Into the night

Like many people who are diagnosed with early-onset Alzheimer’s, I really had no idea what to expect. Would I be just a shadow of my former self within a couple of years, reduced to struggle with the most menial tasks? In calmer moments, I would recall that I had been living with the symptoms of the disease as early as the spring of 2012, almost three years before I received my diagnosis. Soon after, I learned of Greg O’Brien and his book On Pluto: Inside the Mind of Alzheimer’s. For me, the book’s timing was perfect. Like O’Brien, I am a former journalist, and we both know how to tell a story.

But one element of O’Brien’s story has dismayed me: his rage. At first, I thought his anger was just part of his personality, and having Alzheimer’s caused him to lose his cool more often. Growing up, I often lost my temper, a trait that descended from my grandmother and mother. Outside of my family, I rarely blew my top, but there were exceptions. Playing in a Babe Ruth League tournament in Camas, Washington, at age fifteen, not far from the Columbia River, I threw a tantrum in front of at least 100 spectators, almost all of whom were hostile to me and my team. The flashpoint came when I was at bat. The pitcher was right-handed, and his pitch was a curveball, high and inside. As I curled away reflexively, the pitch struck my shoulder. I assumed the call would be “hit by pitch.” But the hometown umpire ruled that I swung at the pitch for, strike three. Then I exploded. Before my coach could restrain me, I wheeled around and gave the hostile crowd the finger. This, of course, was a case of pouring gasoline on the fire. But that episode was singular. Once I got past my sophomore year of high school, my temper moderated.

 That’s not to say that these days I am a mellow personality. But major outbursts have been infrequent during the five-plus years since I first noticed a decline in my short-term memory. The first major blow-up occurred in the summer of 2014, about a year ahead of my diagnosis. I was driving to Winchester, Massachusetts, about a six-mile drive from our home in Somerville. Our destination was a swimming pond, where we had a membership. The topic of the argument, oddly, was laundry. We live in a two-unit condominium, and our downstairs neighbors share the washing machine and dryer with us in the building’s basement. We store our dirty laundry in a closet in the master bedroom. We do the laundry twice a week, Sundays and Wednesdays, and we separate the clothes into colors and whites. For the first eighteen years in our home, the process went smoothly.

But then Alzheimer’s entered the equation. The result was that Paula and I had a fierce argument about laundry. I complained that Paula’s system was too complex, like something Franz Kafka might have conjured up. The real problem in the system was my cognitive decline. Our dirty laundry resides in our master bedroom’ closet, three flights above our laundry facilities. Sometimes, by the time I reach the basement, I have forgotten Paula’s directive. Take the dried clothes out the dryer? Simple enough. Use the correct amount of detergent? We only need a concentrated teaspoon. But some garments are more delicate than other garments. Dark fabrics must be separated from whites. My teenage daughter much prefers soft hand towels to stiff hand towels.

A more recent blow-up took place in September 2016, when I was organizing a trip to the Northwest with my adult son. Paula and I argued about whether he and I should rent a car once we were on the ground in the Northwest. My argument was that I knew the roads and highways of my home state very well, and there is less traffic in northwest Washington. Paula’s concern was that I might damage the rental car, boosting our insurance rates. Paula and I got into a shouting match about the issue on the way to our support group meeting at the Alzheimer’s Association, and we had to pull over until I calmed down. Within a matter of weeks, after talking to my doctor, I voluntarily turned in my driving license, with no deep regrets. I hadn’t had an accident since 1984, and I wanted to keep it that way. And in the dense community I inhabit, I can do most of my errands on foot or by bicycle.

This, after all, is the prologue to Greg O’Brien’s forbidding article that might be titled, “The person with Alzheimer’s tale.” Here is what O’Brien has to report from the middle stage of Alzheimer’s three stages. Channeling the mid-twentieth-century poet Dylan Thomas, most known for his poem “Do not go gentle into that good night,” here is what O’Brien has to say about Alzheimer’s and rage, particularly “sundowning: “The darkness can … be a time of great confusion” as “sundowning”—increased agitation, often in the late afternoon and evening—takes hold. As O’Brien notes, “This also occurs often when neurons are not connecting properly, and those of us in the disease lash out unexpectedly, often far outside the traits of our personalities—cursing, screaming, hurling insults, even throwing objects without warning, like cellphones, utensils, shoes and other things, as I have. Those of us on this journey are not stupid, callous, uncaring, or intentionally unhinged: We just have a disease we can’t control. Such behavior can be initiated by loud, throbbing noises, penetrating confusion, excruciating stress, primal fear, cerebral numbness, paranoia, or all of the above.”

Well said, Greg O’Brien. And let me thank you for serving as my Dante to your Virgil. But where do I go from here, once I myself has reached the disease’s unwelcome middle stage?

To read O’Brien’s article in its entirety, do a search for “Greg O’Brien rage.”