Snapshots of Dementia: Memory Matters

Posted by Marti on May 6, 2022 in Dementia | 4 comments

Although the frontal-lobe aspect of Tom’s dementia means we noticed devastating behavioral changes, his memory loss has also been a consistent sign and symptom. 

Throughout our journey, I’ve heard comments such as, “Oh, I forget things all the time!” or “I do that too—maybe he’s not as bad as you think!” While yes, we all forget things, there is a definite difference between forgetfulness associated with normal aging and forgetfulness associated with dementia. I won’t go into those details here, but you’ll find a good explanation at this link.  

In short, experts often use the term “memory loss that disrupts daily life” to distinguish it from more normal, age-related memory loss. I’ll give you a few examples from various points in Tom’s journey that I hope will illustrate why memory matters and how debilitating it can be.  

Work: While Tom was still employed as a minister of music, he had increasing trouble keeping track of the details needed to serve a midsize congregation (around 500 in attendance total at three different services). The last year or two, when he led choir rehearsal, he invariably left one or two songs out of the audio file he had prepared in advance. After he lost his job and I spoke with our former senior pastor (who had retired the year before), I learned that often, he and Tom would have a discussion that Tom didn’t recall even a few days later. During this time, he also struggled to use his in-ear headphones and fumbled with his mic nearly every week; he also forgot preplanned details of the services. 

Home: Long before diagnosis, we had to install special hinges on our front door to close it after Tom left it wide open more than once when he left for work. Nowadays, his memory has declined enough that he leaves other doors open on a regular basis: cabinets, dishwasher, refrigerator, freezer—I often think about how short his memory must be if he can’t remember to close a door he has opened only seconds before. 

As you can imagine, he loses and has lost various items for years—I’ve sometimes wished I could have all the time back that I’ve spent hunting for them! We do use a Tile tracker and connected app on the most essential items, but it’s amazing how quickly he can lose the remote, his phone, his reading glasses, his coffee mug, or whatever object was last in his hand.  

Outings: Memory loss makes it increasingly difficult for Tom to navigate places he doesn’t know well. When we go to a store and he needs to use the restroom, I stand near the door, or he won’t find his way back to me. He hasn’t driven for nearly three years now, but when he—who, unlike me, had always excelled at directions—couldn’t find even familiar places, I knew something was wrong. For right now, we still sing in our church choir, but he invariably gets confused about how to get from the choir room to the platform, and I try to make sure one of the other men helps him navigate. 

Relationships: Memory loss affects his relationships as well, and this goes beyond the normal not remembering someone’s name that we all experience at times. He does remember some people, but because he forgets others, he tends to “latch on” to certain ones and talk to them, sometimes excluding those he doesn’t remember. Recently, he came to me quite upset because he had received an email about a high school friend who has cancer. Tonight, I shared with him an updated prayer request for this man, and he told me had never known anyone with that name. 

Conversations: Tom has been a storyteller for years, and if you know him, you’ve probably heard some of his stories more than once. Now, he has a shorter set of stories, and he repeats the same ones—sometimes to the same people. He tells our family these tales as if we’d never heard them before—and we try to listen as if we haven’t. A day will come when he has no more stories, even no more words, and I want him to delight in telling stories as long as he has the ability.  

Despite the heartbreaking nature of these changes, we see a bright side to them as well (more on that next time), and even a funny side. I learned early on not to say, “Don’t you remember?” although I still slip at times. The truth is that he doesn’t remember, and any explanation of why I think he should doesn’t help. First of all, his memory is no longer “joggable.” Second, his cognition has declined enough that he tunes out my explanation. The mental picture God gave me is that of the “wah-wah-wah” adult speech in the Peanuts animated cartoons. My goal: Don’t be the “wah-wah-wah.”  

How has memory loss affected you or someone you know who is living with dementia? What concerns has this aspect of dementia brought you or your loved one? Feel free to share on social media or in the comments below. Memory matters, and so does our story—and yours.