Opinion | Dementia and Alzheimer’s are about way more than memory

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This month there is an anniversary to be marked with sadness. Three years ago, my 89-year-old husband left our home north of Stillwater to have lunch with a friend in Edina. It was a once-a-month occasion for lifelong friends. He drove away with happy anticipation and enough lead time for an on-time arrival. I left home shortly thereafter to golf with friends. After 18 holes and a bit of 19th hole cheer, I returned to find a frantic dog and no sign of my guy.

Luckily, when I called his cellphone, he answered.

“Where are you?” I asked, trying to manage the tone of my voice against the frantic voice in my head. “I think I’m near Sioux City, Minnesota.” A quick scroll to maps on my phone turned up no such Minnesota location. I would later learn that after mistakenly heading north on Hwy. 169, he turned around drove southwest across Minnesota, ending up in Sioux City, Iowa. Three hundred miles and nine hours later.

Within 24 hours he would be home, the car keys would be hidden and the leap to memory care would be underway.

By this point, we had already been through a difficult few years with his declining cognitive capacity and a host of manifestations that cannot neatly be summed up as memory issues. More about that later. While I was surreptitiously vetting care facilities and taking the necessary steps to qualify him — a definitive diagnosis, medical exams, COVID tests and insurance questions — he was writing lists of our assets to be divided when he chose to divorce me if I wouldn’t let him drive. It was time.

So, here’s the beef: Dementia and Alzheimer’s are about way more than memory. And friends, I think the American way of giving “memory” prime billing as we talk about cognitive decline is a serious and painful failure to acknowledge the myriad other symptoms and behavioral indicators dementia and Alzheimer’s throw at us.

Let me start with decline in judgment and reasoning. Like when someone calls and tells you you’ve won the Publishers’ Clearinghouse sweepstakes and you believe him. And you give him a $200 gift card to secure your winnings. Or when he calls the next day and says it’s the Readers Digest Sweepstakes. And you still believe him.

Or when your normally meticulous desk is littered with junk mail because you’ve decided it’s the right thing to do to answer every appeal that comes your way.

Or when you have written so many checks that you’re recording them in the wrong checkbook and often sending the same charity more than one check a week.

Or when you tell your wife she’s forbidden to talk to your children about these things.

When the emotional management goes, apparently there’s some brain bypass that kicks in and says, “I deserve more.” Shopping maybe. Sex. Obsessing about things and people and places. So, I would put excesses or obsessions on the list of things way more critical than memory!

Before we talk about memory — because it is, after all, important — let me mention planning, process and decisionmaking. I tell friends that if they want to gauge the decline of a friend or loved one, put a big menu in front of them and see if they can decide what to have for lunch. Or try and play a board game with them. The functions I’m talking about are task-oriented manifestations of decline in judgment and reasoning, but they play out on a small scale in the day to day. These are clues we may want to paper over. We ignore them at our peril.

After having experienced all the above with my husband, I complained to a friend that I regret not having had much affirmation from friends for what I was seeing. He was showing up for lunch at the wrong time or on the wrong day. They could see his ability to express himself was in decline. Were they seeing these things as memory problem only? Is that why they didn’t tell me?

Memory matters. But it is only a piece of the picture. I fear we have tried too hard as a society to sanitize cognitive decline. We are masking the difficult realities to the extent that people like me are alone, angry and feeling guilty when their loved one begins the descent into dementia and/or Alzheimer’s. And sending them off to “Happy Acres” or “Golden Hour” home is a marketing maneuver that leaves everyone underprepared for the next phases of cognitive decline — however they may play out.

As my guy approaches three years in dementia care, I tell friends the back end of the illness is much easier to cope with than the front end. He’s virtually helpless, mostly content and still capable of smiling. Way easier to love, too.