It was during a warm summer weekend in Tokyo in 2005 when Barry Petersen first noticed that something was terribly wrong. The warning signs were not immediately evident. His wife, Jan, 55, was healthy and in excellent physical condition, a talented broadcast journalist with CNN, ABC, and CBS News.
Jan tried to cook hamburgers, he recalled. She used a deep pot as a frying pan and turned up the stove to maximum heat. Her sentences were jumbled. Then, she started having hallucinations and often looked at him with a long intense stare.
Worried, he phoned a neurologist in San Francisco at 4 a.m. one morning. After describing the symptoms to the doctor, Petersen finally heard the heart-breaking words: “She has early-onset Alzheimer’s disease.” Thus began a tortuous journey for a couple in the prime of their lives. As Petersen, an award-winning CBS News correspondent, recalls in his new book, Jan’s Story: Love Lost to the Long Goodbye of Alzheimer's:
“Together we built a life, made friends, hunted for treasures in antique stores, traveled, and loved the new experiences. Our lives made sense. And then with the coming of The Disease, all of that was taken away and in its place was unpredictability, and loss."
As is often the case with early-onset Alzheimer's, outwardly Jan seemed normal, lived an active life, was a voracious reader, and always upbeat and vivacious. Ironically, she came from a family many of whose members lived beyond ninety. As Petersen described her in a recent interview with Crosscut:
“Jan was a beacon of optimism. She was lively and outgoing. I tend towards gloomy and reticent. Whatever happened, she helped me keep my balance.” Both met in Seattle when Jan Chorlton was a KIRO-TV news anchor. Shortly after their initial encounter, both fell in love and were married in 1985. Twenty years later, she would be diagnosed with Alzheimer’s.
The Petersens lived an exciting, globetrotting life together, as Barry was posted in Tokyo, Beijing, London, and Moscow covering such far-flung assignments as Iraq, Sarajevo during the Bosnian war, the Rwanda genocide and refugee crisis in the Democratic Republic of Congo, and the Tiananmen Square massacre in Beijing. Jan was a radio stringer for CBS News. Despite his frequent, sometimes lengthy absences, however, both found time to enjoy their lives overseas.
In retrospect, Petersen laments the fact that he didn't notice the signs of short-term memory loss earlier: “As time went by, denial was a much crafted, much practiced art for us both. The symptoms were piling up," he writes. "That is what denial does … it robs us of the moments that might have been."
From the earliest detection of Jan’s short-term memory loss, 15 years would elapse before her final diagnosis. “She was changing, literally in front of me," Petersen writes. She began losing interest in people, withdrawing from social activities, her normally vibrant demeanor gone. “Her confidence and drive to succeed were ebbing away like a quiet midnight tide.”
Thrust into the exhausting role of 24/7 caregiver, Petersen began to face the crush of work and caregiving, often finding the balance mind numbing and depleting. As he slowly began to learn, there is no training or manual for the Alzheimer’s caregiver. At present 10 million people in the U.S. are unpaid caregivers. By 2050, when Alzheimer’s Disease sufferers triple to a projected 16 million, that number will hit 32 million.
Barry wasn't able to focus at work, often experiencing uncontrollable rage, while coping with anxiety, depression, and sleeplessness. "I was simply exhausted," he writes, and constantly on "red alert." "It was a treadmill. I was on emotional overload."
As Petersen eventually realized, caregiving can be a life-threatening endeavor. Chronic stress can shorten caregivers' lives. Indeed, studies have shown that caregivers between 66 to 96 years old have a 63 percent higher mortality. "Caregiving for a loved one can kill you," Petersen writes, "and caregivers often die before the person with Alzheimer's."
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