Snapshots of Dementia: Sudden Impact

Posted by Marti on December 16, 2022 in Dementia | 7 comments

For much of this year, we’ve rocked along in our dementia journey without major obstacles or downturns. In fact, I realized the other day that Tom hasn’t had a major fall for a number of months. I don’t know if we can attribute that to an improvement in his balance, to his now-regular use of a walker, or to something else, but I’m grateful. 

However, I do recognize that his general direction is not up or even forward but steadily downward. At times, the force of what’s happening slams me right in the face—or, more accurately, in the heart—with what I can only describe as sudden impact. 

This happened just two weeks ago when we were rehearsing our Christmas presentation. During our rehearsals, my mind kept returning to only a few years ago. Every December, Tom would throw all of his musical, physical, and spiritual energy into directing a full-blown Christmas production. Yes, I was proud of and grateful that this year, he sang a solo. But when I allowed myself to compare that to everything he used to do, the tears threatened to overflow.  

As we presented the Christmas music for the audience, I asked God to help me concentrate on the music, the message, the moment—so I could rejoice rather than weep. And thankfully, Tom never knew anything otherwise. 

Another sudden-impact moment happened just last week when a research coordinator from Emory’s Neurology Department met with him via Zoom to conduct some cognitive testing. In the past, doctors used these tests to help determine their diagnosis (or, for years, their lack of one). Now, the tests help assess how his dementia is progressing. Some relate to memory, and others, to overall cognition.  

When we were desperately seeking diagnosis, I wanted the testing to reveal deficits. Back then, his scores were high, remaining in the normal range even when his behavior showed obvious problems. But during last week’s testing, I realized that I wanted him to remember more or perform better than he could.

The sudden impact came when I realized he couldn’t follow the simple instructions for some of the tests. Of course, I had to connect my laptop to the internet and set up the Zoom call; that would have been far more than he could do. 

In the past, Tom refused cognitive testing once or twice because he had taken these tests so often. Now, he simply accepts it as something he’s supposed to do—one more event that came with a sudden impact.   

We don’t have the full report yet, but the preliminary notes said the testing showed deficits in multiple areas. This shouldn’t have been news, but I still felt its sudden impact. 

This week, I experienced yet one more sudden-impact moment. For the past few years, Tom has enjoyed watching The Voice. The combination of musical talent and silliness fits his interests and attention span well. This season’s finale took place Monday and Tuesday, but we only watched part of Monday night’s show and none of Tuesday’s.

Tom still likes to control the remote (raise your hand if this surprises you), although he needs more and more help to use it appropriately. We waited until tonight to watch Tuesday’s final episode, but he clicked on Monday’s night’s show. 

I knew we’d missed the first part of that session, so I just let it go. But when we reached the section we’d seen before, which was the bulk of the show, I reminded him that we’d already watched it. 

At least, I thought I was reminding him. Instead, I was giving him new information. He moved the recording forward just a bit, then continued watching. Before long, his comments made me realize: He didn’t remember anything we’d seen only a few nights before. Not the words, not the music, not the singers—nothing. Every bit was new. 

I might already know who won this season’s contest, but I’m not sure when I’ll get to see the show. We may move on to the next episode the next time we watch, or we may watch it again. Either way, I don’t think Tom will remember.

I don’t mind the Groundhog-Day like quality of our viewing nearly as much as the sudden impact of realizing just how much this disease has stolen from my husband. Yes, he realizes he forgets. But I’m thankful that, most of the time, he doesn’t face the sudden impact of realizing just how much. 

If you or someone you love is living with dementia, how have moments of sudden impact affected you? What areas have brought you up short or slammed into you as you realize the severity of the disease? Feel free to share your thoughts in the comments below or on social media. Our story matters—and so does yours.