started telling others, often using my illness as an honest excuse for forgetting something or becoming perplexed.
Friends have been loving, supportive and helpful. But sometimes, when they remind me of things they think I might have forgotten, their good intentions create a depressing reminder for me about a condition I am mostly trying to ignore.
Friends also try to comfort me by saying that some memory lapses I describe happen to them sometimes, too. I appreciate it, but my neurologist, as well as the part of my mind still functioning, tells me there’s a difference.
What has really been gnawing at me is not wanting to talk about it. By writing this column, that all changes.
Sometimes I lose the ability to think clearly, and that is frightening. Confusion. Forgetfulness. Being befuddled by changes. Losing my way. Shedding tears when I see a photo of my daughter kissing my cheek on her joyful wedding day I can no longer recall.
These things have invaded my life. My hope is that we will share our experiences in future columns and that, together, we can foster a wider, deeper understanding of the challenges created by the insidious disease called dementia.
Kent Pollock is a retired journalist, journalism professor and the former editor of the Anchorage Daily News. Please share your perspectives, insights and comments with him at firstname.lastname@example.org.