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Snapshots of Dementia: Whole Lotta Shakin’ Going On

Snapshots of Dementia: Whole Lotta Shakin’ Going On

“Whatever you do, if they take you out to lunch, don’t hold your drink like that.” Photo by Nira Giri on Unsplash Two close friends gave Tom this advice as they sat at one of our favorite Charleston restaurants (we lived on one of Charleston’s barrier islands before we moved to Florida). The year was 2007, and these two prominent businessmen were giving him tips as he prepared to interview for a ministry job in the Orlando area. But what difference would the way he held his drink make? When he told me about their comment, I knew exactly what they meant. Tom has what doctors call an “essential tremor” in his right hand. I don’t remember that he had it when we first met more than 40 years ago, but I do know he’s had it for a long time. This genetic condition causes involuntary shaking and can occur almost anywhere in the body, but most often in the hands, especially when performing activities such as tying shoes or drinking from a glass. The Mayo Clinic says it “is usually not a dangerous condition, but it typically worsens over time and can be severe in some people.” Tom’s sweet tea, in the grand old Southern tradition, came in a heavy glass. His friends noticed his hand shaking and didn’t want it to signal any sort of problem. I’m not sure if he remembered not to hold a glass during the interview process, but he did get the job, and our family moved to Florida that July. I bring up the tremor because it was yet another symptom I questioned when I became concerned about other issues and began our quest for a diagnosis. Tom’s first neurologist was the one who told me it was called an essential tremor, and that it was “nothing to be concerned about; lots of people have them.” At his casual words, I heaved an inner sigh. I had plenty of other thins to be concerned about. But of course back then, I didn’t realize how many. Only a few months after that visit, as I sat in church with Tom one summer Sunday, he put his arm around me, and I noticed it was shaking violently. His tremor, I thought. It seems so much worse. But then I realized something that concerned me even more: It was the wrong arm. I didn’t realize it then, but Tom was experiencing great stress. Our pastor told me during my lifechanging pre-Christmas visit that no matter what they discussed before the service or how similar the order of worship was each week, one of the many things Tom couldn’t seem to remember was when he should...

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Snapshots of Dementia: Tom and the Terrible, Horrible, No-Good, Very Bad Idea

Snapshots of Dementia: Tom and the Terrible, Horrible, No-Good, Very Bad Idea

Photo by William Hook on Unsplash Sometimes, dementia has a humorous side. Tom and I have a running joke about his “good ideas.” Part of him realizes he doesn’t always make the right choices, but not enough to keep him from making the next wrong choice. One dementia spouse described it this way: “The part of him that says, ‘That’s not a good idea’? That’s gone. If you’ve been following these posts, you may have noticed a few of these “good ideas,” some much more serious than others. Here are a few more: —One day, I came home to a horrible smell. He couldn’t tell me what had happened, but I quickly figured out that Tom had poured nearly a quart of gasoline down our kitchen sink. Our son had drained the gas from a scooter he was repairing, and Tom decided we needed to get rid of it. (Besides the judgment problem, this incident helped me realize he had lost his sense of smell, also courtesy of his disease.) —Another day, I came home to find scraps of one of my thin acrylic cutting boards in the trash. When he couldn’t find the pan he wanted, Tom had used the board as a baking pan for a can of cinnamon rolls. He knew something was wrong, but when I asked him about it, he couldn’t even name the “pan” he had used. (He also said the rolls tasted fine!) Just as with the gasoline, God’s grace prevented a fire. —One memorable evening found me typing away in my upstairs office when I heard a sound no one wants to hear: a scream, then a crash. I must have skipped several stairs in my hurry to reach a moaning Tom, now lying on the floor of our two-story great room. Determined to put up a new television antenna he’d received for Christmas, he had climbed to the top of our 12-foot ladder and stood on top. When he still couldn’t reach the window ledge where he hoped to place the antenna, he began to make his way back down and, as he said, “only” fell from the eight-foot level. The emergency room doctor was amazed that he ended up with no broken bones or other serious injuries. I was too. —Last August, while we were staying with our friends awaiting the sale of our home, Tom locked himself out of his cell phone, something that has happened multiple times before and since. Convinced it was broken, he wanted to visit the cell phone store. The problem? I was at work, and the friends we were staying with couldn’t take him to the store till later that afternoon. An adult...

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Snapshots of Dementia: A Step in the Wrong Direction

Snapshots of Dementia: A Step in the Wrong Direction

Photo by Ahmed Zayan on Unsplash Where could he be? Traffic was extra heavy the night of our Sunday school Christmas party in 2016, and although I left work as soon as I could, I still arrived at the home of our pastor and his wife about 15 minutes late. But where was Tom? He had volunteered to bring one of our more senior class members with him, so he would have left from the church and picked her up on his way. Neither of us liked to be late, so since I couldn’t control what time I finished work, I figured he would arrive first. Not prone to worry, I busied myself helping set up the huge array of food for our potluck meal (remember those?). Still, I kept my phone handy. We waited, and waited, and after some other late arrivals, we finally started the meal without our two stragglers. I didn’t want to bug Tom if he were stuck in traffic. So I kept looking at my phone, holding off on my own meal until he arrived. Surely he’ll show up in just a few more minutes. More than an hour after the party began, I got my phone call. As I anticipated, Tom sounded upset. “I don’t even know what’s going on,” he told me. “It’s like I can’t get there from here. We’re coming, though.” “How long do you think you’ll be?” “I have no idea.” And just like that, he ended the call. In another 20 minutes, I had another call, this time more frantic. “Tell me the address,” he said. The address? Why does he need the address? Wouldn’t he have already entered it in his phone? And besides, he’s been here multiple times. What on earth is going on? Finally, nearly two hours after the party started, Tom pulled up with our friend after what should have been at most, even in holiday traffic, a 30- or 45- minute drive. Always gracious, she joined the happy group, chattering away about the traffic and ever-present construction. But Tom remained silent. Angry? Embarrassed? I couldn’t tell. All I knew was that no, he didn’t want to eat. No, he didn’t want to play games. And yes, he was extremely upset. For a few minutes, I thought we might need to make a quick exit. I had rarely seen him in such a state. He sat across from me at the table. But once he realized the party was well underway and no one seemed to pay much attention to his tardiness, he relaxed. We finished the evening well and enjoyed the fellowship with dear friends. Still, I was thankful when another man volunteered...

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