Winds of Change: Inside the Mind of Alzheimer’s

The winds of change were swirling Easter Sunday for Steve Johanson, but there was to be no rising up from the grave; yet death, where is thy sting when passing from Alzheimer’s to the Promised Land.

(from left) Judy and Steve Johanson and Greg and Mary Catherine O’Brien

Source: Johanson Family

My close friend Steve, a man of great faith in a shared passage battling the demon Alzheimer’s, passed peacefully at 12:20 am Easter Monday in a Wellesley nursing home outside Boston after a bruising bout, a “No Más” final round, then a serene handoff from the mind to the soul.

Winds of change carried Steve to new heights from a midnight embrace with his wife Judy to the freeing of paradise where there are no tears, only for those left behind.Wrote Steve, an avid sailor, years ago: “When the wind shifts, you don’t give up. Adjust your sail, and chart a new course.”

So, Steve adjusted the course when diagnosed with Early Onset Alzheimer’s in 2011 at age 59.   Sharing the tiller with selfless love and support from his caregiving wife Judy, the couple put retirement plans on hold with storm clouds massing on the horizon and morphed into one—Judy becoming her husband’s compass; Steve, her ballast. Alzheimer’s is a family disease, one in which the caregiver, the heroes of this disease, must maneuver through the fog, attempting to avoid the flotsam and jetsam of the killer in waiting.

“Steve is now free of the chains,” said Judy. “He carried them with grace.” 

Steve’s road to peace was circuitous, a path all too similar to those of us on this journey. Steve just had more good in him, teaching us all how to live with Alzheimer’s in faith, hope and humor. A dedicated family man with a daughter Carly, son Luke, and three adoring grandchildren, Steve never complained, never felt sorry for himself. He just altered his course, breaking the stereotype of this horrific disease that sadly affects women, blacks and Hispanics in far higher numbers. But when one passes in Alzheimer’s, we all die a bit. Alzheimer’s respects no demographic, no gender, no color or ethnic background, no political or spiritual beliefs. It is a bipartisan killer. While Alzheimer’s now is officially the sixth leading cause of death in the United States, and the only major disease for which there is no cure, recent studies indicate Alzheimer’s and related dementia‘s may rank third behind heart disease and cancer, swiftly gaining on the two. Many of those in this disease, die of pneumonia, strokes and other causes, as the mind—the control panel—breaks the body down.  

Please don’t be fooled by inaccurate pigeonholes of the disease. Alzheimer’s is not just the end stage when one is unaware of self; the disease can take 25 years to run its course, with brain pathology starting in one’s 40s without detectable symptoms. There are millions of individuals today living with Alzheimer’s in the early stages, perhaps sitting next to you at work, in your pews at church, at your stores and restaurants, still highly functioning, maybe not even diagnosed yet, who daily are fighting off dreadful symptoms, often outside the view of others. Then, without notice, the disease takes us down—dramatically diminishing, more and more, our ability to function. The daily battle against Alzheimer’s and other forms of dementia is like the classic nightmare when one is desperately trying to outrun a monster. While sprinting in this terrifying chase can work for several laps, slowly the monster overtakes, then pounces, as one becomes frozen in time. That’s the chilling fear of this disease that attacks at will both genetically and at random.

The demon pounced for Steve before first light on Easter Monday; ironically, his mother Claire, who also battles Alzheimer’s, has outlived him on the front line. I know the frontline well. Alzheimer’s stole my maternal grandfather, my mother, and my paternal uncle, and before my father’s death, he was diagnosed with dementia, among other conditions such as prostate cancer, circulation disease/numbness of the limbs, and macular degeneration—all of which I’ve inherited. At age 59, like Steve, I, too, was diagnosed with Early Onset Alzheimer’s, and carry the Alzheimer’s marker gene. In the past few months, I’ve lost four close friends to Alzheimer’s and other dementias that threaten to decimate the Baby Boom Generation and generations to come. In the throes of deep depression, knowing where this disease ultimately will lead me, I’ve tried twice taking my life, and failed miserably at it. Steve, as his symptoms progressed, brought me up short as we discussed this one day, glowering down at my smaller frame. “You’re far better than that,” he said.

I won’t take the third strike.

Steve—who lived in Watertown, Ma., two blocks from where police in April 2013 captured one of the Boston Marathon bombers during a neighborhood lock down and gunfire that echoed throughout his house two years after his diagnosis—is a role model in his mettle.

“Steve was a gentle giant of a man,” said Mike Belleville, who was diagnosed with Alzheimer’s years ago in his early 50s. “Steve was a mentor to me. I was in a dark place, and Steve pulled me out with his great courage and wisdom.”

Half-Swede, half Irish, born in the gritty, street-smart Boston neighborhood of Jamaica Plain, one of four boys, Steve was as much a handyman as he was an artist, a poet, and lover of nature, a renaissance man. A retired construction project manager at Boston’s Northeastern University, Steve, was a handsome dude at six foot two, 190 pounds, broad shoulders, a narrow waist, an Irish Viking that turned heads. In his journey, he still turned heads, but for other reasons. He loved life, and focused his energies, along with his wife and family members, to assisting the Massachusetts/New Hampshire chapter of the Alzheimer’s Association, and pressing on with gut resolve, embracing the simplicities of life.

