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Snapshots of Dementia: Scam Alert, Part 1

Snapshots of Dementia: Scam Alert, Part 1

(Unsplash) “Turn it off,” I said, my voice shaking. “I just can’t watch that.”  The YouTube video that caused me to speak to my daughter in such a direct way had a topic too familiar to all of us: dementia. As I recall, it involved two men who exposed scams, this one targeting senior adults who were living with dementia. The investigators were doing a great job of ferreting out those responsible and (I presume) helping bring them to justice.  That wasn’t the problem, of course. The problem, for me, was the deliberate way they pointed their attacks toward someone LWD, easily confusing and misleading them.   And the real problem—the reason I couldn’t watch anymore—was that this happened to our family too.   More than two years before Tom’s official diagnosis with dementia, while the neurologist was still telling me he was fine, we experienced one of the worst seasons of our lives. We were already going through marriage counseling after he confessed some very inappropriate activity (not a physical affair). What should have been one of our happiest times, with one of our daughters getting married that summer, quickly become just the opposite.  Tom was barely doing the required homework for our marriage counseling. In fact, he often seemed disinterested when we met (via Zoom, although the pandemic was a few years away) with our counselors from Pure Desire Ministries.   The loneliness I often experience now while married to someone LWD is nowhere near as great as what I felt then. I cried nearly every day, sometimes sobbing for much of my forty-minute drive to and from work. Why did my husband no longer seem to care about our marriage?   Over that summer and fall, at the same time as we were going through counseling, complete with accountability partners to whom Tom reported every week, he was giving away our money, several thousand dollars at a time. The first time, while out of town, he had money wired from our bank to share with a scammer. Later, he used credit to buy gift cards, also shared with a scammer.  And here’s one of the worst parts: because he was the primary money manager, I had no idea any of this was happening.   I had noticed his increasing struggles, and (at my insistence) Tom had a neurological workup including an MRI, but I wasn’t yet in relentless pursuit of a diagnosis. In fact, it took almost a year after that for me to connect the problems in his behavior and in our marriage to his dementia.   Like many people, I thought of dementia as primarily a memory issue. Tom had some memory problems, but he also had many other behavioral...

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Snapshots of Dementia: My Favorite Things

Snapshots of Dementia: My Favorite Things

(Screengrab, “My Favorite Things,” YouTube/Fox Family Entertainment) When Julie Andrews sang it, it sounded like so much fun: “I simply remember my favorite things/ And then I don’t feel/ So bad.”  When you are living with dementia, can’t think much beyond the moment, and have a memory that grows shorter by the day, you remember your favorite things—and stick with them. In Tom’s case, as in the case of many people living with dementia, the familiar and favorite have become the essential. For him, “favorite things” include:  Music: Since Tom was a professional musician and worship pastor, music comes first. Although he doesn’t listen to music as often as before he was LWD, he still loves it. He owns about 30 Christmas CDs, but this year, he played only two—multiple times. If you get him talking about jazz, he’ll want to share YouTube clips of favorite bands, although he’ll need help to find them. His smaller memory has compressed his list of favorites, but he still knows what he likes.  Radio: Tom has a regular weekday and weekend morning regimen of radio programs. We’ve lived in South Carolina for more than three years, but he still insists on streaming the same Orlando NPR station he enjoyed on his morning drive to work. On Saturdays, after he’s finished with the NPR lineup, he listens to children’s programs on a California station—the same one we listened to every Saturday when we lived in Oceanside many years ago.  Television: His television tastes vary a bit more than his radio ones, but not much. For a while, he would watch repeated clips of The Carol Burnett Show and a few other childhood favorites. For the past couple of years, he’s only watched a few new programs. We’re now on the fourth round of one of his favorite shows, Blue Bloods. He enjoys the repeated episodes as if watching them for the first time—because with such a short memory, he is.   Books: With my help, Tom still checks out books from the library, reading mostly digital books on his iPad. As with television, he understands largely in the moment and can’t often explain or describe the content. Except for his morning Bible reading, he doesn’t read every day, and he reads and rereads only a few favorite authors and books. Electronic Games: Before his diagnosis, I despaired of the time he spent playing what seemed like mindless games on his laptop. Now, he plays games on his iPad, mostly a golf game he’s enjoyed for years (although he now plays at a much lower level) and a series of word games (with frequent help from me). These all cause a certain level of frustration, but he returns to...

