With no warning, Jan had her first episode – a terrifying three days during which she heard voices in the local market, couldn’t make coherent sentences, and would turn the stove to high and walk away. A frightened Barry called a California neurologist at 4 a.m. from their Tokyo home. Without even needing to see her, the doctor made the diagnosis – it was Early Onset Alzheimer’s Disease. “Perhaps it is good to have a name for a disease that will rob and cheat and steal and slowly suck the person you love away from you,” Barry recalls in Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s (Behler Publications; June 15, 2010; $15.95). Jan was only 55, and they had no idea that the life they had worked so hard to create…was over.
“On a Monday we are ordinary people doing our jobs, raising our families, and fretting over mortgages or kids. Then on Tuesday, with no more warning than a doctor’s diagnosis, we are recruited without asking, into a job for which we have no preparation and facing sudden downward changes in our lives that we cannot predict,” writes Petersen of the millions of caregivers faced with a loved one’s diagnosis.
In the world of Alzheimer’s caregivers, it is called…as one social worker puts it…“the dirty secret of the disease.” A secret about love lost and then facing the question of moving on. This secret is explored openly and frankly in JAN’S STORY. Petersen, an Emmy award-winning CBS News Correspondent, tells not only of losing the woman he loved intensely for 25 years, but also of the guilt and doubt over finding a new relationship as Jan slipped ever deeper into the mist of Alzheimer’s. Still married and caring for Jan, what woman would want a relationship with him? In the end, Barry found Mary Nell, who reached into the depths of her own compassion to become a friend and co-caregiver helping to oversee Jan in an assisted living facility.
Barry, Mary Nell and Jan are part of a rapidly escalating trend…the New American Family where one person is alive, but mentally gone. The Alzheimer’s Association warns that as America’s Baby Boomers age, this type of family will number into the millions. And each and every one will have to answer one question as Barry did: Is finding a new person in my life right…or wrong?
This book is already changing lives. After reading an advance copy of JAN’S STORY, one woman, whose husband suffers from dementia, sent this note:
Probably the most profound thing I found in the book was the change in your feelings of intimacy with Jan as your wife. It has taken me a long time to understand how different I feel toward Al and admit to myself that is OK and part of the process. Thank you for being so open and forthright. It has helped me a great deal…Edy
Barry was guided during this process, as he explains in the book, by what Jan had taught him. “You must do your best to love what you have, in that moment, at that time. You must choose love. You must choose life.” With a grieving and guilty heart, Barry tentatively opened himself up to love once again. Jan’s care would always be his first priority, but he needed to move on. He needed to choose life.
JAN’S STORY (Behler Publications; June 15, 2010; $15.95) is available at Amazon.com: http://www.amazon.com/Jans-Story-Love-goodbye-Alzheimers/dp/1933016442/ref=sr_1_1?ie=UTF8&s=books&qid=1276540712&sr=8-1
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