Barry Petersen is a CBS News correspondent who lost his wife, Jan Chorlton Petersen, a former foreign correspondent for CBS television and radio, at age 63 to Early Onset Alzheimer's Disease. His brave and personal reporting chronicles the evisceration of Alzheimer's Disease not only on his stunning young wife, Jan, the patient, but on him, and all those connected to their lives.
The beautiful twist comes in the later sections of his book where he openly moves towards forming a new relationship while his wife Jan lives the remainder of her life in an assisted living facility. As Petersen said so well, "This is now a relationship of three."
Through the first chapters of the book I learned much about the earliest stages of this disease, of which there is little written. It seems that most information out there is about what happens after the diagnosis when life unravels into a twisted mess.
Many people living and loving right now with the earliest stages of this disease are in denial only because of lack of information. One may question things that become out of order, or are not characteristic of a person, and then ascribe the events to psychodynamic or attachment theories. It might drive some to search searching frantically through reams of books on relationships when those paths will end after the next episode of bizarre behavior. It is likely a sad relief to match up experiences with some of these vignettes.
Petersen titles the chapter on the first stage of Early Onset AD (criteria is that the symptoms must have been present before the age of 65) Walking Into Oblivion. Stage One, reads there is no impairment (normal function). Unimpaired individuals experience no memory problems and none are evident to a healthcare professional during a medical interview. Petersen says, "Alzheimer’s is already at work before a person knows it.” This can go on for many years, unnoticed, waiting to blossom in little bursts with long spans of time in between, tricking all those that may have had the privilege of noticing.
While I found the many detailed pages of life as an anchorperson distracting and lengthy, I wanted to continue on for more information. Of course this parallels how The Disease (what the author calls Early Onset Alzheimer's and aptly so) works. Life is normal for a while, weeks maybe, and then there is a lapse of a day, or half of a day. As The Disease closes in the time spans shorten so that by books end it was all that Barry Petersen wrote about.
"It gnaws at the brain with a pace that differs with every person, and sometimes it surrenders back some of what it has taken, with an evil, unpredictable subtleness that fuels a false hope that time is not running out," wrote Petersen.
Before the diagnosis there was much to take note of, most of this in hindsight. It was after the diagnosis that the book became a story that moved me. As much as I longed for unbiased vignettes beforehand, Petersen's story hits that mark closely enough.
Petersen developed closer friendships with people going through similar struggles, friends that validated so much of what Petersen, initially the sole caregiver, experienced. One friend wrote this to him in an email:
"The hiding or rearranging of things is very familiar. Dorothee took everything out of her dresser about four years ago and then put it all back but in different drawers. Then she accused me of giving her things away because she couldn't find them. She would also take her doll collection and hide them in different places and forget where they were. She would tell me that someone had stolen them. I finally put them on top of her dresser, which she can't reach. This all took place when I was still trying to reason with her and that made it more frustrating for me. I learned quickly not to try to reason with her. It doesn't work."
Petersen said that in the beginning, "Jan's friends and family could not see what I had been seeing day-today. It's not unusual for people to initially believe that a person with Alzheimer's is more capable than he/she really is. Many times, family members will incorrectly attribute challenging behaviors to ‘acting out’ as if they were doing it on purpose, rather than as a result of the disease.”
"She was beyond understanding difficult emotions. She was telling me things that I knew were not so. She would get things in her head and, no matter what I said, I could not change her mind. I learned that the only way to get around this was to first appear to agree with her."
"And lately she began buying the same things over and over. We had enough bottled water in the pantry to float a Navy destroyer, but still more would be delivered."
As the disease progressed, Barry Petersen faltered. His work and his soul suffered in ways most of us wouldn't stop to imagine. The time came for a caretaker so he could stay afloat spiritually and financially.
The caregiver scenario worked out for a while. Diane had experience in the progression of Alzheimer's and could manage the ways the disease changed every single part of a the way a person is.
"It was Diane who was now her main enemy. Jan insisted over and over that if Diane wasn't there our lives would magically get back to normal. We needed to “get rid of THAT woman.” No matter how much she counted to ten or went to her room to give her and Jan some separation in hopes of diffusing the anger, she faced what was, at times, an almost unreasoned hatred. The implication was clear; Diane was the “bad” caregiver who had been difficult for Jan to be around. Jan now sees Diane as the enemy and proof of her illness."
Petersen's tour reveals the growth of a man through unending grief and guilt, until he arrives to a place of choosing life and light over darkness and death. His beautiful wife Jan died in May of 2013, after the book was published, and in a CBS story about their story, one clip shows Petersen's new partner and him visiting Jan. They called it a "new American family."
Eventually relationships dissolve in the wake of the disease, and the day to day people carry an unwanted private collection of questions and scenarios, none of which fit into anything. Asking of the person is fruitless, even risky. Dialogue of any value ceases in favor of black and white reasoning, blame, and rages of confusion.
Petersen stresses how important it is to move on, and how this does not equal abandonment or detachment. Eventually there is no emotional reciprocation, compassion or caring from the person that had once been so present and full of life. It works its way from the inside out and at first, only those who are intimately involved see it.
It is a good reminder not to judge, ever. We don't know the other person's shoes, we don't know what happens within their four walls. It is best just to listen and learn, then see how to help.