Journey Mercies . . . Alzheimers: Walking Into Oblivion
Journey Mercies . . . Alzheimers: Walking Into Oblivion
In her book To Kill a Mockingbird, Harper Lee beautifully wrote . . .
I found this to be the case as I learned more about Barry Petersen.
November is National Alzheimer Awareness Month and our Blog Coordinator, Molly Keating, asked me if I would take the opportunity to write something that we could share to help bring more awareness to this insidious disease. Other than those who were famous and who were willing to share their fate, (President Ronald Reagan, Charlton Heston, and most recently, Glen Campbell) my only connection with Alzheimer’s is with two very close friends, a girlfriend whose mother was diagnosed, and a fellow Rotarian whose wife was diagnosed. Both have expressed their love and devotion, as well as their concern for their care. In conversations with them I have asked naïve, simple questions as I didn’t want them to feel as if I was prying but I also didn’t really know what to ask because I didn’t have any deep knowledge of their situation.
I remember seeing a story several years ago that was shown on the CBS News program “Sunday Morning”, with Charles Osgood. It was a short story told by news reporter Barry Peterson who’s poignant and heart-wrenching account brought tears to my eyes. (You can watch the video I saw here)
Jan Chorlton was a beautiful, vivacious, smart news reporter and Barry Peterson fell head over heels for her. After going through a very tough divorce he never expected to find anyone with her charisma, much less her looks. They fell in love, married in 1985 and . . . of course you would always end that sentence with “and they lived happily every after,” right? Nothing could have been further from the truth. In Barry Peterson’s book Jan’s Story, he describes a love lost to a diagnosis of Early Onset Alzheimer’s Disease. Most people think of Alzheimer’s as a disease of the old. His wife, Jan, was diagnosed in 2005 at the age of 55. His book chronicles their journey into the abyss of Alzheimer’s Disease.
Via amazon.com
In this incredible book his pain is palpable as he describes in detail Jan’s decent into that dark hole. He confesses to spending years denying that anything was wrong. Chronicling the “Seven Stages of Alzheimer’s Disease,” Barry reveals all of the sadness, anger, guilt, exhaustion and helplessness he felt and still feels as he watches the love of his life continue to change before him. The first stage entitled, Walking Into Oblivion: Stage One, reads: No impairment (normal function). Unimpaired individuals experience no memory problems and none are evident to a healthcare professional during a medical interview. As Barry put it, “it seems strange that the first Stage of Alzheimer’s is about showing no obvious symptoms. The answer lies within the disease, an answer that offers the additional terror that Alzheimer’s is already at work before a person knows it.”
After reading Jan’s Story I have been realizing how much I didn’t know, how much I couldn’t or didn’t want to believe what The Disease does, and how utterly terrifying it is. In the past I have attended and supported the Visionary Women’s luncheon, where each year the Women’s Circle of the Alzheimer’s Association honors Orange County caregivers who display extraordinary compassion in caring for those touched by Alzheimer’s disease and related forms of dementia. And, I know of the great educational programs the Orange County Chapter of the Alzheimer’s Association provide to our community, family and private caregivers, and professionals who care for Alzheimer patients. But I had never taken the time to really peel back the layers of The Disease and read a first hand account from one who is walking, running, fleeing from that which will destroy the life of the one suffering from it as well as the lives of those caring for them. Families agonize and relationships dissolve.
Barry Peterson offers the reader a personal tour of not only Jan’s descent, but his as well. He reveals how each and every day he loses a little more of Jan in mind and spirit . . . even while her body was still beautifully alive. His honesty reveals how difficult it was to find others who were caregivers that were willing to meet and create a safe place to speak freely. He brings to life the exhaustion of care-giving, and his immense loneliness. With amazing courage he exposes his own thoughts of suicide, the grief of love lost, and the rejection of his friends as he is judged to be “abandoning” Jan for eventually placing her in a home. He takes you to the brink and gives you the opportunity to make up your own mind about what you would do in his shoes. Decisions that meant he could survive another day.
It is a story of undeniable and enduring love – but a love of one dimension. A love that, destroyed by The Disease, provided no reciprocation. A love that was meant to live forever and which day by day faded into nothingness. It’s a story of a man who traveled a road alone, endured, and found renewal. Barry Peterson chose life.
If you haven’t had the opportunity to take an in-depth look at Alzheimer’s Disease and know and understand the insidious sinister way that it takes away all memory and leaves only the shell of what use to be, please pick up a copy of Jan’s Story or read Still Alice by Lisa Genova. Still Alice is a fictional account of Alice Howland, Cognitive Psychology Professor at Harvard University, who at 50 years old was diagnosed with Early Onset Alzheimer’s Disease.
None of us are certain what our future holds. Barry certainly imagined differently. What I know for sure is not to stand in judgment of others, especially when we don’t want to imagine what it would be like to walk in their shoes. I’ve learned so much from the courageous authors, Barry Peterson and Lisa Genova. I’ve learned that there are some things that we have no control over, and some things we do. I will choose knowledge and understanding that leads to compassion. I will choose life.
