by Greg O'Brien
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.
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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 thisλ:
•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.
λ Alzheimer’s Association Alzheimer’s Disease Facts and Figures.
Accessed December 15, 2013. http://www.alz.org/alzheimers_disease_facts_and_fgures.asp
ACKNOWLEDGMENTS
On Pluto: Inside the Mind of Alzheimer’s has required more than six years of reporting, three years of writing, editing, and revisions, and more than two score of advisors, colleagues, family, and friends. This book would only be a concept without them. First of all, I would like to thank my wife of 37 years, Mary Catherine, and my children: Brendan, Colleen, and Conor, who sustain me and encouraged me to complete this work. Mary Catherine has been my mooring on this project; Brendan my mentor; Colleen my soul, who has opened many doors nationwide in the Alzheimer’s community through her selfless volunteering; and Conor my rudder, keeping me grounded with his Celtic humor.
Secondly, I would like to thank close friend and celebrated author Lisa Genova, whose inspiration, encouragement, and guidance kept me on track, steadied me along the way, and pushed me when I needed to be pushed. Thank you! Her epic novel, Still Alice, has given voice and clarity beyond measure to those with Alzheimer’s. She is a hero to the cause.
I am also grateful for a gifted team of advisors, writers, and editors who steered me along this serpentine path: my ever faithful right hand and director on this project, Alisa Galazzi, former executive director of the Alzheimer’s Services of Cape Cod & the Islands; New York Times best selling authors Anne LeClaire and William Martin; editor Victoria Anderson; my personal physician Dr. Barry Conant, an inspiration to me; retired Providence Journal editorial page editor Robert Whitcomb, a former editor at The Wall Street Journal and International Herald Tribune; documentary producer George Pakenham, Idle Threat; film producer, author, and photographer Chris Seufert; author Ira Wood, founder of Leapfrog Press; Ken Sommer, former CEO of Visa International; Charlie Henderson; Terry and Jan Hoeschler and family; Mike Saint and Steve Shepherd of Saint Consulting; and the support of Sam Lorusso and Dave and Laura Peterson; Robert McGeorge; Ron Rudni
ck; Jim Botsford; Bill, Jonathan, and Betina Todd; Eric and Terri Guichet; Howard Hayes; Rick and Ella Leavitt; editorial advisors George Pakenham; as well as close friends Kristi Tyldesley, Paul and Leslie Durgin, Nancy O’Malley, Martha Hunter Henderson, Pam Hait, Mark Forest, Traci Longa; Scott Farmelant; and my nephew Kenny McGeorge for his soulful, never-say-die inspiration in his daily battle against advanced autism, a life lesson for me. Kenny keeps me fighting.
My sincere thanks also to close friends Ralph Branca, Patti Branca, and Mary Valentine; Dan and Kathleen Murphy; U.S. Senator Ed Markey, who has been a champion on Capitol Hill for the cause of Alzheimer’s; Cape Cod Today publisher Walter Brooks; attorneys John Twohig, Jack Eiferman, and Teresa Foley of Goulston & Storrs of Boston, and Duane Landreth, Chris Ward, and Melanie O’Keefe of La Tanzi, Spaulding & Landreth on Cape Cod; author and CNBC television commentator Tom Casey; Ray Artigue, president of the Artigue Agency in Phoenix; Ed Lambert, WXTK-FM; Kevin O’Reilly, president of Creative Strategies & Communications; former Arizona Republic editorial writer Joel Nilsson and investigative reporter Chuck Kelly; writer John Lipman; Cape Cod Times Publisher Peter Meyer and editorial page editor William Mills, and Carol Dumas, editor of The Cape Codder for pressing me to persevere; and Vicky Bijur and Deborah Schneider.
Also, deep appreciation to Robert Kraft and Jonathan Kraft who taught me, through example, to find a way to win.
Much credit goes to legendary documentary director and producer Steve James (Hoop Dreams, Stevie, Interrupters, and Life Itself); New York Times best selling author David Shenk (The Forgetting, Alzheimer’s: Portrait of an Epidemic, The Genius in All of Us, and Data Smog), a former advisor to the President’s Council on Bioethics and a senior advisor to the Cure Alzheimer’s Fund in Boston; and to Julia Pacetti of JMP Verdant Communications in Brooklyn. The Cure Alzheimer’s Fund, in association with the MetLife Foundation, sponsored the production, with David Shenk as executive producer of four short films on the stages of Alzheimer’s (livingwithalz.org), produced by world-class documentary producers. A Place Called Pluto, one of the films documenting my own family’s journey in this disease, was produced by James. The films can be accessed on livingwithalz.org.
