Jan’s Story by Barry Petersen

June 15 is Release Day for Barry Petersen’s heart-wrenching book Jan’s Story. It’s no doubt that Alzheimer’s is a cruel disease that robs us of our loved ones in the sunset of their lives. They slip into a netherworld that keeps the body deliciously intact while stealing the best parts – their minds and their memories.

Now, imagine this happening to your wife or husband, brother or sister when they’re in their thirties, forties, or fifties. This is the fate of Early Onset Alzheimer sufferers. It steals earlier, hits harder, and destroys faster.

Barry Petersen’s Jan’s Story is a beautiful, emotional tribute to his darling wife Jan – the lives they shared, the fun and fascinating things they crammed in before he lost her forever. This book is a “gotta have it” for anyone whose life has been touched by Alzheimer’s because Barry offers a safe haven to those who have thrust their fists into the air and questioned God for allowing their loves to be torn away from them.

Jan’s decent into Early Onset highlights the particular cruelty of this disease. Since Jan was only in her fifties, this made it nearly impossible for Barry, who held a high power career as CBS News’ Asian correspondent and was known to have to travel with very little notice.  This stands in sharp contrast to Alzheimer’s, where its sufferers are older people and their caretakers are retired and can offer the full time care they need. As Barry notes, Early Onset hits in the prime of life, those who have full careers, possibly young children. Those left behind are often financially and personally ill-prepared to balance their busy lives with sudden ’round the clock care. How do they cope mentally and financially?

Barry also brings up a taboo subject that really must be brought into the light of day due to the growing prevalence of Early Onset – and that is the idea of love.  We are a people not meant to be islands, so what becomes of the one left behind? Is it their fate to live their lives without love and affection, or are they allowed to find love? This is a controversial notion that, to date, no one is talking about, and Barry is the first to tackle this tough issue. How does one watch the love of his life become little more than a beautiful shell of her former self and remain sane?

The Alzheimer Association was equally touched by Barry’s story and has given their permission to put their logo on his book. We see this as the bible for Early Onset Alzheimer’s for it’s personal journey down a long dark road, and the subsequent reference notes at the back.

For a taste of Barry, I recommend you read his blog post. Then go out and buy his wonderful book.

And don’t forget to keep a box of Kleenex nearby.

10 Responses to Jan’s Story by Barry Petersen

  1. cat says:

    There was a truly heart wrenching report in the media recently of a young woman who began a rapid descent into Alzheimer’s during pregnancy and does not now know her own baby. How lucky are the rest of us! I am glad you did this book Lynn and I hope a lot of people read it.

  2. Oh, I think the topic comes up but our society is very much focused on the ill person and not the caregiver.

    Example: Terry Schiavo’s husband. He eventually moved on though he still was responsible for his wife’s physical maintenance (b/c that’s all it is at some point) and he was shredded for it. And that’s where our society is at.

    I think it is partly b/c we have a hard time wrapping our minds around the idea that relationships really are more than physical. That the mind connection is just as key and we are also big on the whole “sacrifice” thing where the caregiving partner is concerned. We love the noble aspects and don’t like being disillusioned when these saintly people turn out to have needs and frustrations and such. It’s messy and it’s scary b/c “there but for the grace of god”, right? We all want to believe that we’d be just as strong and ready to be immortalized in a Lifetime movie for Women.

    Good for him for being honest. It’s very difficult to admit a lot of that aloud.

  3. Dee says:

    Just watched Jan’s Story on cbs Sunday Morning. Wow, I am in tears! This is incredibly hard for everyone involved. Barry is an honorable man. As long as he keeps Jan in his life and tends to her as he does, thats all that matters. No reason for him to be alone. God bless all three of them.

  4. Lori says:

    Just ordered the book. God Bless you Mr. Peterson! I know how difficult it is to face this horrific disease as my mother does not recognize me any longer but instead of being her daughter she can see me as her for the moment friend. Although it breaks my heart, she is happy when I visit and that is what’s important!

  5. Lori, Dee, thank you for sharing your thoughts and pains. Working with Barry on this difficult subject was an honor, and there were lots of tears shed on both sides of the phone during our marathon editing sessions.

  6. Patricia McLoughlin says:

    This is such a tragic disease. My best friends brother was 45 when diagnosed, he is 50 now with a 7 year old. It is only a matter of time when he will be in assisted living. His son will never know what a smart, wonderful man his dad was. I truly thank Mr. Petersen for making this documentary.

  7. Ed says:

    Alzheimer’s currently can only be truly diagnosed with an autopsy so it’s a travesty when modern medicine so quickly tosses such heartbreaking diagnosis at someones loved one. Autopsy for Dementia: Commonly Asked Questions http://acsresearch.swmed.edu/adc/QandA.pdf Calling for an autopsy would be a horrific decision to add to the despair of the family members but as awful as it sounds to silence questions of how a person died may ease the uncertainty, find out a cure for what the person may have died from if not Alzheimer’s but to frivolously toss that diagnosis around without facts is a horrific thing to do to a family. I know because my mother was diagnosed with “early onset of Alzheimer’s” when in fact she suffered from Vascular Dementia. She was then over medicated and treated for Alzheimer’s. She died of mini-strokes and yet the physician without factual evidence of an autopsy to the alternative; stated Alzheimer’s. These physicians should never be allowed to practice as they do a disservice to the public at large by propagating deceptive diagnosis which does nothing to serve the family or society. More background can be found here: 10 Types of Dementia That Aren’t Alzheimer’s and How They’re Diagnosed

  8. Tricia says:

    Although the Petersons appear to be privileged, worldly traveled, and well-known among the elite, The Disease is not a respecter of persons. It thoroughly brought the author to his knees in a very human way, making him our next-door-neighbor, brother, friend. Watching the piece on CBS Sunday Morning, I was astounded that Jan called out “darling” upon seeing Barry, then did not know who was seated in front of her as they talked together. It was heartbreaking, and yet, for a glimmer of a moment she must have known/remembered her true love. The book was eye-opening. Jan was and still is a very lucky woman that fate brought her a ‘darling’ for the short time she had. On a personal note, we are watching the changes of a wonderful man – the husband of a couple who are best friends of my in-laws. A retired auto-maker supervisor, he was bright, fun, and knew how to tell a story to keep your full attention. Now he sits at the dinner table and never speaks – unless you mention something about his stint in the service following World War II. It is like his mind suddenly awakens. When we visit their home he kisses my cheek, takes our wraps, and asks if we have ever been to their home before. Once again we’ll get the tour. Thank you, Barry, for opening your innermost thoughts, feelings, and fears to your readers. Thanks be to God that in your darkest hours you reframed from self destruction. Your experience needed to be shared with humanity. God Bless your renewed life.

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  10. causes of dementia…

    […]Jan’s Story by Barry Petersen « Behler Blog[…]…

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