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: 'êShe has early-onset Alzheimer'ês disease.'ê 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'ês Story: Love Lost to the Long Goodbye of Alzheimer's:
'êTogether 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:
'êJan was a beacon of optimism. She was lively and outgoing. I tend towards gloomy and reticent. Whatever happened, she helped me keep my balance.'ê 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'ês.
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: 'êAs 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 'ê¦ it robs us of the moments that might have been."
From the earliest detection of Jan'ês short-term memory loss, 15 years would elapse before her final diagnosis. 'êShe was changing, literally in front of me," Petersen writes. She began losing interest in people, withdrawing from social activities, her normally vibrant demeanor gone. 'êHer confidence and drive to succeed were ebbing away like a quiet midnight tide.'ê
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'ês caregiver. At present 10 million people in the U.S. are unpaid caregivers. By 2050, when Alzheimer'ês 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."
Fortunately, back in this state, Petersen found a live-in caregiver, Diane Malone, a nurse from Tacoma. Malone soon recognized the emotional and physicial toll that caregiving was taking on him. She monitored his blood pressure and was alarmed at his level of exhaustion. "She was also surprised at how quickly Jan was fading," Petersen said in the interview. "The two together meant, for her, it was time to make the move to an assisted-living facility."
Compounding the agony and feelings of guilt of moving Jan to a new home, however, some of Barry's friends criticized his decision. 'êThey said that I was purposely hurting her by moving — some said dumping her — into this facility. In their eyes, I was a man whose actions bore the mark of betrayal."
Reassuring him that moving her was the right choice, Malone said: "You are the caregiver, and no one is looking out for you. You cannot help Jan if you are not here." As Barry Petersen subsequently learned, all the sacrifices he made and the physical demands that caregiving exacted were making little noticeable differences for Jan.
Even after placing Jan in an assisted living facility in Bellevue, he continued to adjust to his new circumstances, always struggling to cope with extreme loneliness. As many caregivers for Alzheimer'ês sufferers discover, visiting their loved ones is both agonizing and difficult. 'êThe Disease makes no space for closure, no moment of knowing that life is over."
On each visit, he saw Jan faltering, and his grief seemed to know no end. "A friend calls grieving like saying goodbye by going to the same funeral over and over again," Petersen writes. In one of the more heart-rending moments in his book, Petersen recalls a time that Jan walked over to him, leaned down, focusing on his eyes, and said, 'êDon't forget me."
Yet soon he found solace in the support of friends and reaching out. As he learned from an old friend: "We don't get to choose regarding the losses (in life) 'ê¦ but we do get to choose, if we're lucky, how we handle the aftermath of the grief."
With Jan now safely in her new assisted living facility, and the day-to-day pressures of his life as a caregiver greatly lessened, Petersen had to struggle with the reality of moving forward with his life. One of the decisions he faced was the agonizing choice of whether to find a new relationship. "There was a loud nagging voice inside me," he writes. "Could I allow anyone else in my life besides Jan?"
Petersen eventually met Mary Nell, a widow who lost her husband of 22 years in an accident. "This is truly a case of having to walk in someone's shoes before you make a judgment about how you would react and respond in similar circumstances," she said in a CBS "Sunday Morning" story Petersen narrated in June.
'êThe reality is I am a widow. The reality is that he is married to a woman that doesn't remember him. And so we exist in our own universe of this very peculiar new American family,'ê she added. Both live in Denver now and have moved Jan there to be closer to Jan's step-daughters and step-granddaughter.
More and more, stories such as the Petersens' are becoming a fact of life. Alzheimer'ês afflicts an estimated 5.3 million Americans and is now the fifth leading cause of death in the United States. In recent years, a growing percentage are those diagnosed who are under 65 and have early-onset Alzheimer'ês disease.
Even more sobering is the fact that while deaths from heart disease, breast cancer and stroke are all down (2002 to 2006), Alzheimer'ês-related deaths have risen by almost 50 percent.
Asked what lessons he would impart to caregivers, Petersen had this to say: "It is a lonely, exhausting journey that shrinks your life as it goes on because the needs of the person increase. Be forewarned not to do this alone. Reach out to other people on the same journey, as I did, who can share their experience and share some of your pain."
Jan'ês Story was especially moving for me as my own wife, Linda, was diagnosed with early-onset Alzheimer'ês disease in 2005 at the age of 56. As a caregiver who has faced many of the same challenges, I highly recommend Petersen'ês book to any and all seeking a better understanding of this devastating disease. Jan'ês Story is a profile of love and courage, two qualities that will inspire all who read it.
For more information about early-onset Alzheimer'ês, see www.alzwa.org. Note: Petersen is donating 10 percent of all royalties from his book to the Alzheimer'ês Association.