"Jan's Story" Provides Honest Portrayal of Early Onset Alzheimer's Caregiving
Honest. Heartbreaking. Thought-provoking.
The tale that CBS correspondent Barry Petersen in his new book, “Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s,” tells about the life that he shared with his wife, Jan Carlton, gives readers an inside glimpse into their whirlwind life spent covering news stories around the world as well as Jan’s diagnosis of and battle with early onset Alzheimer’s. (I was provided a review copy of the book by the publishers. In addition, Carol Bradley Bursack has reviewed the book.) In addition, Petersen shared Jan’s saga in a very moving story on recent edition of Sunday Morning on CBS.
The 193-page book, which is an easy read, succeeds in taking you into the deepest horrors that “The Disease” (as Petersen calls Alzheimer’s) creates for a caregiver. You can feel Petersen’s angst as his 55-year-old wife, whose previous behavior appeared normal, suddenly showed symptoms of dementia. Petersen, who was stationed at the time as CBS’s Asian correspondent, left their apartment to cover a story in Tokyo on a Saturday in September 2005. “When I returned, it was like I came back to a different person,” Petersen told me in a phone interview. “She was hearing voices in the living room. When she went down to the corner grocery, people were telling her what to buy, which is pretty amazing when you think that these people are all Japanese and Jan doesn’t speak Japanese. She also did something that I think is almost impossible to do. She would make a full and complete normal sentence, but the words would be out of order. She was putting y the noun after the verb, the adverb before the verb – those kinds of things – and it was really scary.”
The signs continued throughout the weekend. “She would get ready for bed and put on her regular clothes like she was going to the grocery store instead of her pajamas,” Petersen said. “She went to make hamburgers and she put the hamburgers in a big cast-iron pot that you use for making pasta. She put a frying pan on top and put the heat on full high, walked in, and said, ‘I think I’ll take a nap now.’ That scared the daylights out of me.”
Because Petersen and his wife lived half-way around the globe, there was a delay in getting assistance from an American doctor. “Because it was Tokyo and it’s a different time zone, I finally reached a neurologist about 4 a.m. after these three days who made the diagnosis over the phone,” Petersen said. “The next day – Day 4 – Jan was pretty much back to normal and had no memory of the weekend. Seeing that Jan had no memories (of the weekend’s events) said to me that we’re in a lot of trouble. What it didn’t way to me and should have is, ‘Your life as you know it is over.’ It took a while for that to sink in.”
Petersen now believes he saw some signs that Jan may have been succumbing to Alzheimer’s disease while in her 40s “In retrospect, when dealing with a person in his or her 40s and 50s, people don’t jump to the idea that the person might have Alzheimer’s,” Petersen said. “When dealing with somebody who is 90, you might say, ‘Well, he’s showing some times. Hmmm, we might need to investigate this.’ But someone in her 50s? People tell me that even doctors dealing with this disease are really hesitant to make that jump from realizing that the person is repeating himself and having short-term memory loss to a sign that this is something truly serious. If I did one thing really well, it was to deny what was happening. I didn’t want to see anything wrong with Jan.”
In the book, Petersen goes into detail describing the challenges he faced in caregiving while having a full-time job that required extensive travel. He recounts the toll that Jan’s condition took on him emotionally and physically. He also talks about the live-in caregiver he had to hire, as well as the support network he formed online. And he describes s the steps that he’s taken to create a new life after having to place Jan in an assisted living facility. I’ll cover some of these topics in future shareposts.
“Jan’s Story” is a great book to help people to understand the challenges that caregivers face in dealing with Alzheimer’s. Petersen, who is donating 10 percent of the book royalties to the Alzheimer’s disease, hopes the book offers a lesson for people who are caregiving for a loved one with Alzheimer’s: “Reach out and find friends who have gone through this before. You can’t do this alone.”