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Snapshots of Dementia: Sudden Impact

Snapshots of Dementia: Sudden Impact

(Paul Barlow, Pixabay) 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...

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Snapshots of Dementia: Learning the Hard Way

Snapshots of Dementia: Learning the Hard Way

(Pixabay) As the mom of five children, I’ve said more than once over the years that one or more of them “had to learn things the hard way.” Sometimes I chose not to tell them what I thought was a useful, even essential piece of information because I realized they wouldn’t receive it. At that point in their lives, I knew they had to learn things the hard way. And—like many of us before them—they did just that.  After all this time, I’ve discovered, much to my chagrin, that I’m also someone who has to learn things the hard way. We have an upright freezer in our garage. A few months ago, Tom forgot to close the freezer door, and we lost several cartons of ice cream before I discovered it.   “Mom, you can get an alarm for the freezer,” my son told me. “It would let you know whenever the door was standing open.”  “Oh, I don’t think we need that,” I said. Especially because of Tom’s memory loss, I have often appreciated the alarm on our refrigerator door, but a garage alarm seemed like overkill. I could always check on the door after Tom used the freezer. And he didn’t go out there too often anyway. Why spend the money on an alarm?  You guessed it. He left the door open again a few months later. This time, I caught it fairly soon and closed it before any food was damaged.  And it happened again—because a box fell over and held the door open after I used the freezer. This time, I had to wash and replace everything on the door and a few things inside the freezer too.   But I still didn’t buy an alarm. It was my mistake, I reasoned. I’ll just make sure no boxes get in the way. I carefully cleaned and rearranged the entire freezer before filling it up again. I found myself checking and rechecking the door whenever one of us used the freezer to make sure we had no further problems. After all, I didn’t want to go through the mess or expense again.  Ice cream remains one of Tom’s favorites, and as with most of his comfort foods, he feels much more secure if we have plenty on hand. This means we keep six or eight cartons of ice cream in that outside freezer (he doesn’t think they stay cold enough in the freezer at the bottom of our refrigerator). Years ago, I got into the habit of buying meats and other items ahead of time, and I also freeze soups, homemade pizza crusts, and other meals or ingredients so I don’t have to cook every night. In other words, we make...

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Snapshots of Dementia: That Time We Were Glad He Forgets

Snapshots of Dementia: That Time We Were Glad He Forgets

Photo by Valeriia Bugaiova on Unsplash Throughout our dementia journey, good times and challenging times have intertwined. God’s sovereign hand means even the darkest of circumstances can dawn bright enough to be a blessing. We also know that even the happy times carry a profound element of grief.  This past winter, an unusual chain of events transpired that reminded me that even those times of forgetfulness and confusion play a part in the way God “causes all things to work together for good to those who love him and are called according to his purpose” (Rom. 8:28, NASB). We experienced this in the fall of last year, and it began with a physical fall—one that only happened because of Tom’s dementia.  He and I had done some Saturday shopping at a local grocery store. I’d had reverse shoulder replacement surgery only weeks before and still had one arm in a sling. With my one good arm, I was loading the groceries into the back of our car, Tom by my side.   As we finished, our grocery cart rolled down the store’s sloped parking lot, and a woman driving toward us honked her horn. I turned around, but it was already too late. Tom was running to retrieve the cart, both hands in the air, swinging his body from side to side.  Despite his panic, there was no emergency; the cart wasn’t rolling fast, and we could have retrieved it. The car, a large SUV, wouldn’t be damaged by its impact.   But a real emergency loomed. In my head, Tom had already fallen and I was calling 911.   And then it happened. He fell flat-out, right in front of the oncoming car (mercifully stopped at this point). Within seconds, I was by his side.  “Baby! Are you OK?” I said as he lay there, stunned.  “I think I am,” he said as I helped him up. I told the driver that he was fine, and she drove on around us, no doubt wondering why he had run as he did to retrieve the cart.  I didn’t wonder. I already knew that dementia had stolen Tom’s “safety” mode. When his fight-or-flight response kicks in, it’s strong and immediate.   But I also knew he might not be fine. But since he hadn’t lost consciousness and had no obvious injuries, I took him home.  By Monday, I called our primary care physician because his pain had increased, and I feared he had broken a rib. It was now Thanksgiving week, and she had no appointments, so her office sent us to an Urgent Care.  An x-ray showed two broken ribs—and a large mass in his left lung with extending fingers to the lymph nodes.  Once CT...

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Snapshots of Dementia: Memory Matters

Snapshots of Dementia: Memory Matters

Photo by RoonzNL on Pixabay 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...

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Snapshots of Dementia: It’s the Little Things

Snapshots of Dementia: It’s the Little Things

Photo by Danielle Rice on Unsplash Over the past several months of my somewhat irregular “snapshots of dementia” posts, I’ve written about lots of big things. Our painful journey toward diagnosis. Job losses. Wounds to our marriage and our family. Asking Tom to stop driving. And more. But I’ve also noticed that with dementia as with many areas of life, the little things often have just as much impact as the large ones. Consider the following as not a list of my favorite things but rather of the little things that touch my heart as I watch his early-onset dementia, frontotemporal degeneration, steal so much from my husband. — Open Doors: Tom’s short-term memory has become so short that he rarely remembers to close doors or drawers. You may recall that much earlier, we had to put special hinges on our front door to close it automatically because more than once, he left it standing open when he left for work. Now I can trace his path through our home by the doors and drawers he leaves open. Praise God for a refrigerator with an alarm! — Press Pause: Sometimes I find Tom standing in our hallway, a blank look on his face. Although it passes quickly, I know this means he’s started to go somewhere or do something and forgotten what he started out to do. I can hear some of you saying, “But I do that all the time.” Yes, but probably not fifteen or more times a day—and within only a few seconds of starting the activity. — Delayed Departure: My experience as the mother of five has prepared me well for my current stage of life. As a mom, I had to plan to leave 10 or 15 minutes earlier than the actual departure time because someone wouldn’t have their shoes on or another would need to make a bathroom stop. Even if I tell Tom, “We have to leave in a few minutes,” his broken brain can’t translate that to the steps he must take to be ready to go. In fact, if I give him only two things to do, he will usually forget one of them. These days, we exit more slowly and often have to make a trip or two back inside before our true departure. — “You’re So Smart”: Tom often makes this comment multiple times a day. “You’re so smart” because I could log onto the library website. “You’re so smart” because I knew how to install an app on my phone. “You’re so smart” because I remembered what I had planned for the weekend. What touches my heart here? He never used to say, “You’re so smart” because...

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