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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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Snapshots of Dementia: Third Time’s the Charm

Snapshots of Dementia: Third Time’s the Charm

Photo by Steve Johnson on Unsplash Before I started these “Snapshots of Dementia” blog posts, I asked my Facebook friends about the idea. The volume and intensity of responses amazed me. I remember thinking at the time, OK, people, I hope all of you who said yes will read it. And you have. I’ve had more interest in these dementia posts than anything else I’ve written here (I posted regularly for a few years before Tom’s health began to go downhill and I took a full-time job.) So as a preface to today’s post: THANK YOU! I am grateful my words make a difference. I believe our story matters, or I wouldn’t share it. Ultimately, I pray it makes enough of a difference that others won’t have to wait so long for diagnosis or disability or even just plain old understanding (reference: man in the red truck). But in the meantime, I am living this journey as well as writing it. And this week, that’s been a challenge. For now, let’s just say the government and the medical profession are working hard to make sure I have more to write about. At the point where I last shared about our progress, we had finally visited Neurologist No. 2, with fairly unsatisfactory results. I was on my way to making an appointment with Neurologist No. 3: In the meantime, to review the medical part of our journey so far: 1. Neurologist No. 1 (two visits, a year-plus apart): “He’s fine, just short-term memory problems, no worse than my 80-year-old Alzheimer’s patients.” 2. Neuropsychologist (one visit for testing, one for feedback): “He’s fine, just ADHD and shame from poor behavioral choices. He can do better.” 3. Neurologist No. 2 (two visits a few weeks apart): “He’s sort of fine. He has depression. I need to watch him closely.” (No, thank you). You may recall I had already enlisted the help of a prayer team. One of those prayer partners, a dear and longtime friend, is also a registered nurse whose husband has Parkinson’s Disease. As she and I talked, I expressed my concern that Tom might have Dementia With Lewy Bodies (DLB), a Parkinson’s related disease (it has gained recent notoriety because comedian Robin Williams apparently had this diagnosis). He had several Parkinson’s-type symptoms (I’ve written about the tremors, and he also drags his feet when he walks and sometimes stumbles.) From what I had read about DLB, I knew it might be a match. My wonderful friend urged me to seek (and even helped me seek) the care of a neurologist who was also a movement specialist. I called and explained our situation and secured an appointment. They needed Tom’s...

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Snapshots of Dementia: To the Man in the Red Pickup

Snapshots of Dementia: To the Man in the Red Pickup

Dear Man in the Red Pickup, Photo by Neonbrand on Unsplash I know you were angry yesterday morning as you hurried to work. Maybe you were late, and the older couple walking along your route didn’t help. I too have experienced frustration when a biker or pedestrian slowed my progress. It’s no fun, especially when you need to reach your destination on time. And of course, it didn’t help that this road had no sidewalks. What was this couple doing out there anyway? Because I work in a world of words, I often see information as the answer to everything. Still, I realize you may not be interested in information. But since I remained silent while you screamed and swore at my husband, I thought I’d offer more of the story—albeit a little late. You see, there’s at least one thing you couldn’t have known about him: He has an early-onset dementia called FTD (frontotemporal degeneration) that prevents him from making wise, quick decisions. So when you tried to teach him a lesson by staying firmly in your lane yesterday, and he didn’t move, he wasn’t being stubborn—at least, not in the way you or I might be. He simply isn’t able to process a concept such as “A truck is coming. It may not stop or move over. I should get out of the way” fast enough to do what you expected. I realize you saw his behavior as arrogant and rude. But this is far from the truth. Until about two years ago, he was a pastor who loved (and still loves) God and people. Even at his best, he would have thought you should respect him as a pedestrian, but I doubt he would have challenged you by remaining in your lane. Now, he just can’t think fast enough to move over, even when I tell him to (which I did as you approached us). So even though you told him, “Next time, I won’t stop,” I’m not sure he has the mental ability to change his behavior. My husband’s dementia also causes obsessions. One of his current ones is walking, and so the two of us walk at least 3.5 miles every morning and nearly that far every evening when he’s not too tired (his dementia also causes exhaustion). Several months ago, our family made the decision not to let him walk alone anymore. Although he knows about the COVID-19 pandemic and social distancing, he can’t follow the steps needed to carry out those restrictions on his own. His lack of logic also means that more than once, I’ve had to pull him back from crossing a street as a car headed right toward him....

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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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