Jan's Story is Honest, Heart-Breaking Account of Living With Alzheimer's

This book is going to raise some hackles. It's also going to enlighten a lot of people. By CBS correspondent Barry Petersen, Jan's Story is an account of his wife's struggle with Early Onset Alzheimer's. While Petersen's book is a loving tribute to his young and vibrant wife, it is also an unvarnished account of the toll exacted by the process of living with Alzheimer's. The tough decisions made by Petersen sometimes dismayed friends and family, and some of his readers will find fault with them as well. Still, Petersen's book is as honest as they come, and as heart-wrenching.

Humans love stories, and this book about living with Alzheimer's will strike chords that a purely informative book could not. Petersen begins by describing the first time that Jan "walked through the Looking Glass," Petersen's term for the early manifestations of Alzheimer's. For three days, Jan heard voices, jumbled her sentences and dressed in street clothes at bedtime. The couple lived in Tokyo at the time, and a neurologist that Petersen reached back in the States gave him the first glimpse of the future.

"She has Alzheimer's Disease," the neurologist said. It was Early Onset Alzheimer's. Jan was 55 years old.

Jan returned to seeming normalcy for a while, but the normalcy was to be short-lived. Petersen traces the onward march of the disease with chapter headings that describe what happens in each stage of Alzheimer's, followed by descriptions of what each stage was like for Jan. The book is also sprinkled with emails. After a first upbeat email from Jan to a friend telling of her diagnosis, the emails consist of Petersen's updates to family and friends, with an occasional email reply from one of that circle.

Although the book is titled Jan's Story, the book could just as easily have been titled Barry's Story. What happens to caregivers during the progress of Alzheimer's is just as dramatic and just as tragic as what happens to the patients themselves.

Petersen's journey as a caregiver unfolded in three acts. In the first act, he attempted to care for Jan himself, although he had a demanding job in news. Already covering home bases in Tokyo and Beijing, Petersen was on call virtually 24 hours a day, as well as dealing with Jan's worsening symptoms. She became incapable of packing a suitcase or deciding which sandwich to order for lunch. She often needed help to go to the bathroom at night. She didn't respond to intimate caresses as she used to. It was time for the second act: getting help.

Petersen found a caregiver named Diane and experienced some relief for a while. Then another of Alzheimer's many symptoms struck--anger. Diane became the enemy, and Petersen's well-being declined as he negotiated this new stage. The second act lasted only a few months as both he and Diane realized that it was time to make the transition to assisted living. Some of Jan's friends and family reacted angrily to his decision to begin the third act of Jan's care, but by the time Jan had been in assisted living for a few months, she was failing to recognize her husband.

Around this time, deprived of intimacy and companionship for years, Petersen began to think of another relationship, another decision that would bring him some censure but also some support from surprising quarters, including Jan's mother.

At the time of publication, Petersen had moved both himself and Jan to Denver, and he and his new partner share overseeing Jan's care in an assisted living facility. It's an interesting conclusion to a story that from the beginning could have no really happy outcome.

Disclosure: A review copy was provided by the publisher. For more information, please see our Ethics Policy.