In addition, I would like to thank Adam Gamble, publisher of On Cape Publications for his steady direction in the production of this book; his skilled associate and author Mark Jasper; Mark Suchomel and Jeff Tegge of Perseus Books Group for outstanding effort distributing this book; Joe Gallante of Coy’s Brook Studio for his impressive layout and design; and artist/graphic designer Brandy Polay for her stunning cover design. Polay knows firsthand of the struggle with Alzheimer’s; she was a caregiver to her grandmother who died of the disease.
The Alzheimer’s community on Cape Cod and the Islands was instrumental in guiding me and inspiring me along the process; among them: Molly Purdue, PhD, Director of Family Services, Hope Health of Cape Cod; Suzanne Faith, RN psych, Clinical Director, Hope Dementia & Alzheimer’s Services; and Pat Collins, a key Hope Dementia & Alzheimer’s Services associate. Hope Dementia & Alzheimer’s Services of Cape Cod and the Islands (hopedementia.org) has been a lifeline in providing services to me and my family.
Speaking of family, in addition to my mother, I thank my father, Francis Xavier O’Brien, for pushing me, through his own example, to pursue a career in journalism. I thank my brothers and sisters: Maureen, Lauren, Justine, Paul, Bernadette, Tim, Andy, and deceased brothers Gerard and Martin for their love and hope at all celestial levels. I also thank Carl Maresca, Suzanne O’Brien, Peter O’Brien, Scott O’Brien, “Uncle” Mark O’Brien, Stephen and Melina Maresca, Lou McGeorge, Tommy and Barb McGeorge, Jerry Reardon and family, Larry O’Malley, Barbara Anne Newbury, Jeanne O’Brien, Sally O’Brien and family, and David Thompson. Also, I thank my 44 nieces and nephews; it might sound like a Gaelic cult, but family is the core of existence.
Also, special thanks to Ray Hunter; Tom and Kathleen Henze and family; Bob and Gretchen Kelly and family; Buzz Keenan; Buzz Keefe; Greg Keefe; Terry Sachi; Greg McGrath; Paul Hoffman; Brendan Bruder; special friend Marcia Calasio; Lisa Cooper; Terry Stewart; Dave Baby; Marty Hinds; Dave Ernest; Harry and Gena Bonsall; Adria Renke; Scott Burns; Jim Burns; and Tom and Debbie Woods.
Special recognition also to close friend and college buddy Pat Calihan, who died recently of dementia; to his devoted wife, Becky, and all of Pat’s family. Pat, we will never forget you. Promise!
Finally, I thank friends and colleagues for their love and support, in no particular order: Peter, Aaron, and Matt Polhemus, and Francie Joseph; Jess Ritchie; Augusta Hixon; Bobby and Susan Norton; Tom and Peg Ryan; John and Katie Piekarski; Matt Everett; Tim and Maggie Everett; Mark St. John; Billy and Nancy St. John; Tony and Karen Keating; Jimmy and Debbie Dianni; Vinny and Kim Dempsey; Joe and Cathy Lewis of Joe’s Beach Road Bar & Grille in East Orleans for their ongoing support; John Murphy and his family of the Land Ho! in Orleans; the gang at Mahoney’s; close friends and supporters Dick and Nancy Koch; Charlie and Cindy Sumner; Dana and Gayle Conduit; Mark and Anne Ohrenberger; Uncle Cody Morrow, Tim Whelan, and John Terrio; Cape Cod Museum of Natural History Executive Director Bob Dwyer; Anne Saint; Frank Andrews; Pat Fox; Ricky Weeks; Frank and Carolyn Dranginis; Mike Gradone; Mark Mathison; Brian Kavanaugh; Geoff and Rebecca Smith; Vern and Missy Smith; Barry, Nancy, and Kristin Souder; Barbara and Matt Losordo; Pastor Doug Scalise; The Martha’s Vineyard Times editor Doug Cabral; Eileen and Jeff Smith; Paul and Mitzi Daley; Donald and Jack Shea; Bill O’Brien; Joe Penney; Sarah Alger; Wally Steinkrauss; Deb Farr; Tim Mahoney; Dave Taglianetti; Randy Hart; Mike Ford; Jeff Ford; Rob Chamberlain; Steve Boyson; Lynda Walsh; Debbie Stewart; Joanne and Len Hensas; Melissa and Nathaniel Philbrick; Linda Edson; Linda Williams; Nat Lowell; Rick Turer; Barry and Joanne Powers; Sean Summers; producer Trevor Albert, Vicky Bijur, and Deborah Schneider.
