In Retrospect

At age 59, my husband was released from his job. At age 60, testing began. And at 61, he was diagnosed with early-onset Alzheimer's. These are my thoughts and feelings about our experiences, good and not so good. I hope, on the whole, my chronicles will be an encouragement to you. Thank you for reading them. Hang on to your hope!

Now that I've made this diary "public" (well, more or less), people feel more comfortable asking me questions. That's a good thing, because one of the things I'm hoping to encourage is dialogue. "The Big A" is a scary thing, partly because it's a mystery. Partly because it's in the shadows. Partly because people think it's a mental illness, which it isn't. Because we can't see it, it's hard to know how to react to it. Because it makes us uncomfortable, we shy away from it.

One of the most commonly asked questions I've received is, "What were the warning signs? What did you first notice?"

Well, the problem is that when the warning signs are first happening, it's so easy to attribute them to something else. Alzheimer's isn't exactly the first thing you think of when a relatively young person starts exhibiting symptoms.

My husband was working long hours, and his job was a high pressure one with lots of responsibility not only for his own work, but for the work of others. Was he burning out? Was it hearing loss that was causing his inattention and lack of concentration? Was exhaustion causing the bullheadedness, impatience, and sour disposition? Was it having so much on his mind that was causing him to throw up his hands in frustration at all the paperwork and reports?

Of course, in retrospect, I know it was confusion. Irritation at the confusion. Embarrassment. And fear. When you know you aren't remembering things that should be automatic, things you've been doing excellently for years, it's frightening.

I can hear you saying, "Okay, we get all that. But what were some of the warning signs?"

When he started needing assistance completing spreadsheets, asking me for help with the same things over and over ("How do you freeze the rows at the top again?"), was that a warning sign, or was it just easier to ask me than to look it up? When he didn't have time to complete his reports, so I pitched in to help him catch up, was that a warning sign? When he worked longer and longer hours without being able to complete his tasks, was that a warning sign? Should I have known at that point, or would a person blame overwork?

When I helped him organize his office and there were a half-dozen copies of everything in piles on his desk and in desk drawers and in filing cabinets, yet he was making another copy, should I have realized he didn't remember having a bunch of them already? Because I thought he was just in a hurry to meet a deadline and didn't want to waste time searching the stacks.

When he refused my offer to consolidate the paperwork for him, was it because he thought I wouldn't realize I was throwing away something important, or was it because every piece of paper had become important to him, and hoarding behaviors had begun? And what is the difference between a hoarding behavior and, say, a prized collection?

When he angrily thought someone must have taken something he couldn't find, rather than simply assuming (like most people would) that the item had been misplaced, is that when I should have known?

And so, you see, the "first warning signs" are things you only notice in retrospect. They are different from the later warning signs...the repeating of a story right after telling it, the forgetting whether or not you've eaten a meal, the wondering where your kids live and how many grandchildren you have. I should have know, but I didn't. And, probably, neither will you.

But if things are happening that have you wondering, please get your loved one checked out. There's no cure yet, but there are medications that can slow the progress of the disease. And hang on to your hope.