Living With Alzheimer’s
“As I look back over a misspent youth, I find myself more and more convinced that I had more fun doing news reporting than any other enterprise. It really is the life of kings.”
A scribe is nothing without good notes. For years I’ve taken detailed notes as an embedded reporter inside the mind of Alzheimer’s, chronicling the progression of this monster disease. Ever since I knew that something was terribly wrong after a serious head injury had “unmasked” a disease in the making, my reporting instincts compelled me to document, to compile a blueprint of strategies, faith, and humor, a day-to-day focus on living with Alzheimer’s, not dying with it—a hope that all is not lost when it appears to be.
Death comes to all. While in the natural, we have little rule over time and place, we can choose the attitude as we head through the tunnel to a brighter light. As Leonardo DaVinci observed in the 15th century: “While I thought that I was learning how to live, I have been learning how to die.” Aren’t we all, if we lift the thin veil of denial?
So, we press on in the shadows of role models. One of the most inspiring to me is a man called “Sweetness.” He taught us legions on the gridiron about perseverance. The late Hall of Fame Chicago Bears legend, Walter Payton, nine times an All Pro, was one of the most prolific running backs in NFL history; he died too young at age 45 of cancer. Toward the end of his extraordinary career, a sports commentator declared on air in full reverence: “Walter Payton has run for more than nine miles!” To which his co-anchor replied intuitively, “Yes, and Payton did that getting knocked down every 4.6 yards, and getting back up again!”
If anyone has true grit in the fight against Alzheimer’s, it is Glen Campbell. Diagnosed with the disease in 2011, he refused to retreat, courageously relying on his muscle memory as one of the nation’s greatest songwriters and country and pop singers, teaching the rest of us along the way how to shine when the stage lights go dark. Campbell, while he could recall lyrics, launched his “Goodbye Tour” with three of his children joining him in his backup band. Sadly, in April 2014, it was reported that Campbell, at 78 still a man for all seasons in his inner soul, had become a patient at a long-term care facility.
Campbell was a lamppost to me earlier in life. I was drawn to his music on cross-country trips from New York to the University of Arizona where I attended school; his sweet, often raw and throaty voice, resonating from an eight-track tape cartridge, offered the verve to keep me focused and driving in my yellow Opel Kadett. His example today still keeps me focused and driving.
On these treks, I memorized almost every word of Campbell’s Greatest Hits, produced in 1971, never forgetting to play repeatedly: “Wichita Lineman” as I crossed Kansas; “By the Time I Get To Phoenix,” as I drove through the Petrified Forest in remote northeastern Arizona, often at 2 am with moonlight glistening off the semi-desert shrub steppes and colorful badlands; and “Gentle On My Mind” as I passed the graceful Santa Catalina Mountains, rising from the valley on the outskirts of Tucson. I can hear his voice now.
Award-winning filmmakers James Keach and Trevor Albert have eloquently captured the marvel of Campbell’s music, his love of family, and his battle with Alzheimer’s in a distinguished documentary, Glen Campbell . . . I’ll be me. For anyone seeking to understand the journey of Alzheimer’s and the endless solitary struggle of those afflicted “to be me,” this Keach/Albert documentary is required viewing; it is edifying to the point of boundless wisdom. Campbell is a “Rocky with a guitar,” Keach has said.
And then there’s Pat Summitt, the legendary retired coach of the Tennessee women’s basketball team, who told the Knoxville News Sentinel after announcing her diagnosis of earlyonset Alzheimer’s: “There’s not going to be any pity party, and I’ll make sure of that . . . Obviously, I realize I may have some limitations with this condition since there will be some good days and some bad days.”
And so it is with chronic illness, good days and bad days. You get knocked down, you get back up. Again and again. You find a way to win—as New England Patriots Coach Bill Belichick would insist—on the playing field, on the job, in the home, or in a fight against cancer, heart disease, AIDS, Parkinson’s, autism, depression, diabetes, dementia, or any number of vile illnesses. Lying down in football, as it is in wrestling, is a position of defeat. That’s not a good place for any of us. As a famed billboard on Boston’s Southeast Expressway proclaimed in the early ’70s about Boston Bruin premier center Phil Esposito: “Jesus Saves. But Esposito scores on the rebound!”
My place today is with the disease early-onset Alzheimer’s; it’s a death in slow motion. A freeze frame at times. Alzheimer’s and its predecessor, hardening of the arteries, stole my maternal grandfather, then my mother. And now it’s coming for me.
Doctors tell me I’m working off a “cognitive reserve,” a backup tank of inherited intellect that will carry me in cycles for years to come. They tell me to slow down, conserve the tank. It’s lights out, they warn, when the tank goes dry, just as it was for my mother. In laymen’s terms, the “right side” of my brain—the creative, sweet spot—is intact, for the most part, although the writing and communication process now takes exponentially longer. The left side, the area of the brain reserved for executive functions, judgment, balance, continence, short-term memory, financial analysis, and recognition of friends and colleagues is, at times, in a free fall. Doctors advise that I will likely write and communicate with declining articulation, until the lights dim, but other functions will continue to ebb. Daily exercise and writing are my succor, helping me reboot and reduce confusion. I try to stay locked in, as a missile is on target, but “locked in” likewise is a medical disorder in which an individual who cannot speak because of paralysis communicates through a blink of an eye. Some days, I find myself between definitions—using every available memory device and strategy, cerebral and handheld, to communicate.