In reading this litany beforehand, my brother-in-law Carl joked, “Really! You could have included the Red Chinese and the Bolsheviks.” Well, it takes a village with Alzheimer’s.
In closing, I thank retired U.S. Supreme Court Justice Sandra Day O’Connor, whose husband, John, died of Alzheimer’s. Justice O’Connor instructed me many years ago in the art of court reporting when I was a cub reporter at The Arizona Republic and she was a Maricopa County Superior Court judge. Justice O’Connor has been an enduring inspiration for families battling Alzheimer’s.
Greg O’Brien
1
A PLACE OF RECALL
THE WIND HAS SHIFTED ON CAPE COD. A RUSTED IRON COD on the weathervane at the gable end of the barn is pointing southwest, a warning of foul weather fast approaching from the nor’east. The weathered New England cedar shingles at a precise nine-inch pitch are wet with a fine mist. Near a side door, framed by lobster buoys washed up on the shoreline, a simple white dory window box is filled with colorful perennials. The barn has the feel of a dune shack, a writer’s retreat at the end of a barrier beach—all of it natural, a reflection of the man and his memories snug within.
The door is open, revealing a time capsule of newspaper and magazine clippings, shelves of books, photos of the renowned, the infamous, and other memorabilia. I am innately connected to this man within and to his memories. In his early 60s, he is well kept, the product of running four miles a day; his horn-rimmed glasses and long tufts of graying hair evoke the look of a college professor. He strikes me as a bit of a prick, yet engaging. I know him, yet I can’t relate in the moment. He’s not the person I remember.
“Memory is deceptive, colored by today’s events,” Albert Einstein once observed.
Today’s events are a flash for me, fully an out-of-body encounter, a flood of disconnected synapses, as I discern a flickering picture as if maneuvering rabbit ears on a vintage black-and-white TV, trying to get the focus just right. The human brain, a fragile organ that inaugurates connectivity the first week in utero, contains 100 billion neurons—16 billion times the number of people on Earth—with each neuron igniting more than 10,000 syn
aptic connections to other neurons, totaling more than a trillion connections that store memories. If your brain functioned like a digital video recorder, it could hold more than three million hours of TV shows, enough video storage for 300 years. Not bad for a mass the size of an average head of cabbage, with the encoding, storage, and retrieval capacity to determine, on a good day, how many angels can dance on the head of a pin.
So, why can’t I get a clear picture today? The image is out of focus. When I look through this prism of an altered state, the picture is muddled. I press on for affirmation.
The man is the essence of a Baby Boomer—an over-achiever, an individual of purpose, gregarious, the oldest boy in an Irish Catholic family of ten, a father of three, husband of a virtuous wife for 37 years, the patriarchal uncle to 44 neices and nephews, and a man who always thought, until now, that better days lay ahead. That’s the way it is with Boomers, the invincible generation—sons and daughters of the Greatest Generation whose grandparents endured World War I, and whose parents then survived the Great Depression and World War II, perhaps the last world conflagration until Armageddon. These Boomers, a record 75 million of them born between 1946 and 1964, first played by the rules, then broke the rules, then made new rules. Boomers grew up in a time when we thought shit didn’t happen.
I look to the walls to connect the dots. The writer within grew up in the ’50s, formative years when Einstein was still thinking, Hemingway was still writing, and Sinatra was still crooning. Like all Boomers of the day, the man’s early life reflects history: the long, fading shadow of Franklin Delano Roosevelt; the dropping of hellish atomic bombs on Hiroshima and Nagasaki; the Korean War; the election of presidents Dwight Eisenhower, John F. Kennedy, Lyndon B. Johnson, Richard Nixon, and all the baggage; the apocalyptic Cuban Missile Crisis; the Vietnam War; Woodstock; the birth of free love; and the death of innocence. It was a revolutionary time that spanned perhaps more cultural shifts than any other generation with writers, artists, and musicians who still define this country’s political, secular, and artistic persona.