Years before his diagnosis, Steve wrote, “I have a small bank account; my car is not fully paid for; I can’t seem to catch up on payments to my charge cards; the kids want cable TV. With all the aggravations and real problems of our lives, I love my life. …I love my wife, my family, and all children. I love growing, changing, and learning new things. I love love!”

These words were read at his funeral at St. Joseph’s Catholic Church outside Boston, along with a passage he wrote after his diagnosis, one still filled with hope and love: “I don’t think I’ll be at this desk much longer. Trying now to build a positive vision for the future. As a construction manager and a carpenter, I’ve always been able to put the pieces together to build beautiful, safe places for my family and friends. I suspect my tools will lay unused and layered with ever-deepening layers of dust. …But on a positive note, I know my loved ones will pull me up from inaction, dust me off again, and take me out for fresh air, nature’s beauty, and the hugs we will all need at some time in the future.”

The winds of change started blowing stiffer months ago as progressions in this disease continued, and horrifying reactions to Alzheimer’s medications landed Steve in the hospital after striking out defensively in confusion—the incredible, over-the-top rage of Alzheimer’s that many of us walk through. Underscoring a widespread unawareness of dementia, medical centers are often ill-prepared to respond to dementia patients, as noted in a recent detailed front page Boston Globe piece written by Felice Freyer. “The hospital stay to adjust Steve’s Alzheimer’s medication was a nightmare,” Freyer reported. “In the emergency room, nurses briskly took his vital signs, oblivious to his condition. When he became upset, the staff didn’t seem to understand why.”

“I felt like we were aliens,” Judy Johanson told the Globe, preferring not to name the hospital, “We had just landed in a place that had no idea of the language we spoke, and no concept of the disease my husband had.”

Ultimately, the Johansons, Judy said, were moved to an isolated area of the hospital where Steve, still striking out defensively, had his wrists tied to the bed rails above his head, until Judy demanded they be removed. It was a scene reminiscent of the film, One Flew Over the Cuckoo’s Nest.

By the end of Steve’s hospital stay, Judy said, her husband had lost his ability to walk, could not return home, and was taken to a nursing home where his downward descent continued. The demons were waiting in the shadows to pounce days before Easter, as Steve’s breathing and vital signs diminished and doctors administered oxygen and morphine to ease the pain and allow Steve to let go.

Easter Sunday was a heartbreaking goodbye for the Johanson family gathered around Steve’s bed. Judy stayed with her husband that night, lying next to him in bed, knowing the end was near.

“I told Steve that I would feel him in the wind, and see him in his grandchildren,” Judy told me, noting she had read Steve the lyrics of their impressive musician son Luke’s song, Winds of Change, written four weeks before Steve’s death.

The last verse was the farewell:

“And them winds of change blowing down his door

“Where all those aches and pains can be no more

“And he’s gonna fly, there will be no fear

“With freedom found these darkest years

“So break lose them chains, and head out that door

“Let them winds of change spread your wings and soar”

And with that Steve, who left behind a legacy in this disease for all to follow, soared to his promised land on the winds of change.

Postscript: the late Steve Johanson, who had volunteered for clinical trials in Boston in efforts to find a cure for Alzheimer’s, donated his brain to Massachusetts General Hospital for research. To learn more about clinical trials, visit the Alzheimer’s Association website and the UsAgainstAlzheimer’s website.  The Johanson family, grandchildren included, has been instrumental in working closely with the Massachusetts/New Hampshire chapter of the Alzheimer’s Association. In addition to frequent speaking engagements, Judy Johanson proposed the concept of a thin purple string tied to the wrist, as a reminder that no one is alone in this disease. “A few years into Steve’s diagnosis, I was watching “It’s A Wonderful Life, “and was struck by the scene in which ‘Uncle Billy’ tied a string to his finger to help him remember,” she says. “I began thinking that Uncle Billy may have had Alzheimer’s. So, I started urging family and friends to wear a thin purple string around their wrists for remembrance of a wonderful life.”

All attending Steve’s funeral were given purple strings with a card notation that read, “Please wear this thread on your wrist to remember that we are all tied together through Steve and the fight to end Alzheimer’s.” The notation included a quote from Steve: “Embrace life with joy and wonder, live each moment with faith and peace.”

Greg O’Brien’s book, “On Pluto: Inside the Mind of Alzheimer’s,” won the 2015 Beverly Hills International Book Award for Medicine, the 2015 International Book Award for Health, and was an Eric Hoffer International Book Award finalist, as well as a finalist for USA Best Book Awards. An expanded edition of On Pluto, New Horizons, has just been released. O’Brien also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR’s “All Things Considered” has run a series about O’Brien’s journey, and PBS/NOVA followed the Pluto journey in its groundbreaking Alzheimer’s documentary, “Can Alzheimer’s Be Stopped,” among other regional and national interviews. O’Brien has served on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, is a patient advocate for the Cure Alzheimer’s Fund of Boston, and a board member of the distinguished Washington, DC based UsAgainstAlzheimer’s.

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