On Pluto (3 page)

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
^λ
:

  
•
  
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

A
CKNOWLEDGMENTS

O
n 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 Rudnick; 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 P
LACE OF
R
ECALL

T
HE 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.