Living with Alzheimer’s

Montrose Daily Press [May 22, 2015] Kathryn R. Burke

The brain scan last week told the story. Two years ago, my husband’s brain looked almost normal—a few blank spots here and there, but on the whole, very few ‘holes’. Last week, it looked like he had a head full of Swiss cheese—typical for someone who has Alzheimer’s Disease.

When he has memory gaps resulting in confusion as to time and place, I explain it to him this way: a normal brain is like a block of cheddar—pretty solid; an Alzheimer’s brain is like Swiss cheese—lots of holes. That pesky memory mouse pops up in one hole, then hides in another for a while. We never know when (or where) he will pop back up again.

“What day is it?” “What time is it?” These are pretty common short-term memory gaps, easily resolved with calendar and clock. Thinking he’s in another place and time, that’s a little harder to fathom. So, we get out the maps, peruse our memory book, go back in time for as long as the time takes until he comes back around to the here and now. Confusing, yes, but much easier to go along for the ride, because there is no reasoning with someone who has Alzheimer’s. To try is to frustrate you both. Might as well go with the flow and slip into their world for a while, because they can’t travel in yours.

Where he goes, and when, is interesting. What verbal triggers, visual cues, sent him back there? What did I do or say that might have caused it? Can I undo it or maybe even direct the destination with specific actions or words? When my husband has it somewhat together, we examine where he went in his mind, try to figure it out.

Eventually came a (dreaded, but not unexpected) moment when my husband didn’t recognize me. Right in the middle of supper, in the middle of a sentence, like somebody flipped a switch, he was no longer at our dining room table, but somewhere in Kansas, waiting to catch a flight to Wichita. “Really good food,” he said. “I like this restaurant.” The first time he did that, I thought he was kidding.

Nope. Next night he was in Toledo. After supper, he asked for a cab to the airport. I got it then, so I said it was too late to get a flight. “Is there is a motel nearby?” he asked. “I need a place to sleep.” “You are welcome to stay here,” I offered. He gratefully accepted, thanking me for my hospitality. When I led him into the bedroom, he noted, “This is a nice room, I think I’ve stayed here before.”

All this could be pretty scary—and it was. It might have sent me calling 911 for help—but I didn’t. What was happening was already in my ‘Get Prepared’ notebook I’d been working on for a few years.

After my husband’s initial dementia diagnosis, I began journaling his decline while learning all that I could about the disease and how to manage it as his Caregiver. I attended Alzheimer’s Organization classes at Mesa, signed up for Region 10’s REACH program, met with counselors, therapists, doctors, and nurses, and engaged a home care service. I read everything I could about AD and joined online forums, including, alzheimersreadingroom, Alzheimer’s Foundation (, and more. I asked for help from my support group. Members are like family and are dealing with a range of disabilities and problems. They understand and their suggestions are invaluable.

You can’t fix AD. There is no cure. Yet. And, it’s terminal. What you can do is prepare yourself to be ready when that memory mouse pops up less and less and the Swiss cheese holes become so big there is no place left for it to hide.

Kathryn R. Burke is a spousal caregiver and the author of The Caregiver’s Journey, Navigating the Path, available at

Update: He died two years after this article was published.It turns out that the final diagnosis was Lewy Body Disease, the second most common cause of dementia and almost always mis-diagnosed.  In it’s later stages, LBD and AD often co-occur.  Learn more here about LBD and diagnosis confusion.