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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: Not My Problem?

Snapshots of Dementia: Not My Problem?

Photograph © Dennis Minty, 2022. When my mom and I took our recent cruise, I left my caregiving responsibilities behind—but as I wrote last week, they didn’t leave me.  And guess what? Dementia didn’t leave me either—even when it wasn’t my problem.  On our first expedition day when we left the ship to visit Sable Island, Mom decided to stay behind. We left the ship according to color groups, so when the leaders called ours, I headed to the mud room—where we prepared to disembark—without her.   As I pulled on my waterproof pants, rubber boots, and other equipment, I noticed a woman I’d seen when Mom and I were having our boots sized. We’d introduced ourselves, and I remembered her name.   Today, she was visibly upset. “I don’t have a backpack,” she said. “My shoes will get all wet.” On the trip necessities list was a backpack (and dry bag to hold it) to carry hiking shoes, phones, and anything else we needed for off-ship excursions.   I’d already planned to carry Mom’s equipment in my bag. “I can take your shoes,” I told the woman. “I have extra room.”  She seemed overjoyed. “Oh, thank you! Thank you so much!” she told me as I stuffed her shoes into my pack. She disappeared after that, but I knew I’d find her on the island. I didn’t think she’d attempt a hike in her rubber boots.  For the next few minutes, I finished preparing, then followed the procedure we’d learned for safely seating ourselves on the zodiac. Despite some fog, we had a fairly smooth ride and landed on the island with the help of our “spinners,” who turned the zodiac and pulled it onto the beach.  Next, I headed for the area where we could change into our hiking boots. I didn’t have a hard time finding my new friend—not because she was looking for me, but because she was looking for her shoes.  “I can’t find my hiking shoes,” I heard her tell someone else. “I don’t know what happened to them!”  “I have your shoes!” I said, pulling them out of my pack.   Once again, she was overjoyed—momentarily. She didn’t say, “Oh, that’s right!” or “Of course!” She just accepted the shoes and moved on.   And I wondered.   From then on, I kept noticing this woman (I’ll call her L). Although L had an extensive vocabulary and could carry on an interesting conversation, every time I encountered her, she seemed a step behind. Once, she showed up with our color group on a tour segment—but she belonged in another. I saw others shaking their heads at her evident confusion.  And I wondered.   Another day, I was...

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Snapshots of Dementia: Inside Edition

Snapshots of Dementia: Inside Edition

A recent photo of Tom in his recliner, one of his birthday gifts this year. Although I shared a guest post last week, most of the snapshots of dementia so far come from me. Today, I wanted you to hear from someone else—someone who’s been present throughout our dementia journey. That person is my husband of almost 39 years, who has been living with dementia for at least the past five years and probably much longer.   As Tom’s symptoms progress, he has increasing trouble focusing on more than the simplest information. Always a creative who loved to share ideas and information, he used to say he didn’t think outside the box—he couldn’t even find it. Today, his cognitive box is small—and it shrinks a little more every day.  I conducted the following “inside edition” interview one evening this week—not the best time for him because of the sundowning I mention in this post. Despite my editorial distaste for ellipses, I’ve used them here to indicate pauses—sometimes long ones. I consider this a true snapshot of dementia: Tom’s perspective in his own words, even when his answer doesn’t match my question.  MP: So if you were going to tell someone what it’s like to have a young-onset dementia like this, what would you say?   TP: It is just deceptive. One point, you can be clear-headed. . . and putting footstep after footstep, and then other times, you. . . it’s. . . You know that I. . . I try to. . . try to keep a good. . . attitude and. . . it’s frustrating to me that like, when I have sundowner’s, because it just. . . it’s just like Let’s Make a Deal. You open it and suddenly you’re just there. You can’t change your emotions. . . Your continued encouragement and taking care of me and setting up stuff for me. . . it’s so encouraging. Sometimes you have pulled me off the cliff … and I feel encouraged and loved and cared for. . . . I never in any of my dreams ever thought that this is where I would be now (tears).      MP: What do you think is the hardest thing for you about having this disease?  TP: One thing would be. . . there are times when I can walk, and. . . I try. . . I try to keep reading because I don’t want to be locked in on word games and my golf game [both games he plays on his iPad]. . . . There’s not very many times that it happens, but sometimes you are wanting to do something or wanting to go someplace. . . and I’m trying...

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