Nearly half a million new Alzheimer’s cases are diagnosed each year in the U.S. In many instances, the caregiving falls to a family member, leaving them in unfamiliar, often frightening territory. That’s exactly what happened to Robert Hershberger. The Payson author chronicled his experience caring for his wife, Dee, as she succumbed to the disease. The almost-daily entries were eventually published as a memoir of sorts. Diary of an Alzheimer’s Caregiver provides an unflinching look at the shocking and oftentimes uncomfortable realities of caring for a loved one with Alzheimer’s.
Robert Hershberger spoke with KNAU’s Bree Burkitt.
When did you first realize something was wrong with Dee?
In 2010, one day, my wife asked me to come to the refrigerator and asked me what the green stuff was in the hydrator. And I said, “Sweetie, that's celery.” And she said, celery, celery. Okay, I know it's celery. But a couple of minutes later, she couldn’t remember that it was celery was a word that she lost and she was a very bright, well-educated woman. That the first indication of Alzheimer's was losing words.
How did the diary come about?
I kept having different doctors ask me, “When did this occur? When did that occur? When did you first notice…?” I decided I'd better keep her a log and it gradually became a diary. It became a kind of a purge of my mind because when a person gets Alzheimer's, they become pretty dependent on the caregiver. And they, and at least in her case, she felt if I wasn't paying attention to her, I was purposely ignoring her. And so I really couldn't do much during the day, unless I did it with her so in the evening, then after she was asleep, I would write down the day. And so it became a kind of a daily diary and quite a few times, I missed a few a day or two — usually when things were going pretty good and I didn't feel a need to do it. But, as time went on, it became more and more difficult to care for her.
What inspired you to turn your experience into a book?
I learned a lot of things that people ought to know. Like, for instance, if a person's losing their memory and you want to get them into proper care and the like, you need to get their signature on a lot of things. And I think we — like many people — we just thought we'd both live until we were very old and die in each other's arms. We never thought about the fact that one of us might go first. So that first year, I learned quite a bit. And each year, I learned something different. I learned new things and so I thought I'd better I did write this down. I better share it with other people.
What’s one piece of advice you would give to someone going through the same thing?
I was totally unprepared to be a caregiver for a wife who I loved that Alzheimer's and so it seemed like I went from one mistake to the next. Any day of the week, one of you might have some serious problem come up — cancer or whatever — you may end up being a caregiver just out of the blue — a stroke — or something like that, and kind of think about these things now while you can do it rationally, and you can do it not in a totally emotional environment. And while you're thinking about it, if you're in that situation, who would you want to have around you and wherever you want to be.
Well, Robert, thank you so much for telling your story.
All right. Thank you.
The Northern Arizona Alzheimer’s and Dementia Alliance can provide support for those affected by the disease. More information is available at nazada.org.
