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
My sweet Chrislyn:
As well as I know you, I have never heard you speak about Alzheimer’s in your family. I am so sorry that this awful disease has touched your family so frequently. You have written such an in-depth story of how you remember your sweet grandparents, and I can just imagine your first encounter with your sweet grandpa and how he would smile, never knowing who you were. You have first hand knowledge of the sadness it causes within a family unit, especially when in your culture, everyone lived together.
Thank you so much for sharing from you heart. You have painted a remarkable picture for all of us, and you have made a point about living in the moment, finding out all about your family, sharing stories and information, which in turn will keep them always alive in our heart.
Thank you so much for your interest in our blog.
Momma Pat
Mom,
Thank you for being willing to learn more about this disease and to support those groups around you that work directly with the victims. What you shared was so informative, I can’t wait to read the books. I watched the news clip, and it was almost too much to take. Thinking of myself and my relationship with my husband, I can’t imagine not knowing him, or he me. How devastating. I would like for Kevin to enjoy his life, and I think it’s something that we may need to discuss.
I love the learning that takes place on our blog!! Thanks for dedicating yourself to the team.
Love you,
kari
My sweet daughter . .
As you know, education is powerful. The enormity of Alzheimer’s is all around us. We may know someone right now who has yet to be diagnosed. Your inquisitive mind leads me to believe that no matter how young or how old we are, we are all susceptible to the ravages of an incurable demon that slips into our mind and devours the only true thing that makes us who we are. I have read that Early Onset Alzheimer’s has been diagnosed in people as young as 30. That is more than I can comprehend.
I’m so proud of you that you would be willing to have that conversation with Kevin. It’s a matter of finding out the from our family the most difficult of conversations – two in particular: “These are the services I want when I die” and, “we should talk about what would happen if one of us was diagnosed with Alzheimer’s. Do we need to look at Long Term Care Insurance now?
Thank you for your openness and your willingness to learn!
Love You…
Momma
Momma & Sis,
Since Alzheimers runs in both sides of my family Bruce and I have had conversations about this affecting us. I have been paying into long term care for the past four years so Bruce and the Kids will not be overwhelmed and burdened with a monument of debt if I am diagnosed some day. Over the years I have watched my Mom go thru her ups and downs both emotionally and financially. I would never want Bruce and the kids to have the financial burden as an added struggle. Love you both <3
Chrislyn:
I had no idea of the extend of your knowledge and the very smart decision you made 4 years ago. I am so very proud of you, and impressed by the very fact that you are thinking so much farther down the road. You are a young woman, but because you have walked this walk, you have put into place a plan to save your family the burden of care.
I love you deeply, and will always wish the very best for you and your family.
Love,
Moma
MP,
This is one of those topics that we tend to avoid because the unknown is unbelievably scary.
The thought of those closest to us becoming a casualty of this devastating disease is too unbearable to think about.
I talk to my mom on the phone every day. Each time she has a “senior moment” and stumbles over a word or has a forgetful moment I get nervous. What if she is showing early signs of Alzheimer’s? I am certain that is not the case, but this disease is so scary that we jump to that conclusion easily when those we love are forgetful or act out of the ordinary.
Thank you for sharing Barry’s perspective with us. This is a book I will add to my list. I can’t even imagine finding the love of your life, imagining growing old together and that dream being stripped from you.
Your work in the community to gain more knowledge and educate others about Alzheimer’s is commendable.
You are an inspiration.
Love you,
Lori
Lorie:
I certainly understand your fears with your mom. However, the awful life change becomes really apparent when forgetfulness becomes a way of life. I forget stuff all the time – and the very sad thing about that is we tend to make fun of our forgetfulness by saying “I’m pre-Alzheimer or I’m having a senior moment. I would love for all of us to take the time to educate ourselves and become more of an advocate of The Disease, than one who fears it or makes light of it. I gained such a new respect for those who are suffering and those who are caring for their loved one.
I love your interest in the book. It’s simplicity will bring you to your knees as Barry reveals the effects and aftermath of this awful – non-curable, long suffering hell.
Love to you,
MP
Thank you for writing this. I havent personally had Alzheimers in my family, but in my profession I have seen many touched by Alzheimers. It is so difficult watching these families deal with this. My heart and prayers go out to them. One of my clients mother in law suffered from Alzheimers in 2006 and now her own mother is suffering. Thank you again for writing such a poignant blogpiece.
Warm Blessings to you Patricia..
Susan
Susan:
Thank you so much for your comments and thanks so much for following our blogs. This was a really emotional piece for me . . . reading and researching the cause and effects of this disease from hell. And, for me, understanding how it can destroy not only the one with, but the ones who care for and love them. Without warning . . . you are diagnosed. No cure, no time limit. It’s simply devastating.
The more we know, the more we can support!
Thank you!
Pat
Pat,
Thanks for your dedication of learning and sharing about what most of us think is unbearable. It most certainly is however it is someones reality. A reality we never want to face or believe it would happen to us. It is very true to say until you walk in their shoes do you know. Some are strong beyond belief while others are weak and become overwhelmed and exhausted.
Education is key for survival I believe. If everyone was as dedicated as you about educating the community how wonderful that would be. Thanks for sharing and opening up my eyes to something that is way more then I thought it was. You are truly an inspiration and I am blessed to work with you.
Amy