A Wife’s Diagnosis, A Husband’s Despair: The Reality of Alzheimer’s
Jan’s Story by Barry Petersen, the multiple Emmy-award winning CBS News correspondent, is the heart-wrenching account of his wife Jan’s Early Onset Alzheimer’s Disease. Early Onset AD accounts for about 10 percent of people with Alzheimer’s, with numbers that are expected to swell along with cases of AD as a whole.
As Petersen begins the memoir, “I never intended to write this book. I saved my notes and my ‘Jan Updates’ and the emails people sent me so I could read and remember how Jan was on this day or that…I hope you will understand why my journey could not end with Alzheimer’s taking her away. And if you understand that, you will know why I came to write this. For those caught in this never-ending twilight, perhaps there will be guidance here, if only in knowing you are not alone. I now entrust this chronicle to you. You will read the choices I made driven by every human’s strongest needs…love and survival.”
From the prologue, Petersen defines the toll of AD—what he simply calls “The Disease”—as worse than atrocities he saw while reporting from Sarajevo, Rwanda, Bagdad. Nothing could have prepared him for the loss of the love of his life, particularly with no warning. Readers will appreciated his gifted writing, his honesty about his emotional struggles and the AD insights he shares: “Alzheimer’s has immense patience as it creeps. It oozes with such stealth that some researches now believe it starts twenty to thirty years before the symptoms are obvious enough for diagnosis.”
Though in retrospective Jan’s symptoms started years earlier, she was 55 at the time of her diagnosis. When Barry and Jan first met in the ‘80s, she was a news anchor and producer in Seattle. After they fell in love, she traveled around the world with Barry on assignments for CBS had him all over the globe. They had been dividing their time between Beijing and Tokyo when in 2005 symptoms impossible to ignore started to manifest. One day, after a perfectly typical breakfast, Barry went out to do a news story. When he returned to their apartment in the afternoon, Jan had her first episode: “Jan had walked through the Looking Glass, disappearing into the world of Early Onset Alzheimer’s Disease. She stayed there for three days.” She heard voices, put on street clothes rather than pajamas at bedtime and spoke in sentences with the right words scrambled in the wrong order. A phone call to a neurologist stateside identified the problem immediately, and Barry and Jan’s lives change course forever.
Barry’s book candidly details the at-times rapid changes in Jan’s condition, first moving through hopeful and denial stages, when medication seeks to delay the inevitable course of the disease. He addresses the gamut of emotions that build slowly and steadily, like a pot of water slowly rising to a boil, often not realizing the changes taking place in him as the disease takes more and more of Jan and he takes on the overwhelming responsibility of caregiving. It happens in increments, like the day he realizes that their checking account is growing because Jan hasn’t remembered to pay the rent in three months. Barry eloquently describes what caregivers face as they try to keep their job to support the loved one needing care, maintain a household on their own and see to the loved one’s growing needs. The quickly changing nature of the disease had him endlessly juggling, often trying to cobble together a plan to preserve a life that, deep inside, he knows is moving further and further from his grasp. We are educated by every agonizing decision he makes, moving from hiring daytime caregivers for Jan to a fulltime, live-in nurse who, thankfully, is there to raise the red flag about his failing health as he tries to ignore the depression overtaking him and who ultimately helps him see and come to terms with the need to consider assisted living for Jan and eventually a new type of life for himself.
The book has a candor that people going through this situation will appreciate, such as the loss, in stages, of intimacy, including the time when Jan, now in assisted living and perhaps not even realizing who Barry is, offers herself to him. The agony of these moments paints the type of clear picture of AD that other books are at times afraid to address. Another reality includes having some friends who are supportive, but others who are quick to condemn the decisions being made, such as moving Jan to assisted living. “They saw a Jan who was still cheerful and beautiful. That is how The Disease works. It doesn’t distort the body, and it can leave some traits alive, like Jan’s smile and laughter,” he writes. “If you aren’t there at the bad moments, if you aren’t there to agonize over another sign of deterioration, you couldn’t see how much she had changed.”
For Barry and for many loved ones of a person with AD, the transition to assisted living doesn’t bring an end to sadness and depression. He honestly talks about the guilt of not just surviving, but also surrounding the question of moving ahead with his life: “I could not protect Jan and now cannot stop or even slow what is going on. I feel powerless and helpless and, yes, finally, useless. There are moments when I feel such intense failure that I simply freeze in place and wonder about just getting up and going on. Why bother? If I couldn’t take care of Jan, what really was my life all about? And worse, do I really want the ‘rest of my life’ like this?”
Despite Jan’s own mother, among many others, telling him that he needs to start living again, even possibly sharing his life with another woman, he is at first unable to consider that.: “…then came a loud, insistent banging at the door and I opened it and in walked guilt.” He even tries therapy to talk himself out of needing someone new in his life.
Barry Petersen’s journey, which eventually includes fashioning a new life—one that includes Jan—offers the comfort that people struggling in these circumstances need: honesty and the knowledge that you are not alone.