James Wheeler/Unsplash “What I would really like—is to have my Facebook back.”   It took Tom a much longer time to get those words out than it used to. But when he said it a few months ago, my answer didn’t change. I’ve heard this request a few times since, at the request of our marriage counselors, he closed his Facebook account in 2018. I am far from a control freak. And the reason I will never say yes to this request is not so much because I’m worried about what he might post—if he could—but because that’s how the scammers initially found him.   Like many of us, Tom loved connecting with friends on Facebook. And eventually, scammers loved connecting with him too. I’m not sure how they initially found him, and doubt I want to know. But I do know that those villains I’ve learned are called “catfishers” got him, and through Facebook and email, they hooked him.   All through one summer and part of the fall, he was giving away money in the ways I mentioned in my last post. When I opened separate bank accounts, I wasn’t trying to keep him from our money but to protect it. Raising five children on a pastor’s salary plus my varying freelance income, we’d never had a lot extra. I had intended to use my now-regular income as savings for retirement. Instead, I had to pay off his huge credit card bills—and pay back our children’s college trust.   That fall, our marriage counselors asked Tom for an accounting of how much he had given away. I’m not sure he remembered it all. But with what he could account for, the total came to nearly $30,000. Had I not found that final uncashed check, it would have been at least $10,000 more.   Because the doctors still kept telling us he was fine, neither our counselors nor I associated his behavior with dementia. Serious problems, yes. Dementia—no one else seemed to think so, so why should I?  At least four times, Tom fell for scams as believable as the emails we’ve all gotten from the wealthy prince in Nigeria. Despite his interest in other women, his primary motivation was helping others. Even when, through counseling, I gained the strength to insist he stop contacting the catfishers or move out, he at first insisted he needed to keep his one remaining contact. After all, she was stuck in another country with no way to get home, and “she promised to pay me back.”   The few times I’ve shared even part of this story, people ask if we ever recouped our money. Not. A. Penny. Tom went to the police early on to complain about being blackmailed, and whatever they...

(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...

(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...

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...

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...