All the darkness in the world, my mother taught me, cannot snuff out a single candle. I know that darkness. It’s a place I call “Pluto,” in allegorical terms, a reference from my early days as an investigative reporter when I went deep “off-the-record” with sources. “We’re heading out to Pluto,” I would say, “where no one can see you or can hear what is said.”
The Pluto metaphor still works for me, more than ever, as I seek the peace of isolation and pursue the urge to drift out as Alzheimer’s overcomes at intervals. Pluto is the perfect place to get lost. Formerly, the ninth planet about 3.1 billion miles from Earth, it is now relegated to “dwarf planet” status. Pluto’s orbit, like Alzheimer’s, is chaotic; its tiny size makes it sensitive to immeasurably small particles of the solar system, hard-to-predict factors that will gradually disrupt an orbit. Over the years, I’ve taken close family, colleagues, and clients “out to Pluto” to discuss off-record unmentionables of life in a place without oxygen. One day, like my grandfather and my mother, I won’t return from this dark, icy place; when that happens, I want family and friends to know where I am.
The Irish like to say, “Never get mad, get even.” And so, I’m getting even with Alzheimer’s—not for me, but for my children, for you and your children, and for a generation of Baby Boomers, their families and loved ones, who face this demon prowling like Abaddon.
On Pluto: Inside the Mind of Alzheimer’s is not a pity party or a misery memoir. It is an insider’s guide, a generational road map of how to battle this cunning killer for as long as possible. To fight an enemy, one must study the enemy, and have working strategies in place. As the great ancient Chinese General Sun Tzu, assumed author of The Art of War, once counseled, “Tactics without strategy is the noise before defeat.”
There is plenty of noise on the Alzheimer’s front today, much defeat, and hardly enough funding for a cure. Not even close.
Alzheimer’s, named for Dr. Aloysius “Alois” Alzheimer, who in 1906 first identified amyloid plaques and neurofibrillary tangles that rob the brain of identity, is the most common form of dementia—an umbrella term for irreversible cognitive collapse. Alzheimer’s progresses slowly in stages, slaying neurons in the brain. The early stage is marked with increasing impairment of learning and short-term memory with some language challenges. The moderate stage is a progressive deterioration that leads to incapacity to perform certain common daily functions: short-term memory worsens, filter is lost, rage is intense, inability at times to recognize familiar places and people; some urinary and bowel incontinence; and at times, “illusionary misidentifications,” which the layman, less politely, would term hallucinations.
I’ve entered the moderate stage, doctors say, but there is plenty of baseball left to play. The advanced stage—the stereotypical perception of Alzheimer’s—is characterized by wandering and a complete shutdown of cognitive and body functions. Collectively, this slow demise can take up to 20 years or more once it’s been diagnosed, and can begin ten or 15 years before diagnosis. With some, the progression, for reasons unknown, is far quicker.
This is not your grandfather’s disease; it is fast becoming a disease of the young or young at heart. It’s been said that Alzheimer’s is like having a thin sliver of your brain shaved off every day.
Stephen King couldn’t have devised a better plot.
Should you be frightened if you frequently forget where you put your keys? Maybe it’s nothing, perhaps a “senior moment,” or maybe it is the start of something. There is a clear distinction between forgetting where you parked your car and forgetting what your car looks like; forgetting where you put your glasses, and forgetting that you have glasses; getting lost on familiar roads because you’ve been daydreaming, and getting lost because your brain’s capacity to store information is greatly diminished.
The numbers don’t lie. They are numbing, and may be working against you, as the world’s population grays. It’s been said that, in 25 years, there will be two kinds of people in the world: those with Alzheimer’s and those caring for someone with the disease. Consider this:*
- Alzheimer’s is the sixth leading cause of death in the United States and the only such disease on the rise. More than five million Americans have been diagnosed today with Alzheimer’s or a related dementia and about 35 million people worldwide.
- In the next 36 years, just half a generation from now, the number of individuals in the U.S. age 65 and older with Alzheimer’s disease is anticipated to nearly triple to a projected 16 million, barring any medical breakthrough to prevent, slow, or stop the disease. Worldwide, by 2050, about 135 million are expected to have some form of dementia.
- In the next 15 years, Alzheimer’s is expected to exceed cancer and heart disease sevenfold, and without a cure, it will bankrupt Medicare. Soaring healthcare costs for long-term care and hospice for people with Alzheimer’s and other dementias are projected to increase from $203 billion in 2013 to $1.1 trillion in 2050.
On Pluto: Inside the Mind of Alzheimer’s is a story that might be yours one day, or the story of a close friend or loved one; please don’t assume it won’t. Some of the language within is raw, full of rage, but real in its pain and fear. We can all learn from Irish playwright George Bernard Shaw, who prophetically observed, “Life is no brief candle . . . It is a sort of splendid torch, which I’ve got hold of for the moment, and I want to make it burn as brightly as possible before handing it to future generations.”
All of us can assist future generations in the hand-off of a cure for Alzheimer’s, with a greater collective understanding of the disease, more resources, and a worldwide commitment to find a cure. My hope is that we all listen more. A pebble tossed into a placid pond ripples far more than in roiling waters. In the pages to follow, I offer a front-row seat into the mysteries of this disease, an out-of-body experience on a trajectory to Pluto. To understand this disease, one must step outside to see inside.
*Alzheimer’s Association Alzheimer’s Disease Facts and Figures.
Accessed December 15, 2013. http://www.alz.org/alzheimers_disease_facts_and_fgures.asp