39 Comments
Mom,
With each blog you write I am continually impressed. You research so well and write with such compassion. Reading this blog about this insidious disease has brought much needed awareness. I really want to read both of those books now. And Chrislyn’s own account of how Alzheimer’s has touched her life and family brought me to tears. The suffering of each family affected by this disease is tremendous. Mom, I love reading your blog. You evoke so much emotion when you write. I love you.
Kori Marie
Kori . .
I’ve had so many of my friends and colleagues click on the video of Barry Peterson’s interview with his wife, Joy, as well as mention that they want to get the book. Our hope when we right is to have so effect on those who are reading it. Whether good or not so good, it’s the awareness and the interaction that counts.
You will, I know, find a new respect for those families whose lives have been devastated by this terrible Disease.
Love
Momma
Aunt Pat,
I have to admit that I knew almost nothing about Alzheimer’s until this blog series started. I knew the most prominent part, that memory was affected and lost. What I didn’t know was the total scrambling it did to everything, personality, speech, and eventually the body. Your opening of this book has opened it up for me as well and I’m so grateful to you for continuing to pass on the pain & horror of this story.
I’m sincerely stunned by the harrowing tragedy suffered by the family members as they say their “long goodbye”. I can’t imagine the repetitive grief they endure with each visit and proof of the disease.
Thank you for sharing this with us & enlightening me so that the next time I hear about this disease hurting someone I will have a better understanding, I’ll know what kinds of questions to ask, that they need my compassion.
You’ve given me an opportunity, knowledge and heart for this long suffering group of people.
Molly . .
We are all forever learners in this life. This book has not only opened my eyes to the tragic life sentence that it hands out to families, but has given a name and a face to Barry’s family and friends. He makes his life an “open book” so that others may learn and become advocates.
Thank you for your support and your willingness to learn more about other’s sufferings.
AP
Pat,
This is a GREAT post. You are a strong writer…your words are clear, specific and heart-felt. You balanced the giving of new knowledge about early-onset Alzheimer’s with compassionate story-telling.
Thanks for sharing this needed information!
Joey . .
Thank you so very much for your interest in my blog and for the support you have shown for my writing. I am honored to have you evaluate me and provide encouragement.
“Jan’s Story” was one that I could not put down, and when I did, I had a hard time falling asleep – my mind spinning with the fear we all might feel when we think it could be us.
I’m enjoying my writing and the opportunity it gives to share life experiences, as well as areas of great concern to me.
Thank you again, Joey. I so respect your opinions and your writings as well.
Pat
I am looking for an Epilogue to Barry Peterson’s Jan’s Story book. Several Support Groups are discussing dating, relationships and I’m personally struggling becoming more public of my loving relationship with an amazing care giver who “gets it” and is accepting of my love for my wife in Memory Care while falling in love with me too. Further dialog and discussion is most welcome.
Pat,
Very compelling writing. Some stories and facts are life situations that must be said,must be heard,must be accepted for what they are, and, certainly, must be felt.
I have not had the experience of dealing with this disease, but it is a unique one because of the lack of knowledge of its causes. It is one of those that hangs over us our whole lives now that we, indeed, accept the fact as a society that it exists. We put worries about it in the back of our minds. “I’m getting older and sometimes forget names, words, etc…is this just getting old, is it because I worry and am processing/holding on to too many facts/situations at one time, or am I experiencing the beginnings of this unknown mind robber? How do I know, am I getting worse,or am I overreacting?”
Then we see yet another name of a very vital, intelligent, sometimes gifted person who’s diagnosis is made public (with great courage in my mind to do so). “This person is privileged…smarter than me…has been able to earn/get more out of life than me…is known by so many others for who they are than I am. But they are still not SAFE, they are not in a privileged class that remains above and away from/protected from such a common scenario that affects OTHER PEOPLE.” They could not get or pay for any operation to “just fix this”.
If they are not protected,what am I to do? Many diseases thru the ages have elicited such fear.
Knowledge is power and we have today’s science working on it. May we hope and pray that this is another life curse that may one day indeed be put behind us.
In the meantime, acceptance of people just trying to do the best with what they have is not an option, it is our personal responsibility. The human species remains, as always, a “work in progress”, but, we are making progress and that gives us all hope.
Thank you,
Greg
Hi Greg:
Thank you so much for your wisdom and your insight that speaks volumes to the fears that we all have with regard to Alzheimer’s. You are so right to say that none of us is “safe” from it. It does not let you know it’s time or it’s length of days.
Education is powerful, as long as we are not the recipient of the Disease. For knowledge only lets us know that we have no power to fight it. We can only pray for those whose brains function at a level so much higher level than mine, to find the reason for it and kill it!
Thank you Greg, I always find your words meaningful and nurturing.
Pat