(Andres Urena on Unsplash) Tom hobbled into the kitchen the other day, a man on a mission.  “What’s wrong, baby?”  “My Fitbit is broken,” came his gloomy response.  “What seems to be the problem?”  “It won’t show me the time anymore. It’s broken.”  Tom can’t walk for exercise anymore, but he retains his obsession with his Fitbit. He can’t charge it on his own anymore either, but he wants to make sure it’s always ready for use. And when he accidentally switched it over to timer rather than clock mode, he felt sure it was broken.  You and I wouldn’t come to that conclusion. But you and I, for the most part, are not people living with dementia.   “Here, let me see it,” I said, reaching for the device.  Of course, it only took a few taps and swipes for me to return it to clock mode.  “Here you go! I got it working again,” I said as I gave it back. It makes more sense to go with his reality than try to explain the details.  He took the Fitbit, turned, and walked back to his recliner, his dismay forgotten.   Given Tom’s obsession, you’d think he would have been happy and grateful. But although he still expresses happiness and gratitude at times, he does not typically connect those to events such as this one. And in the short time before I returned the device to him, he may have forgotten about his “it’s broken” conclusion.  In the days when I didn’t realize Tom was LWD, happenings and conversations like this confused and upset me. Why was he acting this way?  The “personality changes” mentioned in lists of dementia signs and symptoms often look different with different people. I’ve heard and read many stories from others whose loved ones are LWD. Since I didn’t realize that some types of dementia initially (and most types eventually) have a behavioral connection, I thought some of Tom’s odd behaviors were just that—odd behaviors, mistakes, or misunderstandings.   Looking back (yes, we know what they say about hindsight) I realize that some or all were symptoms of the evil lurking inside his brain. Here are a few more of the changes he exhibited some time before he had a dementia diagnosis:  — PESSIMISM: Always an upbeat person, he became a negative one. In the same way the Fitbit was “broken,” the banking website was “messed up,” and his discipline of our “terrible” dog became unduly harsh. For someone whose world is becoming more and more challenging, it’s easy, even natural, to be negative.  — APATHY: Tom had less and less interest in family birthdays, anniversaries, even special events such as a couple’s baby shower for our...

(Unsplash) She nailed it.   My friend, whom I can always count on to call ’em as she sees ’em, read between the lines when I wrote about my foolish assumption that I wouldn’t need an alarm on my freezer. In case you missed that post, I learned the hard way that an alarm is an excellent idea when your loved one is living with dementia.   What my friend noticed, in her usual insightful way, was not so much the cost of the food we lost—although that was significant. Instead, she pointed out the time I lost:  — Time spent checking all the food (some of which remained frozen, much of which did not).  — Time spent throwing out the spoiled items.  — Time spent mopping the floor.  — Time spent scraping, wiping, and otherwise cleaning up the freezer.  — Time spent shopping to replace the spoiled food.  — Time spent working late to make up for the time I spent doing those all those other things.   Dementia has many hidden costs—$321 billion a year in the U.S. per a 2022 analysis. But without a doubt, one of the greatest is time—for the family or whomever is caring for the person LWD. As the disease progresses, the time spent on the person LWD only grows.  I feel blessed to have a profession in which I can, for the most part, set my own hours. When I first began working from home, one of my jobs required a regular schedule with half-hour or every-hour deadlines. I had to start by 8:30 a.m. at the latest and often worked straight through for many hours with only the smallest of breaks to check on Tom.  Over the past year and a half, God has allowed me to make some major adaptations in that schedule, and although at times I need to write or edit a piece within a few hours, I generally have a much larger window of time. That’s huge because although Tom can still do some things for himself, my time-costs have risen in the following areas:   LEAVING THE HOUSE: This aspect of our LWD life reminds me of when our kids were small and I had to allow extra time because invariably, a last-minute emergency would delay us. Our LWD last-minute emergencies include bathroom visits, retrieving forgotten items, closing doors left open, him refusing to leave until he finishes a game on his iPad, and more.  INTERRUPTIONS: This time-cost has increased significantly in the last six months. I have rarely asked Tom not to interrupt me while I work (and if I did, he wouldn’t remember). So when he misplaces his reading glasses, his Chapstick, his remote control,...

(Facebook/Horton Hears a Who) You remember the Dr. Seuss story. Horton the Elephant becomes the champion of Whoville, going to extreme lengths to save its citizens from threatened destruction by his jungle pals. The theme that resonates throughout arrives in Horton’s oft-repeated line, “A person’s a person, no matter how small.”   We’d all agree.   Or would we?  I used to complain—or at least wonder—about people who seemed unaware of those around them: How can they not pay attention to anyone except themselves?  You’ve seen people like this. It’s the woman so focused on the groceries she needs that she doesn’t realize her cart is blocking the aisle.   It’s the man who talks loudly on his cell phone, oblivious to the fact that he’s disturbing everyone around him in the otherwise-quiet waiting room.   It’s the woman next to you at the beauty salon who launches into a long story as if you were her best friend, eager to hear all the not-so-interesting details.   It’s someone living with dementia. Or at the very least, it could be.   Tom, my person LWD, has trouble focusing on more than one thing at a time. He doesn’t push a grocery cart for me anymore, but when he did, he would often cut across someone’s path without realizing they were there. I intercepted several angry looks and gestures while he remained oblivious.  He rarely uses his cell phone now, but when he did, he tended to speak loudly, and his conversations were often circular in nature. Since he couldn’t follow directions well, whatever was explained to him had to be repeated more than once, often without good resolution.  And his stories? Most people who have even a passing acquaintance with him has heard at least one of his stories—often multiple times.  Today, we visited a medical specialist’s office. It was our second visit, and although the doctor was treating Tom for a medical problem, he of course knew he is LWD. At first, the doctor spoke kindly to him. He even repeated himself without flinching when Tom asked about the same thing he had explained less than two minutes earlier.  But the more time they spent together, the less patience this doctor seemed to have. By the end of the appointment, as Tom tried to finish a (surprisingly brief) story, he interrupted him, gave me some final instructions, and walked out of the room as if Tom weren’t even present.  I know doctors are busy, and I know this one had other patients waiting. And Tom? He didn’t seem to notice anything had changed. He blinked, turned his attention to me, and promptly forgot what had happened.   But I knew. And...

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...

(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...