Friday, July 9, 2010

Jan's Story

Publisher's Summary. In Jan’s Story you will meet an amazing, lively and vivacious woman who loved her husband and her life, and who globe-trotted from country to country with aplomb. Jan laughed easily and thought life was about adventure and relished every new one that came along as she and Barry moved from postings in San Francisco to Tokyo to Moscow to London and back to Japan and China.

There was no dramatic moment, no instant of knowing how much life would change with the 2005 diagnosis of Early Onset Alzheimer’s Disease, when Jan was only 55. At first, she fought against the deterioration as best she could. But the medicines could not cure, only slow the disease.

And Barry, a journalist who had seen the worst of the world, from wars and genocide to the murder of innocent children, was not prepared for watching and enduring Jan’s fading away.

There was her unpredictable behavior that got worse, the caregiving that seemed controllable in the beginning and ended up sapping both his mental and physical health, the aching and inevitable decision that Jan needed to go into an assisted living facility. For Barry, then living in Tokyo, it meant moving her back to America, half a world away from him.

There were tough decisions along the way that some applauded and others condemned. There were friends who saw what he was enduring and offered not just advice, but their own suggestions of hope. There were fellow travelers on the same journey as caregivers who reached out to comfort and share what they had learned.

As Jan deteriorated to the point of not even remembering him, Barry finally reached the lonely dangerous midnight of a saddened and defeated soul, and he had to decide…to surrender…or survive.

His answer is Jan’s Story.

“Until death do we part” is a standard pledge in many marriage ceremonies, but what does this vow mean when your spouse doesn’t remember who you are? How does one remain true to one’s partner while at the same time acknowledging that the marital relationship is gone forever? When Barry Petersen’s wife Jan, is diagnosed with Early Onset Alzheimer’s (“the Disease”) at age 55, the author is eventually faced with this heartbreaking dilemma.

According to Petersen, his wife and he were the “darling and darling couple” -- a married pair who never tired of each other’s company – that is until the day in 2005 when the Disease reared its ugly head. As Petersen confesses:

The Disease progresses no matter how hard you push back.

If I had to paint a picture of my life in those first weeks and months, it would look like something from kindergarten. I would take all the beautiful colors of Jan; our experiences and remembrances, our plans, our intense love, the sound of her voice, how she felt in my arms, how in the middle of the night when she was asleep I could snuggle against her back and she would readjust to fold tight against me and then I could wrap my arm around her.

And I would twist the brush in vicious strokes, back and forth, until all those beautiful colors were a mix of bright and dark that no longer makes sense.

During the next several years Petersen tries to keep Jan and their life as a couple intact. First by being her sole caregiver, then with hired “buddies” (paid caregivers), and finally with Jan’s placement in an assisted living community.

Jan’s Story does not provide easy answers to the above questions and some readers may disagree with how Petersen chose to answer his dilemma, but the majority of readers should appreciate his candor in dealing with a situation no spouse should face.

Publisher: Behler Publications (June 15, 2010), 206 pages.
Advance review copy provided courtesy of the publisher.


  1. This book sounds heart breaking. My 90 year old father is suffering some dementia now - it's really not that bad, but it gives me an idea of the horror of Alzheimer's.

  2. How sad, that is just so early. Breaks my heart

  3. Aww. this sounds so sad. What an early age to be diagnosed with this horrible disease.

  4. My father had Alzheimer's, but he in was in his 70's when diagnosed. A tragedy for the victim of early diagnosis. It's hard to relate how much this disease changes the individual. If you've been there and seen it up close, you understand. If you haven't, I pray you never will. However, I'm afraid that Alzheimer's and dementia are increasing probably because the population as a whole is living longer. The brain wears out too.

    Having supported my mother as she watched my father slip further and further away and then caring for her through her own battle with dementia, I'll not pick this one up. That stage of my life is over now that both of them are gone. However, I do recommend that anyone who is dealing with the early stages of Alzheimer's or dementia or who has a family member who has been diagnosed educate themselves. There's a lot to come and I think it's better and easier to bear if you are prepared. Thanks for sharing!

  5. This one reminds me of Still Alice by Lisa Genova. Early onset Alzheimer is one of the hardest illnesses to contend with. It sounds like a sad story.

  6. 55 seems so young! This must have been a very difficult book to write and an intense and emotional reading experience.

  7. This seems like a heartbreaking story. So young to be afflicted.

  8. I have this one to read to and I expect it will be a difficult on - but important to read nonetheless.

    Thanks for the review!